Sarah is home! She was so glad to see Ashley her caregiver!
Sarah had an emotional break down today. She had had it. Unfortunately she had stomach issues today. She also started refusing food because she was so tired of medicine. We were not sure she was going to come home and we did not feel comfortable bringing her home but she was done and it seems the hospital has come to the end of trying to find out what is going on.
It's frustrating but it's good to be home!
This is her fast asleep on her baby monitor.
So to recap everything..... around August/September we began to realize Sarah was bloating after she ate, usually just her supper meal. At first we thought she was just eating too much. It was kind of funny. But after a few days we started to worry. I called for a gastrologist appointment, and it took about 5-6 weeks to get in. During that time, we also noticed Sarah seemed lethargic at times. The bloating continued. When we saw the doctor, he suggested using diet elimination. So, one week I cut out dairy, another gluten and another maltose. I couldn't tell any difference at all. I was waiting to get her bloodwork done I had called and asked for some regular CBC blood work to be added and I actually talked to the office on the morning of the day Sarah got sick in December.
On December 15 I fed Sarah supper, she was happy and responsive. Then I walked her to her room to change her diaper and she collapsed on her rug and started gagging and retching. Her lips went white, and she got huge dark shadows under her eyes. I noticed her belly swelling as I watched her! I started praying out loud I was terrified her stomach was going to crack open. No exaggeration! Never have I seen something like that! The swelling was from her neck down to her belly. I called Jon to come home, and he got home and took her to the local ER. They did an Xray then a CAT scan. They seemed to show enlarged intestines & some poop. They transferred her to St Joe's in Tampa. Jon had to come by and pick up some stuff. It was the first time she has been away from one of us or her caregiver. She did fine. The hospitals seemed to concertante on the fact there was stool in her although she had been going to the bathroom regularly. So, they did a big cleanse and sent her home 4 days later. For the record I kept saying something was wrong. No one listened.
When you have a child with special needs people assume a lot of things. Over and over people assumed she had cerebral palsy and was wheelchair bound and used that to say lack of mobility was hard on the stomach.... so many times, over both hospitalizations I had to correct that! It was very annoying.
So, no matter what we said they blamed the swelling on constipation. So, we were sent home. From that point on Sarah could not use the bathroom. I would call in regularly and explain to nurses, on call nurse practitioner, etc... I did everything they told me including enemas. That was the only way she could go. In spite of all my messages no doctor called me back.
Then on New Year's Eve she began really swelling. I called in the NP on duty told me to give her an enema and follow it up the next day with a total clean out of Magnesium citrate. Bless her heart she swallowed a whole bottle but did not go to the bathroom only stayed swollen. We kept calling in and was told not to worry since she had pooped a little. Finally, I told the woman we were taking her to the ER. After a 2 hour wait, they saw her and basically admitted her. Funny thing this time she did not have much poop inside her so they couldn't blame that again.
They did some testing an endoscopy and colonoscopy and did alot of biopsies. We were basically told by the doctor that there was nothing wrong and she could go home on day 4 or 5. That day she swelled up like crazy after eating an early sopper. At that point we were not going anywhere and told them. The next day the doctor came in and basically said that Sarah was ok no, and we could go home (her tummy had gone down. Luckily, they did get an Xray when the swelling was going on. It showed her tummy was distended with air. Then the smart doctor decided Sarah was swallowing air because of some of the movements she does with her mouth (she was actually blowing OUT because she was annoyed, we had turned her music off) Then the doctor went on and on and on about it includes the fact that Sarah had pooped the night before and the swelling went down. She was trying to tie in the "swallowing air" with some relief after going to the bathroom I lost my cool! I told her that we all swallow saliva (which is what Sarah was doing) and that Sarah did too. Also, most people go to the bathroom daily but do not swell up before hand and be in agony. I kept pushing for more studies and answers. By this time, I truly felt some of the doctors (we were dealing with several) thought I was a nut case at best, but I'll be honest I let it roll off my back as I was looking up everything anyone told me to check out. I'd keep a list after speaking to my special needs mom friends. In my heart I felt the small intestine was to blame somehow and said it a few times.
