What Time I am Afraid Trusting God When Life Scares You
In the spring of 2002, at the age of 5, Autumn had her first sign of problems. She had pain and diarrhea for a week. We took her to her pediatrician, who said she probably had a virus and an irritated colon. She was fine after one week.
In July, Autumn had another episode of pain, bleeding and diarrhea. This time they did a stool culture - results were negative. She grew better on her own.
Again in September of 2002, she had the same symptoms, but this time she did not get any better. Our pediatrician sent us to Children's Hospital in Columbus where we met out gastrointestinal Doctor. The Lord directed us to Dr. Crandall. He was very informative and seemed to really listen and care! By the way, he had six children under 9 at the time, so we were not alone.:)
Autumn had already lost quite a few pounds. He immediately scheduled a colonoscopy. The colonoscopy showed her entire large intestine ulcerated! Because she was already bleeding from her disease and she had had a colonoscopy, the staff could not get her bleeding under control. Autumn was admitted to Children's for her first round of IV steroids. After many large boluses of steroids and a week in the hospital, we finally went home. That was our first experience with this disease of Ulcerative colitis and definitely not the last! Autumn continued to struggle it seemed every six months. We started out with colozal and prednisone. After she was weaned from the pred. she became ill again. This time in 2003 Dr. Crandall put her on 6mp. Again, we agonized with the Lord on whether to even do this med. because of all the side effects. In November in 2004, Autumn again made a slow decent in her sickness. She was having 20-25 bloody stools a day and 5-6 at night. She had lost a good 10 lb. She looked very very ill!!
Again, she was admitted to Children's and again she was given dose after dose of IVsteroids. The first 3 days it was not working, we were very close to giving her a blood transfusion. The Lord intervened and the steroids finally started working. We stayed in the hospital for about a week and a half. We came home just in time for Christmas. Autumn was put on colozal, steroids, and 6mp.
For six months, she felt pretty good, but again she became ill. After much prayer, we added to her list of meds. Remicade which is an infusion drug that was given every 8 wks. This seemed to work.
Then the Remicade quit working...we upped her dose of prednisone to 60 mg.
In August of 2005, after much prayer and counsel we radically changed our diet and the steroid was lowered from 30 to 5mg.
By November it looked as if she was really doing well. Under the Doctors advice, we dropped her steroid in half and then took her completing off.
Within one week she again was in pain and bleeding. She lost 3 lbs in one week. Autumn was again admitted in Dec of 2005. She was given high steroids. We came home Christmas Eve.
Then we had to make a decision for our precious child that no parent ever wants to do. On March 10th, 2006 she had her large intestine removed and a j pouch created. This was a 7 hour surgery. We were in and out of the hospital for over 6 months. Her second surgery was June 8, 2006. Four days later on June, 12, 2006, she had a third surgery (emergency) for a complete bowel obstruction.
Through out the summer of 2006 we were in and out of the hospital with bowel obstructions. That year of 2006-2007 a strange fever climbing to 104 would plague her. Finally came the diagnosis - pouchitis - an inflammation of the pouch that was created to replace her colon. After a year on an antibiotic, Cipro, her fevers subsided.
Today she still has her struggles: her ups and her downs. The Lord is Good. This is a fact, a part of His character. The Lord has been so good to our family. We know He was with us in that very hard time and He is still with us today!
The following verses have been and still are such an encouragement to me:
Psalms 131: Lord my heart is not haughty, not mine eyes lofty; neither do I exercise myself in great matters, or in things to high for me. Surely I have behaved and quieted myself, as a child that is weaned of his mother; my soul is even as a weaned child, let Israel hope in the Lord from henceforth and for ever.
The following is the start of a book I have been writing based on the blog entries when Autumn had to have surgery for her diseased colon. Although it is not finished, may it still be a blessing to those who choose to read it!
Preface &Dedication In our relatively short time here on earth, we have come to accept the fact that life can be scary—and sometimes downright frightening. People all over the world regularly experience trials and difficulties and like it or not, you don’t need a major trial to come into your life to frighten you—the everyday stuff of life can be scary enough.
Our family is probably not much different than yours. There really is nothing special about us and we certainly do not consider ourselves great teachers on surviving the trials of life. But we firmly believe our experiences have been used by God to stretch us and grow us and, most importantly, keep us dependent upon our Saviour, Jesus Christ.
So this is really a story or testimony about the Lord and His greatness. It is a story that another family going through the same trial might be able to understand.
Most of the blog entries on the following pages were written by Cassandra as the events were unfolding. Other than minor editing, we have left these posts unchanged from how they originally appeared on walkingworthy.org.
Count Down to Surgery
Blog Entry - February, 2006It has been a difficult road knowing exactly what the Lord wants us to do regarding Autumn. Recently, many loving people have suggested other alternative medicine routes--many of which look hopeful. But we looked into some of these avenues last year and now it seems best to follow the path the Lord has brought us to. Its difficult--Autumn's our little girl, 10 years young--but Cassandra and I are resting in our Saviour.
Please pray for Autumn. Pray that the surgery goes well and that God directs the doctor's hands. Pray also that she would have no infections following surgery. Finally, thank you all for your prayers. We know so many of you dear brothers and sisters in Christ have been praying for Autumn all these years. Thank you so much. God bless!
Michael & Cassandra
Blog Entry - February 2006 This evening we will be traveling up to Children's Hospital in Columbus (1 1/2 hours away) for what they call a tour of the surgery room. They do this to let the children see and feel before hand to alleviate any unknown fears. They also serve cookies and punch which is a BIG plus for all my children. :) Autumn is pretty excited about getting to see "behind the scenes"; of a real surgery room. She wants to bring her American Girl doll so they can fit it for a colostomy bag as well. Children are funny.
They deal with pain and trauma so much different than we adults. I was talking with her last evening. Her comment was something like,
"If you believe this (the surgery) will make me feel better then it's okay."
That's a lot of responsibility on our shoulders and a lot of trust on her part. Here is a living example of coming to Christ as a little child--such innocent and simple trust. I don't think she really knows how much pain and change of life this will be. She either only sees the positive outcome or is only verbalizing it.
It's hard to tell with Autumn. Psalm 131 states:
“I am not excising myself in things that are to high for me.”
This is a true trusting. We truly at this point are trusting. We can not exercise ourselves in this thing that is too high for us to understand. She is and always has been the Lords!
Blog Entry – February, 2006In the spring of 2002, at the age of 5, Autumn had her first sign of problems. She had pain and diarrhea for a week. We took her to her pediatrician, who said she probably had a virus and an irritated colon. She was fine after one week.
In July, Autumn had another episode of pain, bleeding and diarrhea. This time they did a stool culture - results were negative. She grew better on her own.
Again in September of 2002, she had the same symptoms, but this time she did not get any better. Our pediatrician sent us to Children's Hospital in Columbus where we met out gastrointestinal Doctor. The Lord directed us to Dr. Crandall. He was very informative and seemed to really listen and care! By the way, he had six children under 9 at the time, so we were not alone.:)
Autumn had already lost quite a few pounds. He immediately scheduled a colonoscopy. The colonoscopy showed her entire large intestine ulcerated! Because she was already bleeding from her disease and she had had a colonoscopy the staff could not get her bleeding under control. Autumn was admitted to Children's for her first round of iv steroids. After many large boluses of steroids and a week in the hospital, we finally went home. That was our first experience with this disease of Ulcerative colitis and definitely not the last!
Autumn continued to struggle it seemed every six months. We started out with colozal and prednisone. After she was weaned from the pred. she became ill again. This time in 2003 Dr. Crandall put her on 6mp. Again, we agonised with the Lord on whether to even do this med. because of all the side effects. In November in 2004, Autumn again made a slow decent in her sickness. She was having 20-25 bloody stools a day and 5-6 at night. She had lost a good 10 lb. She looked very very ill!!
Again, she was admitted to Children's and again she was given dose after dose of iv steroids. The first 3 days it was not working, we were very close to giving her a blood transfusion. The Lord intervened and the steroids finally started working. We stayed in the hospital for about a week and a half. We came home just in time for Christmas. Autumn was put on colozal, steroids, and 6mp.
For six months, she felt pretty good, but again she became ill. After much prayer, we added to her list of meds. Remicade which is an infusion drug that was given every 8 weeks. This seemed to work.
In August of 2005, after much prayer and counsel we radically changed our diet to try and meet Autumn's needs. She seemed to be getting better. She was taken off the Remicade and the steroid was lowered from 30 to 5mg.
By November it looked as if she was really doing well. Under the Doctors advice, we dropped her steroid in half and then took her completing off.
Within one week she again was in pain and bleeding. She lost 3 lbs in one week. Autumn was again admitted in Dec of 2005. She was given high steroids etc. We came home Christmas Eve.
Now, we have had to make a decision for our precious child that no parent ever wants to do. On March 10th she will be having her large intestine removed and a j pouch created. This is a 5-7 hour surgery. We will be 2 weeks in the hospital and a 6-8 week recovery. Her second surgery will follow 6-8 weeks after the first.
The Lord is Good. This is a fact, a part of His character. The Lord has been so good to our family. We know He is with us in this very hard decision. Ps 131 has been such an encouragement to me:
Lord my heart is not haughty, not mine eyes lofty; neither do I exercise myself in great matters, or in things to high for me. Surely I have behaved and quieted myself, as a child that is weaned of his mother; my soul is even as a weaned child, let Israel hope in the Lord from henceforth and for ever.
We covet your prayers as we anticipate surgery soon.
Blog Entry: February, 2006 (Michael)We talked a little about the surgery today on the way to school. Autumn made it clear that there were only 12 days to go. I feel she has accepted all of this and is mostly trusting her mother and I to do the right thing. At times, it seems Autumn's anticipation more resembles ones eagerness for vacation or spring break. As any child would, she seems to enjoy some of the attention. But knowing Autumn as I do, she knows what's ahead--as much as anyone heading to surgery can. She's spent enough time in the hospital to know that it isn't the kind of place you like to stay for long.
One of the other children mentioned something about the colostomy bag Autumn will have to wear for a couple of months. I felt it important to correct them; this wasn't going to be a fun experience. Autumn, in the way she normally handles things, said,
and proceeded to tell us her plans to make things more bearable.
For me, it's important to remember that God has a level of maturity that he desires to bring all of us to in this. Trusting Him has to be more than agreeing with the nod of the head; it has to be lived out in our daily lives--in his experience—and Christ must be glorified in it all. Sounds easy right now, but in another 12 days, I know it will be much harder.
Blog Entry – February, 2006Thank you for all the encouraging notes, letters and email. What a blessing to know people all over the country are praying for our little Autumn. She would not consider herself little, but she will always be our little girl. As the surgery date gets closer, we continue to lean on our Saviour. As a mother, my heart struggles with allowing anything painful to happen to her, yet my soul is at peace knowing we are traveling on a path our Lord has set for us. Each time we had to try some other medication (because the one she was on was not working) we desperately sought the Lord for His wisdom. The side effects of the medicines used to treat her colitis are so damaging. The one good thing about this surgery is she will be off all the medications. To her, that is a BIG plus.
The Prednisone she is on now has totally changed her look. She has the Prednisone cheeks and the weight gain that goes with it (about 15 lbs). On the lighter side, we went to the surgical center for a tour on Tuesday evening. When I called to set up the appointment, the lady on the phone asked how many were coming. I said, “Nine.” After a moment of silence she said, “Are you bringing a party?” I replied, “That’s our family!” We always get the stares. It’s a lot of fun. :)
Psalm 16:11 Thou wilt show me the path life: in thy presence is fulness of joy; at thy right hand there are pleasures forevermore.
Isaiah 41:13 For I the Lord thy God will hold thy right hand, saying unto thee, fear not; I will help thee.
We just returned from a much needed trip to my parent's home, Dennis and Kay Ice. When life seems to spin out of control the first place to turn to is at the feet of the Jesus, to His throne of grace. The very next place is ones' parent's home! :)
We left right after school on Thursday and returned late Friday. The best medicine for a weary soul is Christ, Mom and Dad, and rest. Thank the Lord for Godly parents who love and pray for their children.
As we were traveling home in "The Ark", (for those of you who do not know, this is our 15-passenger van the Ledgerwood family gave to us. Michael dubbed it “the ark”; and the name has stuck) my husband and I were discussing Autumn's upcoming surgery. This decision has been so hard! Many people whom we love and respect have given us such wonderful advice. Books to read, people to call, doctors to talk to are just a few of the many excellent helps people have recommended to us.
But when do we know 100% that we are definitely doing the right thing? Can we know? Are we doing the wrong thing?
These are just some of the questions I posed to my dear husband. He replied with one question:
"What does God our Lord and Saviour who loves us personally want us to do?"
We have prayed for wisdom. James tells us:
If any man lack wisdom let him ask of God who giveth to all men liberally (James 1:5).
We have certainly asked. The more we talked the more we knew what our answer was. Will I be sad? Will I cry? Yes, but the difference is our God is good, loving and kind. His grace is sufficient and underneath are His everlasting arms gently holding us up.
Please pray for protection from sickness. There is so much of it going around. So far Autumn has not had any of the viruses that many people around here have had. This is truly a miracle since she is on so many immuo-suppressants.
Serenity, our baby, came down with a fever this evening. We are hoping and praying that she is the only one who comes down with whatever this is. The last thing I need or want is sick children. We thank God for you all!
The Lord is so good to our family.
Autumn will be admitted to Columbus Children's Hospital on Thursday the 9th. She will be having a bowel prep to prepare for surgery on Friday the 10th. Those of you who have had any kind of bowel prep know how nasty the drink that they give you is.
Autumn has had to drink it twice before, so she knows first hand how “gross”—as she calls it—it is.
With that little Autumn grin she said, You think they have invented the IV version yet?"
I told her I wish that they had!
My mother and dad are coming to sit with us during the surgery, which will be such a blessing since my husband is my pastor. :) Many of you have asked who will be helping us with the children. A very sweet young lady will stay with our children on Thursday and Friday (there is no school on these days because of the Ohio Christian school academic competition, so she has them all day). My parents will watch them on Saturday and Sunday. Then my mother and father, bless their souls, will take Serenity (1), Stephen (2), and Timothy (4), to their home for two weeks while Autumn is still in the hospital. My husband will be mom and dad to Joshua, Melody Joy, and Carissa for the duration of the hospital stay. Maybe he will need more prayers than I do! :) We are trusting that God will be glorified through this trial and that many seeds will be planted to show His grace and mercy.
Thou wilt keep him in perfect peace whose mind is stayed on thee: because he trusteth in thee (Isaiah 26:3).
Surgery DayBlog Entry – March 9, 2006 (Michael)Today, Autumn was admitted into Children's Hospital. She had a very difficult day. Most of the day was fine until the afternoon when she was having the hardest time.
In tears she told Cassandra, “I didn't know it was going to be like this. I want to go home!”
Blog Entry – March 10, 2006 Wednesday: Long and Late.Let me back up to Wednesday. We had several errands that had to get done before we went to the hospital so the entire family was up early getting ready. We also had two other children with us that my wife is temporarily baby sitting for. We loaded everyone in the our 15-passenger van and took the four oldest to school. They would be getting out early at 11:30 p.m.
The Day of Surgery.Autumn is in surgery as I am typing. I will back up to get you to this point. Yesterday was very hard. She had the GI tube down her nose into her stomach so that the Go-Litey could enter without her tasting it. Up until 2:30 she really was a real trooper - No tears, no complaining. But at 2:30 p.m. we were alone in the room. I sat on the bed with her and held her in my arms. Great big silent sobs racked her body. Those of you who know Autumn, know she does not show emotion much.
As she sobbed in my arms, she said, "Mom I want to go home now!" (At that point I was ready to go as well!)
I held her and together we quoted our verse she had chosen for the hospital, "What time I am afraid, I will trust in thee."
My heart as any mother is so sad that my little girl is struggling so much. She needs to learn now to lean on our Saviour, the One who really cares. This morning went very well, she felt good, she had no medicine, and nobody bothered her. We had our devotions together before any one came to the room. I read out loud the story of the healing of Jarius' daughter and the healing of the women with the issue of blood. When I finished I asked her what she was thinking.
She said, "If Jesus was walking in this hospital, we could ask Him to heal me."
I asked her why she thought Jesus had not healed her. She wasn't sure. We then read II Corinthians chapter 1. I asked her again.
She said, "So I can help and and comfort someone else." God can use even this!
Pastor Bob Shaw, Pastor Steven Shaw, Dr. Ice (my dad), and my husband all prayed over her before we went down for surgery. The nurses laughed and said that with that many pastors praying over her she is sure to recover quickly! Any mother knows the heart wrenching feeling that goes through you when your child is in pain or anticipating it. I held her until the last second. A part of my heart was torn as I said my goodbyes. What a precious thing to know that Autumn is in the hands of the Great Physician. Surgery will be for about 5 hours. Thank you for your continued prayers. The cards and gifts were overwhelming!! We love you all so much!!
Later in the Evening. It is now 6:00pm and Autumn is still in surgery. The nurses just updated us on her condition. So far, all is going well. "No news is good news" as they say. Bob and Karen Shaw stayed with us for a couple of hours. What a comfort and a blessing to have such sweet encouragement from these dear folks. My parents have been with us the entire evening. The surgeon said it would be a couple more hours. Thanks for your prayers.
Still Later. 7:30 p.m. and she is still in surgery. They have a couple more hours to go. Please keep praying for grace. It is going to be a late night. Love to all.
Surgery is Over! Autumn came out of surgery at 8:30pm. It ended up to be a 7 hour time period. Dr. King (her surgeon), told us it was very tedious because her colon was very "sick". The colon was very fragile because of all the bleeding and mucus that goes along with her disease. That caused him to have a harder time connecting her small intestines to the J-pouch they created.
Later on, we found out her colon had 5 places of displasia (precancerous cells).
It just confirmed for us that we had done the right thing. Her bowel could have perforated at any time because of how far the disease had gone. Which means we would have had to do this in an emergency setting instead of a controlled environment like we have now. She has a tube down her nose because her bowels are still sleeping, a catheter for urine, an epidural for pain, a colostomy bag just below her belly button on her right side, and a monitor for vital signs. Her incision goes from the bottom of her chest cavity to the top of her pubic area. She is doing well and not doing well. Her surgery went well, but of course she is a child and is in pain. As a mother I can not do much for her but pray and hold her hand. That is gut wrenching.
Late at night. It is 11:15 p.m. and she is resting. Please pray that her intestines wake up soon so she can get the GI tube out of her nose. I praise the Lord for His sustaining grace. I am so TIRED, and we have only begun. God Bless all who have prayed. Please continue.
Blog Entry – March 11, 2006 I do not have to much time, because I need to get back to Autumn. She spiked a fever last evening of 102.5. The nurses gave her Tylenol. She can not have anything by mouth because of the GI drainage tube in her nose (all the secretions from the surgery are draining out of that tube.) So they gave her a suppository. This, of course, caused a lot of pain because they had to move her. For some reason, the epidural was not keeping the pain level down. The Doctor came in and gave her a bolus of the epidural and benadryl to help her sleep. The fever is most likely coming from her lungs not expanding well enough. She needs to breathe deeply to prevent pneumonia. She is on bed rest today and nothing by mouth so her lips are bleeding and cracking. She has had nothing to eat since noon on Wednesday. Please continue to pray for no infection. Love to all.
Later in the Day.Autumn is feeling so much better. I believe it is a direct answer to so many prayers. Her fever is down to 100. This is common for post surgery. Her pain is under control, (at this point) there is no known infection, and her deep breathing has helped open up her lungs to prevent any further problems. This morning all she would do is stare at us with those big, brown puppy dog eyes. She would not talk or even smile at me. (believe me, I tried everything!) :) BUT.... this afternoon she had her first visitors after surgery. The Severson family came by to see and talk to her. By the time they left, many small smiles were seen on her face. What a blessing. Many times this morning I felt I was speaking to a wall with eyes and ears because there was no response. She is still on bed rest and nothing by mouth. Continue to pray for her not to have any infections and for her small intestines and stomach to wake up soon.
"Come unto me all ye that labor and are heavy laden and I will give you rest."
Blog Entry – March 11, 2006 Well, I was encouraged, but now she has a high fever again. It could be the fact that she still has the anesthesia in her lungs. If she does not cough this out, it could result in pneumonia. The nurse had to roll her on her side to give her the Tylenol as a suppository. I have never heard Autumn scream before. I can not describe how that makes a parent feel. It is such a helpless feeling. She cried and sobbed. We had a very hard time settling her down. Now she is very afraid to breathe and cough. She needs to or she will be here a long time. She now just looks and stares. She won't talk; just looks at me with those big eyes. Please pray for strength for her daddy and I. And, of course, Autumn our little trooper.
Later. Autumn's fever is down to 100 again. The Tylenol seemed to help. The anesthesiologist came and gave her a bolus of the epidural to help her pain level. Now she is feeling better and talking a little. She also is deep breathing again. They seem to be having a hard time regulating her pain level. If we could get her pain level lower I think things might be a little better. It is hard to tell with children. Is it fear; or is it a lot of pain? My emotions are really having a hard time. :) Lack of sleep is probably the reason. Thanks for praying. His grace is sufficient.
Blog Entry – March 11, 2006 (MichaelThe extra medication boost they gave Autumn has really worked. After taking a good nap, Autumn has been quite cheery for most of the evening. Cassandra was thinking of maybe staying at the Ronald Mc Donald House tonight--she is so tired from not really sleeping last night--so she went over about 6:30 p.m. to register her name in. While she was gone, Autumn asked me to help her play with the Lite-Brite she received as a gift. I stood awkwardly over the bed holding it up as she meticulously put in each tiny piece.
"Are you tired standing there?"; she asked me. "No"; I replied, "anything for you Peanut."
Peanut has been her nickname since she was born. She was born 3 weeks early, weighing under 6 lbs when we brought her home. She's much bigger now but will always be my Peanut. I read her a book and by that time Cassandra had returned. With teary eyes Cassandra told me she couldn't do it; she just couldn&'n't stay away from Autumn, even one night (I had hoped she could get at least one good nights rest; she is so tired!)
The new shift nurse just checked everything and Autumn is doing very well. When asked about her pain, she said zero! And then she surprised us. She asked if Cassandra and I could help her sit up a little. We let her take our hands so she could pull up only as far as she wanted to. There was a little pain but it was bearable! I quickly used the fan we had brought along to cool her back off--it made her feel much better. I can't tell you how much it means to all of us that so many of you are praying for our daughter. The Lord our God has asked us to pray and so many of you are and have been. Praise the Lord for He is good and righteous and holy and merciful and just!!! He hears us when we pray according to His will. What a great God! Pray not only for Autumn&'s health and recovery, but pray that the Lord is glorified in all of this--His glory is the most important thing.
Blog Entry – March 12, 2006 (Autumn)I am walking. I am in the playroom. I have a tube in my nose and three Ivs. Thank you for praying for me. I miss you. bye, Autumn. My pain is 1.
Right now we took our second walk to the playroom. Autumn is sitting at a small table making a craft to hang on her IV pole. Her pain level is so low because the pain team upped the epidural. Because of this, she had no problem walking. You could call it a slow shuffle. :) Plus, she is talking more to both of us!! YA! that means she is feeling better. The GI tube was pulled out an hour ago. Dr. King said there is no more drainage coming out of it. She is still not allowed any thing by mouth. He wants to see if she can go without the tube without vomiting. Tomorrow she might be able to have some ice chip and see how that is tolerated. I feel better because she is in good spirits. I got a couple hours of sleep last evening.
The Lord is good isn't He? He only gives us what we can handle and no more. His grace is sufficient and He is seen when we are so weak. I know this is a verse somewhere. I just am not quoting it very well; my Bible is in the room. :) As a mother, I see glimpses of what the Lord means by the verse that says our soul is quieted as a weaned child is with its mother. Love to all.
Many of you saw Autumn's picture in the playroom. They have a computer here that has a camera attached to it. This computer is also how I have been able to update so easily. Well, she made it to the playroom, sat in the chair and made a craft to hang on her IV, but could not get out of her seat to get back to her room. She was a little worn out. :) Michael and I got a wheelchair, lifted her into it, and wheeled her back to her room. She was ready for the bed. She is not used to the colostomy bag hanging on her leg. The weight of it seems to bother her. This will be something for her to get used to.
It is 10:00am and we are in the playroom. it took us a good 15 min just to get her ready to walk and another 15 min to walk. But, we made it. Autumn had her first sip of water today. The plan is clear liquids if she can tolerate it. This is the first liquid since Wednesday evening. The epidural is still in. They do not want to take it out until she can tolerate liquids so she can start taking pain medicine by mouth.
On the home front, Mom and Dad have the other six. Believe it or not, Serenity threw up at 7:30 last evening and all night. Then Joshua and Stephen followed sometime in the middle of the night. Timothy and Melody are left and are saying they are NOT going to get sick! When I called Dad, he sounded very tired. Plans are changing on how to care for all these sick children. I mentioned going home to help, but Autumn started to cry. Of course, I would have left her with her daddy, but that just wouldn't do. :) She is my little girl who is very scared. Thanks for praying. God is still good.
Blog Entry – March 13, 2006 (Michael)A Turn for the Worse. It's 9:18 p.m. Monday night and I just now got to a computer to give an update. Autumn is not doing very well at all right now; we're asking everyone to please pray! This afternoon she began complaining about her back hurting where the epidural was. A nurse-practitioner came in and, although she could not see anything abnormal on her back, decided that it might be best to take the epidural out, which she did.
This, of course, would mean that Autumn needed to make the transition from epidural to regular medication for pain. Her abdomen would no longer be numb and she could expect some pain, even with the medication. They gave her something rather strong--oxicotin I think. The epidural would continue to last for a couple of hours after they removed it and by then this new medication should begin to take effect. But her back continued to be increasingly more painful. After I left to come home this afternoon, Cassandra related to me that they had given her morphine to help, but this seemed to have no effect. In fact, it took nearly 45 minutes just to get her to the bathroom here in the room--she was in that much pain! (Remember, since they took the epidural out, it was standard procedure to also remove the catheter). As we have mentioned before, Autumn has quite a high pain tolerance, but this is something altogether different. She has been moaning all evening. In tears she had to coax herself to take one step at a time to make it to the bathroom.
I spoke with Cassandra just about an hour ago and Autumn was resting--or at least trying to. She told me that the doctors had been in, even a neurologist—and no one really knows why she is in so much pain. Two options they gave were 1) a bruise under the skin that, for some reason, can't be seen or 2) some kind of fluid build up—there's a name for this that I can't remember—that would require immediate surgery.
#2 is the worse case scenario and Cassandra is having a difficult time with all of this.
I tried to reassure her that the Lord was still in charge; that He was not surprised by any of this. I reminded her about our devotions last night in Joshua 1 and told her to be of good courage. The only way they can determine if it is #2 is if they see problems in her movement, which they plan to check every hour tonight.
Later. My father-in-law just spoke to Cassandra and she said they were right now (about 9:15 p.m.) taking Autumn to x-ray. I think they are checking to see if she might have pneumonia and if that is the cause of such pain in her back. Please pray; this looks like it will be a long night. The Lord is still good!
Blog Entry – March 14, 2006 (Michael)Cassandra called me about 3 a.m. last night. Autumn was still in excruciating pain. I spoke to her on the phone and tried to comfort her as much as I could and prayed with her. Cassandra told me that the x-rays did not show pneumonia, but did reveal a lot of air or gas in her abdomen. There were no doctors last night to officially say this, so it is only a guess, but Cassandra wondered if Autumn's back pain might be that gas bubble causing the pain.
When she first came out of surgery, her right shoulder hurt and the doctor said it was a gas bubble; they have to pump in air to do the surgery and sometimes a bubble gets lodged in a shoulder and can cause pain but will eventually wear away. So Cassandra was thinking that maybe this was a similar situation. Autumn pretty much groaned and cried all night. Cassandra begged the nurses to up the medication, but they could not do so.
She also asked for an MRI but without a doctor around they couldn't do anything. Cassandra just called this morning (about 8 a.m.-Tuesday, March 14) and said that our surgeon had been in and is very concerned. This is not normal. Autumn should have some pain, but not this much. The fact that she was up and walking around and now can hardly move is definitely not right.
So they did up the morphine and our Doctor ordered a CT scan and an MRI scan.
1. Please pray they can find out what is causing so much pain and that the Lord will give them wisdom to do the right thing.
2. Please pray for Cassandra as well. She did not sleep last night and all of this is wearing on her.
At home last night, Melody Joy threw up and Timothy got sick on the way home with Papa and Grandma. They were the last two children who had not yet been sick. This, of course, means that I cannot go up to the hospital today since I need to care for Melody. Il'l be dropping the other two off at school today since they seem to be over their sickness; seems to last 24 hours and then be gone.
I feel bad that I cannot be there with Autumn or help Cassandra, but a woman from our church is over there this morning--praise the Lord! I'll do my best to keep everyone posted as Cassandra can't leave Autumn's side. Thank you all for praying.
Before I close, I believe the Lord would have me share something with you. Some of you reading these posts may be led to think that our faith is strong or that we are very religious; that it is our beliefs or faith that is helping us through this.
But this is not the case. Our source of comfort and strength is not "our faith" or "our religion", but Jesus Christ Himself. You see, we are not trusting in a "set of beliefs", but in a Divine Person, God's Son Jesus Christ. He IS God and Lord and Savior. But most importantly, He is OUR Savior and OUR Lord because we have a relationship with Him. This relationship with God is real and continues to be life-changing. Not everyone automatically has this relationship with Christ. In fact, people are born separated from God because of their sin. Cassandra and I are no different; we too are sinners. But there was a definite time in our lives when we--individually--turned from our sin and put our trust in Jesus Christ. No amount of doing good and choosing to "be religious" was going to take away our sin or make us righteous before God.
I put this site together so that we would have a convenient vehicle to deliver news and updates on Autumn so that God's people would pray for her. How I praise the Lord that so many of you are. But it is of eternal importance that everyone who visits this site seriously considers his or her relationship with God. Saying you are a Christian or simply going to a church does not erase ones guilty position before a holy God.
Later in the Evening. Autumn is doing much better but still has a long way to go. Basically, she is starting over. The transition from the epidural to the pain medication has not been smooth, but I believe they now have her pain to a manageable level.
Autumn can press a pump for more medication when she needs it and although this is regulated she has some control. Autumn went to the bathroom at 7:30 pm but could not go after that. She was up twice, trying for 20-30 minutes, but her body had undergone too much trauma with three straight catheters and all the morphine slowing things down, that she couldn't.
Eventually, they had to put a foley catheter in and leave it this time. This was hard and she cried. The MRI & CT scans, along with an upper GI, did not reveal any major problems. They still haven't located the cause of the back pain, but it is at least bearable now (morphine is probably helping too). The tests did show her stomach full of liquid and her intestines full of water and barium from the GI tests.
With the transition to morphine, Autumn's bowels have gone back to "sleep". Nothing has come out of the ostomy bag for 48 hours so her stomach is huge and she is very uncomfortable.
Here are several prayer requests:
1. Pray for progress breathing on the incentive breathometer. Sunday she was getting to 750, but now only 100. She needs to breath in on this deeply to help her lungs expand to prevent pneumonia.
2. Pray for strength and courage (because it really hurts) to walk more which will help her stomach "wake up". They walked a little this morning. Both she and Cassandra cried the entire way because of pain.
3. Pray for her bowels to move to ease the pain and discomfort.
She is back to nothing by mouth but is allowed to suck on a little ice. She has had no food for an entire week now and can have no water until her bowels begin to work again.
Autumn is trying really hard to get better and she is not whining at all. But everything is wearing on her. As I mentioned, her back pain is still there but is a lot better. Cassandra is very tired; she has gotten only 4 hours of sleep in the last 48 hours and with all the tests, she didn't eat anything all day yesterday until supper. God really used our friend Kristy and her daughter Maggie—family friends—to help Cassandra yesterday.
Since I couldn't be there with a sick child to care for, the Lord allowed everything to work just right for Kristy to spend the entire day with Cassandra and Autumn. She was there through all of the tests and after a nightmare of a night when Autumn suffered in pain. Isn't the Lord good to have worked all of this out like He did? Thankfully, Kristy is able to get there today. Cassandra is so grateful she has something to look forward to this afternoon and maybe can get some rest knowing Kristy is in the room watching on Autumn. Lord bless!
Blog Entry – March 15, 2006I apologize for not updating sooner. This is the first time I have been able to get out of the room and use the computer in the playroom.
Monday night was the worst night we have had so far. Autumn was in so much agony - back pain and stomach pain. I sat and held her hand all night long as she moaned in pain. The pain meds were just not cutting it; nothing could be done about it until morning (or so we were told). I cried, she cried, I prayed, she cried; she wanted to go home. I wish we could to. By morning, she was in so much pain she couldn't even move a centimeter from her bed. She had black circles under her eyes. I felt so alone, because humanly no one was with me.
I cried to the Lord for strength! God is so good. He answered my prayer way before I even asked. At seven, Tuesday morning, in walked some dear friends of ours, Kristy Holt and her daughter Maggie. The Doctor came in soon afterward. He took one look at Autumn and started giving orders. Things moved so fast from there.
We went to the MRI. Just to get Autumn from her bed to the MRI table is something I cannot even try to describe to you. She was in so much pain; it took four or five people to carefully lift her by the bed sheet to the table. She was so frightened by the machine! My heart hurt so much to see her moan and cry. They had to sedate her for the test, because she was so frightened and scared. Kristy stayed with me the entire time.
Next we moved on to the CAT scan. Again, just moving her was excruciating pain.
My poor baby kept saying over and over, "Please don't hurt me!! Please! Make them stop!"
What is a mother supposed to do? I cried out to my Savior in my heart for strength for myself and her.
Her bladder was so full, yet she was in so much pain, she could not go to the bathroom. They tried to put a Foley catheter in three times and it just would not go in because she was so frightened and there were so many people around her and her bladder was so full and her pain level was intense.
She had to get an upper GI by noon. It was now 11:55 a.m. They wheeled her to the test without being able to relieve her bladder. An NG tube was put down her nose for the barium swallow so the pictures of her stomach and small intestines would show up. She screamed and screamed from the ways they had to move her for the test. Maggie, who was sitting outside the room watching, said she was going go in there herself and make them stop!!
After the test, two residents tried to put a Foley in—they were men. Now she was crying from pain and two men were looking at her.
She kept repeating, "Don't let them see me! My back, my stomach, my bottom!"
Needless to say, we were exhausted when this was all finished. The pain team came in our room later and gave her a morphine pump.
Throughout this whole ordeal, I knew the Lord was with me. Sometimes I knew it by fact, but could not feel it. Verse after verse came to my mind. The Lord gave me His peace by this one verse, Be still and know that I am God. His presence is so real. My husband is updating the rest. Thanks to all for all the prayers.
Later. I just sneaked away for about 15 minuets. About 5:00 this evening we heard some bowel sounds for the first time. Nothing has passed through yet, but we are hoping very soon. Her little belly looks like she is pregnant. She is lethargic this evening and very dizzy. She is just lying in her bed staring, not talking. She has not pushed her pump much this last 2 hours. This is good for is means she is not in much pain right now. The dizziness is most likely do to not having anything by mouth since last Wednesday. She is only on IV fluids(Something ringers? I have been out of nursing for a long time). Please pray for everything to pass through soon. As soon as this happens she can have fluids by mouth, then food, then on to recovery as the Lord wills. Thank you for all of your prayers.
As I reflect on this past weeks events, I see so many blessings. There are so many hurting people in this hospital. The boy in ICU with a brain tumor, the children up on 5th floor who are so sick and the parents of the children who are on our floor - most without hope, lost and scared.
I have been afraid, I have been nervous, and I have cried, and worried; yet my ultimate hope is in the Lord Jesus Christ who saved me from eternal damnation and gave me a hope in heaven. All of this I have because I have turned away my sin repented of it and turned to Christ.
It is the comfort of the Holy Spirit that can give me peace. I have such a long way to go. May the Lord continue to make me more like Him. A verse given to me by a praying friend is so appropriate:
As one whom his mother comforteth, so will I comfort you; and ye shall be comforted (Isaiah 66:13).
Autumn is sleeping right now. Her stomach is awake, but nothing has passed through. She has been begging me for water. This has been very difficult to deny her. As soon as her stomach and small intestine start moving, she can drink. Please pray that they work over night so she can drink by morning.
Blog Entry – March 17, 2006It is Thursday morning and we just got back from an ultra sound to see if there are any blockages that would prevent her from her bowels moving. Everything looked good. Her belly is very large and uncomfortable. It is pure torture to make her walk, but that is really the only way to get the gas and bile out of her system. She has been changed to potassium chloride IV. She is very thirsty and still dizzy.
If her bowels don't move by tomorrow morning (which will be the 4th day), then Dr. King is considering a Pic line to give her IV nutrition. Our prayer is her bowels move today.
The nurses at this hospital have been wonderful. The cards, gifts, and balloons, food, money and gas cards are such a BLESSING. Words do not truly express how our hearts are overflowing with thanksgiving to have so many giving and praying friends from around the world. Literally :) The Lord truly is good.
I need to count my blessings so much more than I do.
We go for an x-ray this afternoon. Michael is here for the morning and afternoon. He couldn't come earlier because of the children being sick. We did not want Autumn to be exposed to ANYTHING. God Bless you all.
We had an x-ray at .... This was a comparison to the one on we had on Tuesday evening. It showed a very sleepy bowel. So. . . we have been walking and walking. I say walk, but I walk; Autumn drags. :)
This evening we had visitors just as we were taking our walk. She perked up, started smiling, and walked farther with out a murmur of complaint.
When we got back in the room we heart this loud noise; it was some air and bile coming out for the first time!!! YAAA!! Her IV infused into her hand so we needed to get another one put in (this is the sixth one so far) so she was unhooked from her pole.
We told the nurses we were going to sneak out now! :) We did go for a long, long walk. All the way down the hallway and back.
Again some air was passed. According to the Doctor, this will take a couple of days to get her belly to where it should be. We are still considering putting in a Pic line to do TPN because she still will be NPO or clear liquids for a while.
Please continue to pray for the upward road out of here. I am VERY tired. Praise the Lord for Christian friends. Just today, someone came and did my laundry, bought my supper, brought me muffins and snacks, gave me some good music to listen to, gave us fuel card, and money. That was just today! Thank you all.
Blog Entry – March 18, 2006Praise the Lord!!! After our marathon walk yesterday, Autumn's Bowels started emptying. As of right now, 750 ml drained and more to come. Anybody that knows Autumn knows she likes to talk.
Since Surgery she HAS NOT. Now she talks non stop. The nurses said, "I didn't know you could talk!"
Autumn loves all the nurses here, but a young night nurse Jenny has been a special blessing to her. I think it is because Jenny is bubbly and cheerful all the time. Another of her favorites has been Misti who we had the first couple days post op.
Amy was the one who was so patient in putting the Foley catheter in. Amy basically stood for about 20 min waiting for Autumn to relax so she could put in the Foley. As soon as Autumn fell asleep, in it went. All the nurses here have been wonderful to her.
Today she gets clear liquids. So she asked for well water. Kristy had brought some to the hospital two days ago but Autumn couldn't have it yet. Autumn does not like the taste of city water. I think I've raised a country girl!
Blog Entry – March 19, 2006It is four in the morning of the day we are supposed to leave. We are up because the nurses are changing Autumn's bed. Something that was not told to us was that she will have drainage from her bottom even through she is not "hooked up yet". This is involuntary and embarrassing.
We had been through three pair of pj's already on Saturday. I told her maybe we could wear something to help until it stopped. Does it stop? I really am just learning. I don't know.
So much we are still learning about This is one of the embarrassing things we talked about. I think her bed is done know. Time to get some more sleep!
Going Home! This may come as a shock to many, but Autumn is going home. She is eating solids and drinking fluids. It surely is amazing how fast children can bounce back. She is adjusting to her ostomy pretty well. We got set up for supplies to be shipped to our home. I am more nervous about going home than she is. Children do not dwell on the future; they just live day to day. She has accepted this pouch as a way of life it seems. She is emptying it herself and need minimal help. Changing the wafer will need my help, but the day to day stuff, she can do pretty well herself. There are still some embarrassing things we talked about. She is going to have to deal with this little by little. Her trust needs to be our Savior.
She is only on Tylenol right now. This seems to be taking care of any major discomfort. She says it hurts, but not like it used to (whatever that means).
Today, Sunday, is the day of departure. My husband will leave right after the service to pick us up, so he can get back in time for the evening service at 5:00 p.m.
Autumn may be feeling better, but I am ready to crash. I can not wait for a soft, warm, comfortable bed.
Blog Entry – March 20, 2006 (Michael)Early in the Morning. I am writing to ask everyone to pray for Autumn. Last night our first night home, Autumn started getting sharp pains in her side, bringing her to tears. At first we thought that there might be leakage associated with her bag getting on her skin. But after this was changed, she continued to moan and groan throughout the night.
A good friend of ours, who has had a similar surgery, suggested that she lay on her side. This seemed to help some. We are thinking that it may be gas pains—which can be very painful—from something she ate. Of course, Sunday was the first day to eat regular food again. We are being careful and trying to give her only soft foods and her water intake is good.
Later. Cassandra just spoke to me and Autumn's pains are getting worse. She has called our doctors but have yet to hear anything back. Please pray right now that the doctors will call and we will find a solution to this sharp pain situation. They didn't send her home with any pain meds, so maybe we need some at this time. Thanks for praying.
Blog Entry – March 20, 2006Well, we are back at the hospital.
Long story - I'm too tired to go into it. Short version: She had a possible obstruction of the small intestine or a starting of an ileus (the slowing or stopping of the bowel). She had an x-ray showing her stomach 4x its size and a lot of air in the right hand side of her stomach (this is where all her pain was coming from). We are here until at least Wednesday. Her surgeon is out of town maybe until Wednesday. We are all very tired. Autumn is ready to feel better soon and I am ready to see my babies.
Letter from a an Unknown Friend:
Dear Cassandra & Autumn, You don't know me--Dayna Ice [Autumn's Aunt] gave me your web site and address. I teach 2nd grade at Westgate Christian School in Spartanburg, SC where Dayna taught last year. I have followed Isabelle's progress on line daily and prayed for her.
I was diagnosed with ulcerative colitis in Nov. and Dayna told me about Autumn, so I have been praying for her, too. Right at the time of Autumn's surgery the Lord specifically burdened my heart to pray for her. Our teachers are also praying each morning in our prayer meeting before school starts. I'm sure you all do not have answers for "why" all this has happened. As a mom, I know it is very hard to watch your child suffer. I have been there, too, and have known firsthand that God gives us grace and carries us through even the most difficult of circumstances.
But God is sovereign and He truly is in control. Autumn has been created for His glory--and it sounds like you are training her to do just that because all of our hearts have been greatly touched by the faith and trust of this 9 year old girl--and the testimony of her godly parents!
It reminds me of the little lad who gave Jesus his bread and fish--and oh, how God used that little boy's unselfish gift! I know that this illness and surgery are not Autumn's choice, but God is getting the glory from her young life.
Please let her know that her suffering is not in vain as far as the rest of us are concerned. We can only hope to be as courageous and trusting as she has been through all of this. I hope and pray that better days are ahead and that Autumn experiences anew and afresh the faithfulness of God each morning as she awakens to a new day. God has a special and wonderful plan for her sweet life.
"...Fear not: for I have redeemed thee, I have called thee by thy name; thou are mine. When thou passest through the waters, I will be with thee; and through the rivers, they shall not overflow thee: when thou walkest through the fire, thou shalt not be burned; neither shall the flame kindle upon thee. For I am the Lord thy God...Since thou wast precious in my sight, thou hast been honorable, and I HAVE LOVED THEE...FEAR NOT: FOR i AM WITH THEE. (Isaiah 43:1-5)
I will continue to join with you all in prayer for Autumn.
Love in Christ,
March 20-21, 2006
I apologize for not writing sooner. We were admitted again on Monday evening the 20th . By Tuesday evening the 21st she was writhing in pain. Around 8:00pm, the nurse practitioner ordered an x-ray and an NG tube (plastic tube inserted in the nose to the stomach).
The NG tube suctions all the air and stuff out of her gut. Her stomach was pretty distended again. This afternoon the Wednesday the 22nd , they took another x-ray. All the air was sucked out.
The question is this: Why is her stomach and small intestines not emptying like they should? This is what the Doctor wants to find out.
Autumn has lost a lot of weight because she really has not had much to eat for 2 weeks.
The plan: The Doctor ordered her NG taken out this evening; she is to have nothing by mouth; and in the morning take another x-ray to see if any more air is in her stomach. I do not know any thing else.
Please continue to pray for my mother. She has had vertigo that is causing her to feel dizzy and nauseated. She also is still taking care of my three babies. I miss them soooooo bad
Thank you to all who have loved, bathed, and cared for my other children. Thank you for doing my laundry,cleaning my house, calling, and writing.
The Lord has put me in contact with a lot of other moms who are struggling more so than me. May I be a testimony of Christ!
This morning, Autumn developed a fever. It spiked at 103.8.
Not Good. No one knows why as of yet. We ice packed her and gave her Tylenol and tordal. Now down to 100.8. Please pray for protection and wisdom for the doctors.
This is the verse I meditated on all night long. "Trust in the Lord with all thine heart and lean not unto thine own understanding, in all thy ways acknowledge him and he shall direct thy paths. "Prov. 3:5&6
Thursday March 23-14, 2006
It is thrilling to know that the Lord hears and answers the prayers of His people. We praise our Savior for you all who have interceded for our daughter. He is a great God! They were able to bring Autumn's fever down and she was pain free the rest of the night last night.
With her pain gone (this morning, Thursday, March 23), he ordered the tube removed from her stomach, which immediately perked her up. The IV also came out and so Autumn has been doing very well all day today on clear liquids. Yet I am cautiously optimistic because we were in this same position last weekend. She was allowed to begin soft foods this evening and will continue with regular food tomorrow.
This is where we see if the same problems arise again; please pray that Autumn can eat food without intense pain and that her stomach empties properly.
Thank you all for your continued prayers. Thanks too for understanding that we are all tired and have found ourselves focusing more on Autumn rather than getting this site updated as quickly as we would like. Thanks for your understanding
We are going to stay one more day until the Doctors are for sure she can maintain her inputs and outputs the same.
To back up.....
On Wednesday March 22nd evening, Autumn was in a lot of pain from 10:00pm - 2:00pm Nothing they gave her seemed to work. About2:30am she developed a fever. The fever continued to climb until it reached 103.8.
We did a lot to try to get it down. Interestingly enough, during the fever, her pain in her belly disappeared. When the fever came down around 5:00am, some very putrid smelling stuff came out in her ostomy bag.
After that she has been pain free ever since. Maybe the fever loosened up whatever was obstructing her small intestine. No one really has an explanation for it.
I really don't need one; I'm just glad she is feeling better.
On Thursday she felt very good because she was pain free. The only concern on Thursday was the large amount of output in her ostomy bag.
Her IV was leakingÂ Thursday afternoon. They decided to leave it out to see if she could keep up on her own with just drinking by herself. She and I slept for the first time that night.
Friday morning the 24th she got up to go to the bathroom and blacked out. Autumn was pretty scared about that.. She was obviously dehydrated. Her pulse was at 135 and she was feeling very dizzy just sitting in bed.
Around 10:00am They tried to start an IV to replace the fluids she lost. Because she was so dehydrated, it took until 3:30 to finally get one in. Now she feels very well.
My little babies are coming home tonight. My Mom and Dad are going to stop by the hospital to see Autumn and I.
Thank you for praying and showing Christ through all your actions. He alone will be glorified.
March 26th 2 1\2 weeks after surgery...
Sunday afternoon, Autumn came home. She was feeling well and was having no pain. She even joked about being able to go to school on Monday. We told her Monday was a little soon, but we would see how she was doing; maybe she could go later this week.
Our three youngest children came home Saturday evening so I had all 6 of them that night. I gave baths and was up early Sunday morning to get everyone ready for church. We were all looking forward to having the entire family under one roof again.
After the evening service, we enjoyed being "all together" for the first time in 2 1/2 weeks. The noise level made it clear that the De Leon's were all home :)
Monday March 27-28 2006
However, Monday (yesterday) moved us into uncomfortable territory and, not unlike Peter, I was surprised by how unprepared and weak I was. Autumn lay around most of the day. She never complained of pain, but was acting somewhat tired. Cassandra decided to take her temperature &"just to see".It was 99.
No problem. She took it again later and now it was just over 100. Still, she was not too concerned. But eventually, it reached 102.8 and she decided it was time to call someone. We were told to give her some Tylenol and to bring her in to Children's (in Columbus) for a CAT scan.
Only being 2 weeks post-op, they needed to make sure there was not an abscess of any kind. My heart sank as we made arrangements to make this happen. (Praise the Lord for two young ladies from Wisconsin who had come to help us when Autumn came home. They were already there to stay with our children!).
We were told to go to ER and so we arrived and sat. I have to admit that I was frustrated having to wait when all we needed was a test done, but Autumn's GI doctor came down and spoke with us and I was encouraged.
He said that the ER was the fastest route to a CAT scan. After about an hour and half, we were seen by the ER physician and she was very thorough and helpful; the Lord even put us in a new ER room! Autumn was given a contrast solution to drink for the CAT scan--which took a couple of hours--and the results did not show any kind of an abscess.
This was good news. By the way, her fever had come down to 99 something, but she still had one. However, the test did show some inflammation. [So, they decided to admit Autumn for the night.[
They wanted to watch her fever. Everyone was hoping that it would just be a virus or maybe even a urinary tract infection at the most.
Again, my heart sank but Cassandra was so good to remind me of what I had been reminding Autumn of earlier: "we are on a road that the Lord has put us on" and w"hat time I am afraid I will trust in Thee"
By this time it was nearly 10 p.m. and Autumn had not eaten anything since lunch. I spoke up when someone mentioned clear liquids: I've been very concerned that Autumn is malnourished since her real food intake has been so little.
She hasn't eaten food for two straight days in a row. What also alarmed us was a fairly large bald patch on her head where her hair has just fallen out. The ER doc was so kind to bring us a sandwich and some crackers. Autumn also drank some water. Eventually, we made it up to the fourth floor. We had done this exactly one week ago.
["Lord, what do I still need to learn here? How is it you want me to grow through this?"
After we were settled in, the surgery doctor came in (one who works with the doc who did Autumn's surgery). He concluded that it was best to put Autumn on some antibiotics to deal with the inflammation and that we probably needed to address the malnutrition with a PIC line (sort of an IV directly into an artery to which they add nutrients directly).
"How long are you talking about?" Cassandra asked. "We probably need to keep her for a few days to allow the antibiotic to work."
Literally, my head dropped. This was not what I wanted to hear. Ashamedly, my trust in the Lord had been very weak the entire evening. I was tired and all of this made my own side hurt (I too have ulcerative colitis and they say it is affected by stress).
All I could think of was all of my responsibilities of my family and our church; at that moment, I wasn't quite sure how I was going to do it all. But even in my weakness, God's grace was (and is) more than sufficient. God knows what He is doing.
Later, as I lay on the couch next to Autumn's bed, I remembered how I had told the Lord that I was willing for Him to do whatever it took for me to take the next step in my walk with Him; to help me grow to be more like Christ.
Funny how I expected the Lord's pruning to come a different way. We spoke with Autumn and prayed for the Lord's continued help and strength. Please continue to pray with us--so many of you have done so and given so much to help us.
How I praise the Lord especially for our church family at Lighthouse; I don't know how we could do this without them. They are a true testimony of God's grace!
We will update with more information as we are able. Thanks for your prayers!
It has been a while since I have written. Michael has already said almost everything. I am ready to go home and stay home. When we left the hospital on Sunday, the nurses told Autumn if she came back she would have to clean toilets.
So when we showed up the next evening again she said as she was being wheeled in, "I'm ready to clean the toilets!"
At least she still has her sense of humor. She is truly feeling better today. The Doctors have her on antibiotics for the inflammation they found in the J pouch they had created during surgery.
Jessica and Kristin Hohl (from FallsBaptist Church) are down at our house on their spring break. They are being true servants. The Lord knew we would need them this week. They are helping to take care of Joshua, Melody, Carissa, Timothy, and Stephen. Kristy Holt is taking care of my precious little 13 month old Serenity.
I saw her one day on Sunday, and then I had to give her to Kristy because Autumn went back into the hospital Monday. I am thankful she can love Serenity like I would.
I am so glad that nothing can come into our lives without our Savior's permission.Â It is comforting to know we are in His hands. When things are good or bad my God is good and faithful.
"The Lord God is a sun and shield; no good thing will He withholdÂ to them that walk uprightly."
Autumn is getting a PIC line in today. This will allow me to take her home some time soon and give her the IV antibiotics myself. She will also get TPN in the evening. This will give her a boost of nutrition.
Autumn has a pretty big bald spot on the top of her hair from lack of nutrition.This is our third week here at Children's.Â We have gotten to know the nurses very well. Some of the chronic kids she has become friends with as well. I have gotten to know many of the parents and have been able to share my testimony several times.
Autumn is in good spirits. She is feeling pretty good. She told me being sick is better then being in a lot of pain. I think I agree with her a little.
Thursday March 30th, 2006 - Home again:
Autumn came home on Thursday. We had to time it right because the home health nurse was to meet us at 1:30pm at out home, which meant we needed to leave the hospital no later than 11:00am.
We returned home just in time for the nurse to teach me how to give Autumn her IV medicine through her PICC line. Everything has to be sterile because this is a central line. I give this to her every 8 hours. It infuses over a 30-minute time. Autumn is a little bit high maintenance. :) But we love her! :) She still seems to be running a small temperature in the evening, but nothing to be excited about.
It was such a blessing to be home two days in a row without going back to the hospital. I enjoyed doing laundry, dishes, sleeping and all the things that are "normal". Sleeping in a real bed makes you thank the Lord for mattresses! :)
Many of you heard about our Chevy Astro. Two Sundays ago on the way to church (Autumn was still in the hospital) my husband hit a deer. He would say the deer hit him. :) In any case, it squashed the front of the van pretty good. Because we had full coverage on it, the insurance came and gave us a check to fix it. We were able to take that money and purchase a really cool van using the check from insurance; we have no car payment!
Michael found a Chevy Venture with only 85,000 miles. This is our first car we have ever purchased. I consider it a cool van. Of course, it only is a second car because we have two more children than fits in that van. Timothy, my four year old, said Joshua and Stephen could sit on the ceiling. We still have the Ark. Maybe we should put full coverage on the Ark and look for a deer! Just kidding.
I say all that to say that the Lord is very good. Many times we think all the bad things happen at once, but the Lord has his perfect plan for us all. It is so comforting to know that the Lord is truly our shepherd.
Autumn and I are looking forward to church in the morning.
Sunday April 2nd and Following:
We had a good Lord's Day on Sunday. Autumn was in the service and even played her violin. We only had one miss-hap. She left the service and I followed her out to see what was the problem. Her ostomy bag was leaking. Not a good thing; especially if one is in their Sunday best. :)
So what do all good mothers do in this situation? You guessed it. I duct taped it. Pretty smart!! Autumn thought so!
Other than that one incident, it was rather an uneventful day. :) We kept her home from school on Monday. She went to school today for the first time in three weeks. She is feeling very well. She changed her bag herself at school and seemed to not have any problems.
She still gets her antibiotic in her PICC line every 8 hours. She wears a fanny pack to hold the medicine because it takes 30 minutes to infuse. She will be on the antibiotic until April 10th. On the 11th, she will have another CAT scan to see if the inflammation is gone. Dr. King will see the results right away to decide what our next plan of action is. If the inflammation is gone; PICC line will come out. If it is not gone; I am not sure what the plan will be. I have been having a hard time now that Autumn is home from the hospital.
Everyone is home now, plus Autumn is high maintenance. It sound silly, but Monday I felt like not doing anything, but quitting. I think I am still tired from all the stress of the last couple weeks. Life continues to go on.
As I reflect on that, I also think of a young couple we knew from college. Her husband has just been diagnosed with colon cancer that has spread to his liver. He is given only 6 weeks to live. Life seems so hard yet Christ tells us He and He alone is our strength and comfort.
When I get discouraged and tired and down, it is a comfort that the Lord is still my shepherd and I shall not want. (Ps 23) He also knows my thoughts afar off. There is no place I am that He is not. (Ps 139) My soul is quieted by resting in the Saviour. (Ps 131)
April 6th Thursday:
Thursday morning Autumn and I will be traveling to Children's to see her GI doctor. This is a routine check up post surgery. This evening, before we went to church, her wafer was leaking so we changed it. I have noticed some redness around her stoma. Now it really looks raw. During church this evening, her wafer was leaking again. We changed it again. This time she was really hurting. While we are at Children's Thursday, I am going to page the Ostomy nurse to look at it and see if she can give us some tips. It is not itching so I do not think it is yeast.
The Lord worked it out for us to already be going up there. While we were in the Ladies bathroom changing her wafer, big tears filled her eye, first because of the soreness of the area and second just because she would rather not have this to begin with. We hugged and I reminded her why we did this. Adjustment is hard. The biggest struggle is the day-to-day stuff for her. Thank you for your prayers. As Michael has reminded us, we are still on the road of recovery.
Well, what started out to be a routine quick check ended up to be a long day at Children's. We left the house at 6:00am to get to our 8:15 appointment. The doctor checked her out. Her heart rate was 145 bpm and she was dizzy. She was dehydrated so we stayed another 6 hours to give her 2 bags of fluids. Her pulse is still 120bpm. Everything else checked out well. She has a yeast infection due to her large amount of antibiotics. Because of the antibiotics, she is having a lot of stool output, which is causing her dehydration. More fluids are coming out of her than I was putting in her. We are now home :) Praise the Lord for he is good, his mercy endureth forever.
Friday April 7th, 2006
I kept Autumn home from school today. Last evening I had set my alarm for midnight to give her the medicine. I set it again at 12:30am so I could wake up to flush her line after the antibiotic. Then, at 4:30am her wafer leaked again so I had to clean her up and put a new wafer on. She fell asleep around 5:00am. She was very tired from the long day Thursday at the hospital and the short night sleep that evening.
She lay around most of the morning. I made her drink a lot of water. By noon, she was perking up a bit. By evening, she was playing very happily with a friend from school we had over to our home. Her wafer leaked again this evening. She has such a high volume of liquid stool coming out the wafer leaks pretty often. We are praying she can stop the antibiotic on Tuesday.
"Taste and see that the Lord He is good".
Monday April 10th, 2006
Autumn is feeling a lot better. Because of the many doctor appointments, she will not be going to school until Wednesday. I have enjoyed having her at home. She also has not seemed to fully master dumping her bag without a little help yet. Hopefully by Wednesday things will be better.
The redness and soreness around the stoma has lessened. The powder the ostomy nurse gave us seemed to do the trick. We are told that we only need to change her wafer once each week. But we are finding hers only lasts about three or four days; then it starts to leak.
Tuesday is the CAT scan. This is when we will see if we can take her PICC line out. Please pray!! She also seems to have some redness and a real small pocket of white pus near the bottom of her incision. We will be seeing the surgeon tomorrow, so he will address this as well.
We had a good Lord's day yesterday. I love going to church and hearing the preaching of His Word. That is why I love the three services. :) We are having a Bible Conference this week with Pastor Shawn Smith from East DeWitt, Michigan.
Everyone loved him and he was an encouragement to us as well. Please pray for visitors to come and hear the gospel.
Just for fun.... Timothy, our four year old, sang a main solo part in a song along with our other children. There is nothing more wonderful than hearing a child sing with all his might praises to our Saviour.
Tuesday April 11, 2006
As Michael said, we are back in the hospital. Life has been a whirlwind lately at the Deleon household. We had revival services with Shawn Smith and the Lord really blessed. Autumn and I were able to make it to the Monday and Tuesday evening service.
At 8:30pm on Tuesday evening, Autumn was in the car waiting for us to leave the church when she started feeling dizzy. By the time we got home she was clearly not feeling well. I gave her something to drink and tucked her in bed. We were up all that night. She just continued to get dizzier and soon became sick to her stomach because she was so dizzy. Then her fingers and feet went numb which made her more upset.... finally I called the GI Doc on call at Children's at four in the morning.
She said to go to the nearest hospital. We made a few phone calls and Kristy came to my rescue to sit with my children. It ended up she took my three little ones plus the little girls I baby sit, plus her own little girl. She had 6 kids under 5. (And people thought I was crazy) On top of that, she did half of my 10 million loads of laundry! :)
I';m sure all of you know about ERs. I knew that when we went, we would have to explain everything because they knew nothing about what we have been going through. I prayed quietly that the Lord would clearly lead us. The Lord is so good to answer a short prayer. I was so relieved when we arrived at Bethesda hospital ER. The triage nurse was a Christian who knew all about Autumn and had been praying for her faithfully.
I did not have to explain anything. Her little boy is in Carissa's first grade class. The Lord led us each step of the way. They gave her 1000ml of fluid and sent us home around noon. I called our surgeon and he ordered 2 liters of Lactated Ringer to infuse over 12 hours over night through her PICC line.
By Thursday morning, I thought she was really feeling well. Thursday night I gave her another 2liter of fluid. Again I was up all night with her. She had so much coming out of her bag we could not keep her wafer on. We went through at least 5 in one hour because they kept leaking. Water and tape not stick well. :) She was in tears and I was exhausted.
Plus I have an abscessed tooth that I'm supposed to get a root canal on Friday. By Friday morning she was exhausted and sick. Her temp was a low grade at 100.8. So....... now we are back at Children's to see why we are having so much liquid stool. Thank you all for praying for Autumn, but you need to pray for my poor husband :) he has all the other children plus he really needs to get ready for Easter Sunday. :)...more later.
Back in the Hospital:Friday, April 14, 2006
I'll fill everyone in on what has been going on recently in another post, but I wanted to write a short note to ask folks to pray. Autumn went back into the hospital in Columbus today (Friday, April 14). Basically her output has been abnormally high--it's really all "water" now--and no one seems to know why. This, of course, leads to dehydration and causes all sorts of problems. Please pray we can see this issue resolved.
April 15th Saturday:
Autumn was very low in Potassium last night. They gave her some through her IV. Any time they do that you have to monitor very well. They had the electrodes on her chest to read her heart and the blood pressure cuff on her arm so it would read every ten min.
The nurse told us, "If you feel dizzy, funny, tingly, or have chest pain let us know."That makes you feel good huh? :)
She slept well last night. This is the first nights sleep I have gotten in a long time. Funny to hear me say that about the hospital isn't it?
We are praying that they will let us have a day pass for Easter services. We could leave here around 8:45 to make it in time for the Sunday morning Service. We would have to return right after the service. She wants to wear her new dress and play in the orchestra at church. The doctor will be in soon and we will ask him. God bless you all for praying. What a comfort to know we are in the Lords' hands and nothing can pluck us from that resting place.
Later...Home again Sunday April 16th:
I apologize for not updating sooner. I do not have access to the Internet at home unless my husband brings his computer home. We are now home.. We came home on the eve of Easter.
Autumn and I walked in the door at 9:00pm. Autumn was able to go to Easter services and wear her new dress. She even played in the orchestra.
We then left after the service and traveled to my parents for a one night stay over. The children did not have school on Monday. What better place to go to catch up on sleep than at your parents home! I slept in and took a nap!!!
Steve Pedit and His team were doing a revival at my parents church, so we were able to hear them sing and preach. The music was just a little bit of heaven.
Autumn went back to school on Wednesday. I woke up with the flu. I have not been that sick in a long time! On Thursday Autumn and I went to Children's again for a scheduled GI appointment.
We were supposed to be there at 7:15 am. Yes, if you do the math, we had to leave at 5:30am. That was a little to early for me!!!
The GI doctor said she looked good. Then we went for a scheduled CAT scan of her J-pouch. The surgeon wanted to make sure there was no infection. It came back looking great. Then we saw the surgeon. He had the nurse take out the PIC line.
Now she is free!! We scheduled the second surgery for June 7. I am not looking forward to doing this again. From what I have read, this is sometimes harder to recover from than the first one. Also I am just for the first time settling down to a routine. You know it is bad when my son Joshua asks me when I am going to cook a real home cooked meal! :) It has been a long time since I have been able to be a mom.
The Lord is so good to us. Thank you for praying for us. God's faithfulness and love is seen through His people.
Life Goes on:
Life has gone back to normal for the first time in six weeks. Monday was the first day of regular life. What a blessing to wake up knowing I was not expected to be anywhere but at home with my children. It sure makes me appreciate staying at home.
Autumn has her ups and downs. Her body is still adjusting to the change. Most of the time, her output is watery. We are praying it will thicken up so when she has the surgery she will not suffer so much watery diarrhea. We are told it takes up to a year to really regulate her body. She could go to the bathroom as much as 12 times a day until that pouch stretches and she learns to hold more.
Another problem we are having is Autumn is still having accidents at night. When the surgeon created to j-pouch the first time, he made it so all he had to do is hook her up the second surgery. Her pouch therefore is alive and still secreting juice.
In the day time she feels as if she has to go to the bathroom, but she can hold it until she finds a bathroom, but in the night time when she sleeps she can not hold it so she will have an accident about every night.
My biggest concern is when the surgeon hooks her up again. Will she continue to have accidents every night? This time it will not be just intestinal juices; it will be the real thing. She wants to have the surgery. She does not like the pain and inconvenient of the ostomy bag. Just last night she was crying because it had leaked and had burned her skin. The stool is still pretty liquidity. This stool because it is from the small intestine is very acidic.
On the funny side... We have another guest staying in out house. A mouse!! I saw him again last evening. He ran across the kitchen floor and I jumped on the kitchen table. He was under the table and I was on top of it. Joshua and Autumn were just as jumpy as I so they were no help. I snuck down to grasp the broom as he ran into my living room. Now.... my living room is my domain. I stood on the table and guarded the entrance to the kitchen ready to beam that mouse if he showed his head. Of course, my hero husband was not home. I called him from the top of the kitchen table with my plan. You either kill this mouse or I sleep in the prophets room at church... :) (He knew I wouldn't do it) (Its dark and scaring down there as well.)
I stayed on that table until he came home!! We did caught one mouse. I know there is more because the other trap was licked this morning. Who ever we killed had family!!:) Well, never a dull moment at the De- Leons!! Thanks for praying.
Sometimes at night when you awaken out of a deep sleep you start to think. Most of the time, all the fears of life come pouring in your mind. I have found myself in this situation many times. Last night was another one of those times. The only way to not let fear overcome me is to rest in my Savior. Which usually means I start quoting scripture. I usually start in Genesis and work my way through the Bible until I can fall asleep.
The one verse that continued to flood my soul was
Ps 13:5 "But I have trusted in thy mercy; my heart shall rejoice[in thy salvation"
What a comfort that I can lay all my burdens at His feet and then I can rejoice. In my case I can rest. Autumn woke me up last night with a problem. We had pizza for supper from dominoes. (Not very nutritious huh?) The pizza must have caused a lot of gas, because at about 4:30 this morning her bag exploded!! She had a good attitude about it. We chatted as I cleaned her up and changed her wafer and bag. We laughed together about not eating pizza at 7:30 at night any more. Maybe we should only have it for breakfast!! :)
I am thankful for her spirit. I probably would have not been a cheerful. Before I went to bed, I went into the kitchen. Low and behold there was another one of our resident mice... DEAD!! Yuck. He died a horrid death...blood everywhere...YUCK!! This was probably the widow of the last mouse. Before he died, he had eaten the first trap without getting caught, but the second trap...off with his head. :)
It is 2:00am. I am up because Autumn had another explosion. What I mean by that is, she had so much gas in her ostomy bag that it could not handle the pressure. Therefore, it got stool all over her and her bed. So I have just finished cleaning her up.
We went to the doctor yesterday for a routine check up. She is gaining weight fine and growing. She does not seem to be having any problems. The only thing we need to do is not eat so late and try to find foods that do not produce so much gas. We also need to find foods that will help her stool bulk up a little bit.
Thank you for praying for my Autumn and the whole family. It is so wonderful to have a "family" in the Lord who I know is lifting us up in prayer.
On a lighter note, Autumn was asked by the hospital to be on the cover of Heart Beat Magazine. This magazine is the children's hospital one for southeastern Ohio. She has her photo shoot on May 18th. I told her that now she was going to be the cover girl for Children's Hospital.
It is wonderful that His mercies are new every morning and not monthly. I am so thankful for the Lord's constant presence in my daily life. Sometimes just the daily tasks of life can be overwhelming...laundry, meals, violin, piano, school, church... and all that goes with it. The Lord is good to care about each of those "regular tasks" and to give strength every moment.
My husband describes this time as the "lull before the storm" We were told by the doctors it could take up to a year for Autumn's body to "recover" when Autumn has her second surgery. What I mean by that is, she will be having to rush to the bathroom every 5 seconds.
They also told us that sometimes she could get what is called pouchitis. It is when the pouch the surgeon made inside her gets infected. Our prayer is that this pouch works for her for the rest of her life. She does have a small chance of her colitis coming back because they kept about 1 inch of her large intestine to help hook up to her rectal muscle.
If you are still confused about all this, do a Google search on J-pouch and you should get some information. If you click on a Google image, I think it explains the surgery with pictures.
Autumn is doing as well. She is caught up in school, riding her bike, playing her violin, and being a good helper around the house. I am savoring every moment of good times. By the way, I think the mice moved out when they saw their family being executed one by one.:( We are safe right now from the big bad mice.
Psalm 73:26 My flesh and my heart faileth: but God is the strength of my heart, and my portion for ever.
Psa 73:28 But it is good for me to draw near to God: I have put my trust in the Lord GOD, that I may declare all thy works.
Sometimes life can feel a bit overwhelming. You know, for all you mothers out there, cooking cleaning, laundry, music lessons, garden work, soul winning, Sunday school teacher, chauffer, changing diapers, doctor's appointments.
Then on top of that if you have to work outside the home!! Then with all your normal duties the Lord throws in a sick child, mother, father, husband. Need I go on? Fill in your own list. We want to throw in the towel!
We ask ourselves in our arrogance,
"What would they do without me?"We want to say with the Psalmist,
"And I said, Oh that I had wings like a dove! For then would I fly away, and be at rest.
Then I consider, do all these burdens really belong to me? Should all the burden of life really fall on my shoulders alone? Jesus gives us this answer in Mat 11:28 and 29 "Come unto me, all ye that labour and are heavy laden, and I will give you rest. Take my yoke upon you, and learn of me; for I am meek and lowly in heart: and ye shall find rest unto your souls."
I will have rest, not just physical rest but rest in my soul. I liken it to jumping in the hands of my Savior and letting Him hold all my burdens, and myself, then I truly find rest.
Psa 16:9 says "Therefore my heart is glad, and my glory rejoiceth: my flesh also shall rest in hope.I can have a confident expectation that I can find rest in Christ and in Him alone."
I am very sorry for not updating sooner. Autumn is doing very well. She is running, playing, teasing. Playing her violin, helping with her baby sister, and going to school. She looks great. I had forgotten how bad she used to look. We were looking at pictures from one year ago. It was the night she was baptized. She had dark circles under her eyes and she was very very thin. Her little arms looked like sticks. As I look at that picture, I can't believe how much I didn't see it.
Now, she looks like she did when we used to live in Wisconsin. She has her cute cheeks back, (the healthy kind, not the prednisone kind), she is not on any medication at all, and she has grown almost 1 inch. We praise the Lord for leading us every step of the way.
The Second Surgery: June 8, 2006
Now.... We are not done. She has her second surgery scheduled for June 8th. She is admitted on June 7th to do a bowel cleanse! She says this is the worst part. She told me she probably would not have to drink as much because she no longer has a large intestine. That is one way to look at it.
One of the reasons I have not updated is because my life has been a little on the busy side. My husband was pretty sick these last two weeks. My heart goes out to all the single moms. I felt like I was taking care of 8 people day a night. (Actually, I was :) My husband's right ankle and left hand had been swollen for no apparent reason. He was crawling on his hands and knees, that's how bad it got.
This lasted for about 4 days. Then he got a high fever and ended up with that hard respiratory flu. This resulted in a secondary infection that we needed antibiotics for. On top of that I spoke at a ladies retreat in West Virginia. I left my sick husband with 7 lively children.
Needless to say, life has been one crisis after another since Autumn's surgery in March. Things are going normal now. School is almost out. I am looking forward to having the children home!!
Is not the Lord so good? Please continue to pray for her upcoming surgery. She is supposed to be in for 1-2 weeks depending on how well she does.
Isa 41:10 Fear thou not; for I am with thee: be not dismayed; for I am thy God: I will strengthen thee; yea, I will help thee; yea, I will uphold thee with the right hand of my righteousness. Isa 41:13 For I the LORD thy God will hold thy right hand, saying unto thee, Fear not; I will help thee.
I had a good talk with Autumn last evening. She has resigned herself to wear pullups at night. She still has a lot of trouble at night. Thank you for your prayers. She revealed to me that she is scared... scared to do this again... scared of the pain. But we both acknowledged that in the long run she will be better off. We both agreed this is God's plan for her.
A sweet, Christian, teen young lady, who has been very kind to write encouraging notes to Autumn, will be having her second surgery on May 24th. Her name is Amy. Please pray for her as well.
One thing this whole ordeal has done is draw me closer to the Lord in prayer and revealing to me how many little ones and older ones are hurting. Someone has a broken heart somewhere just waiting for the gospel to shine forth.
A very wise Missionary told us once, "Go after the broken hearted and the needy first... they are ready and ripe to receive Christ."
Oh how true that is!
Psa 145:8 The LORD is gracious, and full of compassion; slow to anger, and of great mercy. Mat 9:36 But when he saw the multitudes, he was moved with compassion on them, because they fainted, and were scattered abroad, as sheep having no shepherd. Jud 1:22 And of some have compassion, making a difference:
Hi,remember me I was really sick. I didn't really like it. I had to have a N G tube. If you don't know what that is I will tell you. It's this tube that looks like a big straw. And It didn't feel very good. They put it in my nose. When they put it in I gagged threw up.
My sickness did no good at all. It made me go to the bathroom a lot. And I was bleeding to. I got really skinny and then they put me on a lot of medicine which made me chubby. I didn't like it.
My 2nd surgery it is the 8th and I will go in the 7th. I go in the 7th because I have to drink that nasty stuff. That cleanse out my tummy. NASTY! NASTY! NASTY!
Tuesday day evening the later part of May, I was watching my children and some other children playing on the new playground at church. The families were out on visitation and I was the designated babysitter. As I was sitting, I was reflecting on how I take for granted the joy of children's faces.
Autumn was swinging, then running up the ladder to go down the slide. At one point Melody and Autumn collided at the base of the slide and started giggling and rolling around like two bear cubs. It is times like these I try to file in my memory bank to recall later when she is not feeling well.
All too often I go throughout my day busy in all my "duties"yet forgetting the most important job of all... the time spent with my children. Teaching the Word of God: how to live it and how to obey it, yet having fun as well.
Children are a great reminder to enjoy every day the Lord has given us; whatever the day brings forth. Plus, if I laughed as much as they did, not only would I enjoy myself more, but I would probably lose some weight!!:)
Psa 118:24 This is the day which the Lord hath made; we will rejoice and be glad in it.
Well, the count down is here for Autumn's second surgery. I talked to Autumn last evening; she is ready. I, on the other hand, am not ready. I can't help thinking about the long nights and all that we went through before. . .
Our web site was down for a week or so. About a week ago, Autumn was bleeding again. We ended up in the hospital overnight and the doctors sent us home with an antibiotic called Flagal. She developed a low-grade fever about three days later. She seems to be feeling better now. Tuesday is the clear liquid day. We have to be at the hospital on Wednesday at 7:30 am. She is scheduled for a CAT scan to see is everything is okay. If everything looks good, then we will be admitted for the clearing out part. Thursday is the day of Surgery. I will go in more detail later. My children need to be fed! Thanks for praying.
Another Hospital visit before Surgery:
On the Friday before Memorial Day Autumn was put in the hospital overnight because she was bleeding every hour or so from her rectum. If you recall, when she had her first surgery, the Surgeon created a pouch at the end of her small intestine. At this time, the pouch is not being used because it was healing. She has an ostomy as a diversion.
I say all that to say it was odd that she was bleeding because the pouch is not even being used yet. The Doctors told us it was probably what is called Pouchitis. This is inflammation of the pouch. (Even I could have told them that J). Since that time I have noticed a subtle change in her behaviour. It has been so gradual that only a mother's intuition would even detect any changes at all. She has seemed to tire easily and she does not play like she used to. She lays around a lot more.
Tonight I got out a picture that was taken of her two weeks ago, she looks a lot thinner now. I also noticed this evening that her clothes are hanging on her so I told her to step on the scale. According to our scale she has lost about 5-6 pounds. This obviously concerns me. I plan to call the surgeon and her GI Doctor tomorrow just to let them know my mother's intuition.
The Surgery she is having on Thursday is to hook her up to this Pouch and see if this will work so she could get rid of her ostomy bag. The doctors told me again last week that Autumn will have about a year recovery before we see any great results from the surgery. I do not want this surgery if she is not 100 percent.
The Lord is ultimately in control as He always has been and always will be. Please pray for peace and wisdom. I am not prepared to leave my children and start this road again. Please pray for the Surgeon and all of his Residents and Fellows that work with him. Please pray for courage and strength for Autumn. Please pray for my other children, as they are bounced around and that they continue to love the Savior. Please pray for my husband, as he is Mommy and Daddy
Rom 8:26 -31 Likewise the Spirit also helpeth our infirmities: for we know not what we should pray for as we ought: but the Spirit itself maketh intercession for us with groanings which cannot be uttered. And he that searcheth the hearts knoweth what is the mind of the Spirit, because he maketh intercession for the saints according to the will of God. And we know that all things work together for good to them that love God, to them who are the called according to his purpose. For whom he did foreknow, he also did predestinate to be conformed to the image of his Son, that he might be the firstborn among many brethren. Moreover whom he did predestinate, them he also called: and whom he called, them he also justified: and whom he justified, them he also glorified. What shall we then say to these things? If God be for us, who can be against us?
Countdown Wednesday June 7th, 2006
We are now in the hospital. We got here about 7:30 this morning. The Surgeon ordered a full body CAT scan to see if he can find a reason for Autumn's weight loss. As of 11:00 we have not had anything done except for an IV put in. We are hoping things will more a little quicker. Autumn received a Wheelchair for her American Girl Doll from our church. She was so excited she was bouncing in her bed :) We love you all.
Wherein ye greatly rejoice, though now for a season, if need be, ye are in heaviness through manifold temptations; that the trial of your faith, being much more precious than of gold that perisheth , though it be tried with fire, might be found unto the praise and honour and glory at the appearing of Jesus Christ: I Peter 1:6-7
June 8th, 2006
This morning as I awoke on the wonderfully comfortable couch the hospital so graciously provided, I needed the Lord to comfort and encourage my soul. I turned to my normal Bible reading and this is the passage I read.
When Autumn awoke, I read this to her as well. She commented that maybe God would make her different inside as well as on the outside. That was simpler of an explanation than I could have given. Autumn finally had her CT scan last evening at 5:00pm. If you recall, we came in at 7:30am for this.
The preliminary results came back looking good so we proceeded with the bowel prep. She had to drink 250 ml (8oz) every 30 minutes until she was clear. According to the nurses she was the only kid in this hospital in a long time that has drank the stuff instead of having it put in an NG tube down her nose.
She cried, took deep breathe, cried some more, said "I can do this", then gulped in down in one long swallow. She did this every half and hour starting at 6:00pm. Autumn told me that at least she doesn't have to sit on the toilet. :)
At least she still has her sense of humour. She also said that when she grows up she will never ever come back to this hospital and do this again.
Because she does not have a large intestine, she did not have to drink as much as the normal kid would.
Autumn said,"After much prayer, I DID IT!"
After prayer together, we are going to proceed with surgery although we are going to have her start drinking some things that we have been looking into. This drink is supposed to help her recover faster. I'll say more of this later.
Autumn's surgery is scheduled for 1:00pm today. She will be taken down at noon. Although she is being very courageous, at the same time, she knows more about what is going to happen to her after surgery. For this reason tears come a little more often. They are sad tears not tears of anger. Tears and sadness are hard to handle for a mother. We comfort each other knowing that she will no longer have to have an ostomy if this pouch the surgeons created will work. Thank you for praying. May we be to the Praise of His Glory!
Surgery went very well today. Her doctor told us beforehand that everything looked good and he felt that the surgery would not take more than a couple of hours. Cassandra and I were able to go back with her into the "holding" area just before they took her back for the operation.
We spent time reminding her to trust the Lord. It was heartbreaking to see her on the verge of tears. She told us that she wasn't scared...she just didn't want us to leave.
She said, "I wish there was a window so you could watch me the whole time."
Surprisingly, the doctor came out after only an hour and told us that everything went very well. The pouch looked good and, although she is in pain, she is doing quite well. The morphine pump helps too.
We'll give more of an update later, but wanted to give an update and thank you all for praying. The Lord is so good!
June 9, 2006
Last evening, Autumn could not go potty; she tried until 12:30am with tears. Finally the nurse had to put a Catheter in. Of course, that was very traumatic. She obeyed but it was very hard for her to have to have that put in.
This morning it was taken out. By late afternoon she went potty on her own. Praise the Lord! Autumn did very well to day. She walked about 5 times today. She is still pretty weepy, emotional, and very tired. I think partly this is from the Morphine she is on and partly from the surgery.
June, 9th, 2006
This evening she has a fever of 101.5. Her belly is getting distended as well. Her tummy has not woken up yet. This is the beginnings of what is called an ileus. If she does not pass any air tonight they will do an x-ray in the morning.
When Autumn heard this she had large tears in her eyes. The fear of an NG tube is so strong because of her memory of the last surgery. We are holding up pretty well. My emotions go up and down. Everything looked so well and now this.
This is when that little fear tries to take over in my heart. It tries to crowd out the trust on the Lord. But my mind knows the Lord is in control of all our lives. He is directed our path. Proverbs 3:5-6.
We praise God that Autumn has been doing well following her surgery. However, as of a couple of hours ago (about 7:30 p.m., Friday, June 9), Autumn has developed a fever of about 101.5 and is complaining of having a bloated stomach.
The nurse practitioner has said they will take x-rays if she does not pass anything soon. So, please pray that Autumn's bowels wake up soon and that her fever will go down.
We certainly do not want any serious complications developing. Also, pray for Cassandra, she is tired and feeling quite lonely.
Pray the Lord will give her strength and show Himself strong.
June 10, 2006
Autumn had a fairly good night. Her temperature is down to 99.8. Her tummy is still a little bloated. As of this morning she has not passed any air. I am a little concerned because they gave her a regular breakfast this morning. Autumn is in good spirits and is hoping to feel better soon. She told me Wednesday that she never wants to ever ever come back here again. She said she loves the nurses but not all the stuff that goes with it. Please pray for wisdom for the doctors and for healing for Autumn.
June 11, 2006
Autumn's tummy has gotten bigger and rounder. This makes it more difficult to walk and is very painful. She is now having gas pains which is so discomforting to her. The Pain team took her off the morphine pump and is now giving her oral pain meds.
She ate eggs for breakfast and yoghurt for lunch. Now her belly is really full. We took a long walk to the playground on the 3rd floor roof. She did not want to be there at all so we walked back to the room. (She was teary-eyed and a little grumpy. When we got back on the floor the Nurses decided to have her not eat or drink for 4 hours to give her belly a break.
Please pray. Autumn has another fever this evening. Right know it is 102. She is writhing in pain. She got up to go to potty and she vomited. She is now NPO (nothing by mouth) until further notice. Her belly is huge. I feel like I have done this once before.
They gave her Tordal and morphine for pain as well as some anti-nausea medicine. Please pray for some sleep for my little girl. I could use some as well. I know this will pass, but the process is hard to get through.
Praise the Lord for His strength and goodness.
Thank you for your prayers. Autumn had her x-ray and it showed a very large amount of air in her stomach and small intestines. This is caused by an Ilies - a slowing or stopping of the intestines. This was what was causing so much pain and agony.
She did have to have an NG tube put down her nose to suction all the air and bile out. Bless her heart, she knew this was coming and was bravely crying. But... now she feels so much better. The NG will probably stay down for a least another day.
Even with the NG in, Autumn began having pains again and then started throwing up. I can't understand how this could be since the NG tube should be suctioning everything out. The nurse is trying to get some meds that should help with the nausea, but apparently there is little she can do for pain (since they didn't schedule the pain medication but made it by request, it has to be ordered and I don't know if anyone is around tonight to authorize this).
Please continue praying, as this is such a great trial for such a little girl. It is so difficult hearing Autumn moan and cry, but there is nothing I can do--this is so hard. At this point, it seems that Cassandra and Autumn are in for another long night.
Pray that Autumn will sleep some so they both can get some sleep. Thank you all for praying; our great God is so good to us and promises to answer according to His will.
Pray that He will be glorified and that we all will grow closer to Him through this all. Others have asked what they can do besides pray.
I know a quick phone call to the hospital would be so appreciated; Cassandra would love to hear from some of you.
Sunday June 11, 2006
Well, we had a busy night. Autumn had very bad gas pains and stomach cramps. Praise the Lord her fever went down to 99.8 and now it is 98.8. She vomited about 4 times throughout the night and early morning. Because she knows it is good to walk and might make her tummy feel better and she was so desperate she made me walk three times.
We are going for an x-ray this morning. If she vomits again, they will put an NG tube down to empty all that air and bile. The worst thing in the world happened to her. This morning at 6:00am, I didn't have the bucket ready in time so she vomited all over her special blanket. (It really looks like a rag) That was the end. Life couldn't get any worse than not having that special blanket. We both shed some tear together. Hers because of her blanket; mine because I am tired.
Have a blessed Lords day as we celebrate His giving new life to us.
Monday June 12, 2006
Autumn was up all night moaning and groaning. By morning, she was crying out in pain. I held her hand, prayed with her, sang to her, and at one point I climbed in bed with her holding her in my arms. She really wants to go home and get out of here.
By noon, nothing had been done for all her pain in her belly. It had been 48 hours since she and I had slept. I asked for the nurse to page our surgeon. He came in later and things finally started happening. He ordered an ultra-sound and x-ray of her stomach and bowel.
He is looking for a possible obstruction of the bowel. This would cause all the backup and pain she was having. When I know more about it, I will write. The surgeon also gave her morphine to ease the pain. Autumn is now sleeping for the first time in two days.
Thank you for your prayers.
Third Surgery: Emergency
Autumn does have a bowel obstruction. She is going into surgery right now (5:30 p.m.). Will update as we learn more. Thanks for praying.
Surgery went very well. Dr. King said her bowel was obstructed by adhesions causing her to back up. He also made the comment that it was "dusky".
With a quiet seriousness he told us that just a few more hours and her small intestine would have perforated because of the obstruction. The Lord certainly was in control. We had the surgery just in time.
She is high on dilantin (spell?) I was talking to the nurse in the PACU after surgery. Autumn had her eyes closed and looked sound asleep. I was telling the nurse the ages of my children.
I said, "10, 9, 8, 6, 4, 3, and 16mo".
All the sudden she said 11!
Then she grinned and said "Joshua is 11".
The nurse and I laughed so hard because she was thinking so clearly. She has not stopped talking yet. :) We think she is high on her drugs (pain med).
She has an NG tube, a Foley, oxygen, pulse ox, and pain meds. . Thank you for praying. I am going to attempt to sleep.
June 13, 2006
Autumn had an uneventful night. She still is hooked up to everything. She has stopped talking because it hurts her throat. The nurses had to put a new NG tube down about 2 hours after surgery, because the first one was not thick enough and kept collapsing.
I think her spirits are down. She does not want to walk at all. I also think she is just plain tired from the long weekend. Right now she is in the playroom for music time play group. She is playing on the drum with some other children. This is helping.
She has developed a little fever (100.8). This could be because she is not up as much and she is not breathing through her little tube.
On a more personal side, I am tired of doing this over and over. It seems like an eternity that we have been in and out of this hospital. I know it is bad when the cleaning people and the cafeteria people call me by name. :)
My comfort is in the sovereignty of God, His eternal love for Autumn and all our family, and that nothing can happen without the Lord knowing.
What a comfort to know,
All things work together for good to them that love the Lord...
Autumn has been running a low grade temperature this morning and this afternoon. They did take the Foley out. She had no trouble going potty which she is very thankful. The NG tube is still in. She is still nothing by mouth. Her spirits are good right now. I will tell more later.
As a young teenager, I memorised Ps 139. What a marvellous yet terrifying thought that the Lord, the God of the universe knows all about me. There is no where I can go and nothing I can do without the Almighty God's knowledge.
As I contemplated this thought, it brought me such comfort. As many people know, the night time is difficult to get through when in a trial. The fear of the flesh literally grips my heart and takes control if I allow it to.
The simple, yet as the same time, difficult thing to do is trust. Lean on the everlasting arms of the only One who can truly take the fear away is the only way for peace. We almost lost Autumn last Monday. If she had not had surgery that evening, her small bowel would have perforated. Praise the Lord for His mercies.
June, 14, 2006
Today she is mending. It may take awhile. Her NG will stay in until all small bowel wakes up. As of this time, it has not awakened. Autumn confided in me this evening that she is scared it will take three weeks for her bowels to wake up. She has not eaten or drank in a week (except for the one meal on Saturday).
She is a little girl who is very hungry and who is trying her best to get better and not be discouraged. Everything I ask her to do, she tries so hard to do so she can, "Get out of here" as she puts it.
June 16, 2006
I apologise for not writing sooner. The Playroom was locked so I could not get to the computer. Autumn has an NG tube down her nose into her stomach. This suctions all the bile that is sitting in her stomach that is not moving through her intestine.
The problem is she is having about 800-1000ml of fluid sucked out of her tube. The amount is supposed to decrease if her small bowel wakes up. This number has not decreased but has instead increased.
The question is "Why"?
The other question is, "Where is the fever coming from"?
There are two reasons the surgeon gave us. One, the small bowel is very very slow; two, she could have what is called SMA syndrome.
She had an Upper GI to confirm if the latter was the case. We are still waiting for the results. In the mean time, the Doctor told us to cap the NG to see if she could pass any of the bile through the small intestine. After being capped for two hours she started to vomit. We are waiting for a doctor to see what he wants us to do.
One of my biggest fears is the weekend. This is when our surgeon is not in and the residents and fellows take over. After my experience last weekend I am a little afraid. Please pray for wisdom to know what to do.
June 17th 2006
When I walked into the hospital this morning, the nurses were just finishing putting a new IV in. Apparently, the one from Monday was not working any longer. This, as many of you know, is no fun--especially when you haven't eaten in over a week and your veins are small. Autumn is doing about the same.
She doesn't have any real pain, but the NG tube is still suctioning out a lot of liquid and her bowels are not completely awake yet. Please pray that thing move along soon. Since it's the weekend, I don't know what kind of decisions will be made, but I hope we don't end up waiting until Monday.
On another note, the children here all have their own story, some of them too little to tell it. Unfortunately, some do not have any parents with them and others basically live here with no home to go home to. It is as though they are stuck in a nightmare of hospital smells--a mixture of antiseptic smells and sickly air--and caring nurses that are not quite like mom.
I can't help but think that our Saviour, Jesus Christ, grieves for these little ones. The Scripture records Him allowing the children to come to Him and scolding those who at first would not allow it. He also spent much of His life healing the sick and dying.
What love must He have for the many many children here! The need, of course, is not for us to wish for Christ's earthly ministry of healing, but His present one of healing the soul. More than just peace in the various heartbreaking situations I see around here, Jesus offers true eternal life: a real relationship with Him; a genuine Heavenly Father that loves and cares and sustains the soul...forever!
Autumn's NG output has decreased from 1500ml in 12 hours to 350 ml in 8 hours. She is now on the NJ feeding. This is the one in her nose past the SMA artery straight into the small bowel. So far she is tolerating it well.
She is also getting PPN (partial Parental nutrition). This is going right into her normal IV sight. Tomorrow she will be getting a PIC line. At that point, she will get TPN (total Parental Nutrition) this will help her gain weight and put some fat back into her system.
She is in the playroom making a Father's Day gift for her Daddy.
We hope to be out of here by the end of the week. When she goes home, she will continue with the TPN at night to give her the added nutrition. We are still praying for the NG output to decrease and her SMA Artery to move from occluding the small bowel.
Autumn is feeling a lot better. She is in no pain. The Doctor took the NG drainage tube out of her nose! :) She is very happy about that!! She is being fed using the NJ tube. She is still not allowed to eat or drink anything. Our goal is to see if she can drink with out getting bloated or having pain. We may start that tomorrow. Her levels for the Pancreas went from 600-1100. She has an unexplained pancreatitis. Her spirits are good. She is just very hungry. I am just very tired!!
June, 18th 2006
Autumn was able to eat three meals today without any difficulties, so the doctor didn't see any reason for keeping her another night. When the children and I came home from church, Cassandra and Autumn were home!
We're so thankful to all be under the same roof again. Please pray that Autumn continues to heal and that she will gain weight. She still has some pancreatitis also. Thanks for praying.
June 19, 2006
So far so good. Autumn is doing very well. She is doing even better than I had hoped. She slept all night; she didn't even have to get up to use the bathroom.
She is still wearing a pull-up at night in case she has an accident. During the day, she is only going about 5 times. This is way down from what I was told would happen.
She is tired and a little skinny. We are feeding her a low-fat diet so her stomach can digest the food better. The last I was told, her enzyme level for her pancreas is still elevated.
I tell her that her plumbing is working; she just smiles. We are both glad to be home. I am exhausted, but life goes on. I literally dug my way into the house this morning. The upstairs now looks good. Now, I am working on the basement and the laundry.
I have to get this done today because I need to pack tomorrow. My husband is taking our teenagers to Camp Joy for teen camp and Joshua is going to junior camp at the Wilds with my brother Ben and his wife Dayna. This means I will be alone (well, with my other children) next week.
I was planning on going with my husband, but then Autumn had to many complications. Thank you so much for all your prayer. I am confident Autumn is with us and healthy because the fervent prayers of Christians around the world.
Hi, everybody I'm home finally. How are you? I'm great. Before we left the hospital, I really wanted to see my favourite night nurse, Jenny. Well it all worked out that I got to see her. I was glad! Well that's all. bye.
July 4th, 2006
Autumn is back in the hospital for a partial obstruction and a thickening of the walls of her stomach. She was in a lot of pain from 12:30am until we got to the ER at 7:30 this morning. It took 8mg of morphine for her pain to subside.
Please pray for encouragement and for wisdom from the doctors. Why is this happening? The Doctors are perplexed. They are truly doing all they can to find out what the cause of the problem. Autumn is very tired.
I am exhausted. We are trying to uplift our souls in the only source of comfort... Christ. It is hard to trust yet in these circumstances the only way to look is up at the face of our Saviour. Michael has all six of the other children. He is doing a good job. He is probably a bit overwhelmed. :) He even went to Walmart with five of them. :) Thank you for praying.
Please pray for Autumn. She does have a partial bowel obstruction. This seems to be what is causing the pain of her upper left abdomen. Please pray that it will dislodge on its own. God is powerful to move mountains; we know he can move this obstruction.
She is also having an Endoscopy tomorrow. This looks into the lining of the esophagus and the stomach, and the duodenum. This hopefully will give us an look see at why her stomach wall are thickened. The Lord is gracious.
Please pray for mercy and peace especially as we go into the night time hour. This is the hardest time for me personally.
July, 5, 2006
Autumn had not had a bowel movement in over 20 hours because of the partial obstruction. I called a few people last evening. I truly believe God answered our prayer an hour after my phone calls. She had a bowel movement last night at 10:00. This putrid stuff came out.
We believe this must have been some of the problem. She slept all night without having any pain. That is truly the Lord. This morning she had another x-ray to see if her abdomen looks as good as she feels. We still are trying to discover why she is having so many obstructions. We are also going to consult with the GI Doctors as to the Endoscope.
The Lord is the great Physician. What a wonderful promise that He will never leave us nor forsake us. I have sensed the Lord's presence so close. Thank you for your prayers.
Autumn is now home. She came home Friday. She is doing very well; running, playing, being the sister that everyone missed. We praise the Lord that He allowed her to recover without surgery.
My husband for the last 6 months has been having some health issues with his legs. There are times he cannot walk and is in very great pain. I do not know why the Lord is allowing us to be put through the fire, but our prayer is that we will come out of this to His praise and glory. The Lord has taught me many things and I am continuing to learn.
Trusting is the Lord is a moment-by-moment decision. There were times that I thought I could not go on any more. Many times my husband could not help me in the evenings.
Overwhelmed and exhausted, I would cry and feel sorry for myself; than I would again be reminded, I am not in this by myself. I need to cry out to the Lord for help. It was at these times the Lord would show me that yes, I could not go o,n but He could.
Placing myself in his total care and resting in that is all that kept the fear from overwhelming me. A friend reminded me of this scripture.
Psa 61:1 Hear my cry, O God; attend unto my prayer. From the end of the earth will I cry unto thee, when my heart is overwhelmed: lead me to the rock that is higher than I. For thou hast been a shelter for me, and a strong tower from the enemy. I will abide in thy tabernacle for ever: I will trust in the covert of thy wings. Selah.
What a wonderful Lord and Saviour we have.
Well, summer is almost over. This last 6 months has gone by very fast yet very slow if that makes any since at all. This week I have been getting ready for school. I am home schooling this year. We have turned half our basement into a schoolroom.
I am coming to this with a little fear and trepidation. My husband has gotten all the equipment set up. We are using the BJ Home SAT program. After much prayer it looked to be the best option for our family. Joshua is 6th grade, Autumn is 4th grade, Melody is 3rd grade, Carissa is 3rd and 2nd grade, and Timothy will be in kindergarten. Stephen is 3, but he is going to watch the K4 program. This will give him something to do.Of course, Serenity, 18 months, is the supervisor (or so she may think :)
We are going to start school on August 28th. We named our little one room schoolhouse, Walking Worthy Christian Academy.
The Lord has been so good to us. Autumn is doing very well. Sometimes, she gets up more than once at night, sometimes her bottom is sore, but all in all she is doing what is expected. She does get tired easily. Just yesterday I told her to rest, she ended up taking a 3-hour nap.
We miss all our family. It seems forever since I have seen Sarah; Ben and Dayna; and Paul and Jill; and Scott and Michelle. Jill and Dayna have both had babies whom I have yet to see in person. We have all the new babies plastered on our refrigerator.
Every new person who comes to our house has to see the babies. Of course we don't have any little babies here anymore so we like the pictures of all the little new cousins.
August 23. 2006
Last night, Autumn began complaining of her stomach hurting. We approached it by assuming that she merely had a stomach ache and encouraged her to try to get some sleep. However, with all that she has been through, she was quite scared and worrying, which probably made matters worse.
We prayed with her and tried to help her remember Scripture. But after we were in bed, Autumn's pain began to intensify and then she threw up. From then on, her pain was increasing and Cassandra decided to call the hospital.
Several times, we thought maybe that she would fall asleep and be okay--at least until morning. But with her groaning getting louder, we decided to get her to Children's. They are still doing tests, but she definately has some kind of obstruction. I don't know more than that. Thank you all for praying.
We arrived at children's ER around 2:30 am. She was in ALOT of pain as well as vomiting. The Lord answered our prayer by getter her in very fast. In a matter of 30 min she had and IV, morphine, and ex-ray.
The results of the ex-ray showed a complete obstruction. I was able to look at the ex-ray, it looked as if someone had pumped her intention full of air. They immediately put an NG down into her stomach to decompress some of that air. The standard course of action is to let the bowel rest, decompress, and give meds for pain in hopes the obstruction will clear on it own.
The doctors think this is cause from adhesions for her scar tissue adhering to her small bowel and causing sections of it to squeeze shut. Thank you for praying.
Sometime between last evening and this morning, she had her first bowel movement. We got an ex-ray this morning, and it looks a lot better. The Lord is choosing to move things without the doctor's help. She now has a partial obstruction rather than a complete.
The NG is still is in, but it is capped meaning it is not on suction. The Doctors want to see if she will get nauseated without it. If she does well, they will remove it and give her clear liquid.
Please continue to pray. Autumn is in good spirits. As soon as her pain was managed her spirits were better. She has alot of fears of pain because of her knowledge of previous pain. She is definatly a trouper!!
Later: August 24, 2006
Her parents died when she was young, her adopted parents died when she was a teenager, she ended up in her young adult life with a debilitating, painful, juvenile rheumatoid arthritis, yet Annie Flints was able to pen these words.
He Giveth More Grace He giveth more grace when the burdens grow greater,
He sendeth more strength when the labors increase;
To added affliction He addeth His mercy;
To multiplied trials, His multiplied peace.
When we have exhausted our store of endurance, When our strength has failed ere the day is half done, When we reach the end of our hoarded resources, Our Father's full giving is only begun.
Fear not that thy need shall exceed His provision,
Our God ever yearns His resources to share;
Lean hard on the arm everlasting, availing;
The Father both thee and thy load will upbear.
His love has no limit; His grace has no measure.
His pow'r has no boundary known unto men;
For out of His infinite riches in Jesus,
He giveth, and giveth, and giveth again! Annie Johnson Flint
2Corinthians 12:9 And he said unto me, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me. The Lord is loving and good, for this I am thankful; His Grace IS sufficient...
Praise the Lord!
August 27, 2006
We are home. The Lord was gracious and the obstruction cleared on its own. We are exhausted from the last three day as well as from church today. School still starts tomorrow at our home. Thankyou for your prayers.
As many of you heard, Autumn fractured her heel about a week ago. The doctors believe she fractured it so easily because of her large use of steroids that was taken to help control her disease these last 4 years. We are going to see her Doctor next week to get a bone density test.
How did she fracture her heel? Spider climbing on the walls. Sounds terrible doesn't? Can you believe I let her do that?
Good because I did not! She did it without me knowing she was climbing until she was all the way to the ceiling. She will never be doing that again! :)
Monday afternoon on the way to violin and cello lessons in Columbus, Autumn started having tummy pains. After watching her hold her stomach and tears streaming down her face, I called her doctor on my cell phone.
He told us to go straight the Children's ER. This meant we missed all our piano, violin, and cello lessons. I called them to cancel and finally made it to the ER. By the time we arrived (1hour later) her tummy was still hurting, but not enough for tears.
We waited 4 hours in the lobby and then another 3 hours in the ER room. Because she was not an "Emergency" - crying. Vomiting.... ect- she had to wait.
By the time she got her x-ray to see if this was another bowel obstruction (Praise the Lord) her pain had left her. The x-ray came back as normal. They think she had an obstruction that worked its way out in the amount of time that we waited.
We are so thankful she did not have to stay or need an NG tube to fix her. The Lord is the great physician. On Tuesday, Autumn had her bone density scan. We will not know the results for a couple days.
Autumn is now a normal teenage girl who loves her family and her Saviour. Life is normal or is it? What is normal?
Life is hard, but with Christ on our side, we can have victory!
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