The next day Sarah actually had to be seen by a speech pathologist who said she saw no evidence of Sarah swallowing air while she ate/drank/or sat around. At that point I asked for a second opinion because I could not trust that doctor. I told her that I appreciated the fact they were turning over many rocks to try and find out what was going on but just because they had not turned over the right rock, yet they did not need to put the blame on Sarah and not listen to us.
Sarah then had a upper and lower GI barium swallow. She drank this stuff, and they took x-rays as it went through her system. At one point while I was watching the screen, I saw something very odd looking. Her guts were all on the right side of her body and we couldn't see them anywhere else. I felt like that was significant. I thought maybe some of her small intestines had died and that's why we couldn't see them.
We had been told after the CT with contrast that all her organs looked normal. We had two radiologists to review then (I asked for a 2nd review) So we weren't really concerned that they'd find something. Our thoughts were more along the lines of a strange virus.
As I was driving away from the hospital (one of us came home every night usually me to take care of everyone else) a doctor called to tell me they had an answer, and it was treatable.... THEN she told me that Sarah had malrotation of the intestines.... she explained it to me, and I was rather in shock! Sarah's small intestines were not strung across her body normally but bunched up in the right side of her body! OMG! Needless to say, I got completely lost going home as I was talking to her. I was elated to know there was an explanation but sick that she would have to have surgery. BUT how in the HELL was this missed for 15 years???? When we brought her home one of our first specialists, we went to was gastrologist for the various worms Sarah had. Xray's were taken. Then in December a CT with contrast was done......how was the location of her small intestines missed???? One of the first symptoms is air in the stomach....
Then we scheduled surgery with the same doctor who did such a great job on Sam's tumor. She had a successful surgery and removal of her appendix (which was on the opposite side of her body than where it is usually) She literally was up the next day as if she had not had surgery. Then one of the biopsies came back that she was lactose intolerant. Another answer! The kind of LI she has can start over time she was not necessarily born with it. In the hospital they had already been treating her as if she was LI but after getting the results, I really watched things like a hawk, and they were sending her stuff that did have some lactose in it.
Fast forward to yesterday they were ready to send her home and we were so ready to come home...but she had another swelling after eating. Just so you know she is on gas meds before every meal and an anti-acid. Again, she found some relief after a bit by going to the bathroom but that is not normal behavior & the surgery cannot be blamed because she was doing that before over the past month.
Today she had bottomed out. She literally was shaking from stress and not wanting to eat or take much by mouth. We were concerned because now she's done the same thing despite the surgery and being off milk products. After some tense talks, we decided to go home and plan on taking her to another hospital should she continue to have problems....
We also have another big issue.... last year without my permission (LOL) the most wonderful pediatrician retired We had been with his practice since Steve was a baby. We loved him and had grown close to him over the years. I had his home, cell and back-office phone number He walked with us through some terrible times when Sam was young. He was the one we went to only 12 hours after landing in Florida from Ukraine. He gave the girls his full morning to check them out. He worked with us so Sarah would not have to be hospitalized after coming home in such bad shape. He walked with us through Selah's accident and called us and check on us. He helped our family so much!
So needless to say, there is no replacing such a doctor. But I tried...after meeting with one doctor we tried another one. We knew it wouldn't be the same, but we had to connect somehow. So, we found a good doctor. She has a good heart. I brought each of the three children in one week after another. Finally at the appointment of the last child we had a heart-to-heart talk and she asked me some questions about my beliefs. She was so positive and shared with me some personal situations.
Well, I was elated! Until I got a call from her office manager asking me to find another doctor for my kids because they were too involved! I kid you not! Evidently our nursing agency had had a fight (I had no knowledge of this) with the doctor's office because some forms were not in. So, the STAFF did not want to work with our family! Somehow the other doctors in the practice were informed and agreed they did not want to be responsible for our kids should our doctor be out! I kid you not! I was actually cleaning the church and I sat in my car and wept. The weight of my responsibilities weighed so heavy on me without having a dependable pediatrician. Without knowing all of this I had already been considering a complex care peds office based out of Arnold Palmer in Orlando because they will work with their SN patients far into their adulthood. I did have appointments for the kids, but the appointments were months away. That sweet doctor called me and gave me her cell number and told me to call her if her office couldn't handle things and she would see it got done. I thought that was so sweet it made me cry. But in spite of that, I do not feel comfortable with how things are. We had to miss Sam's appointment and it got rescheduled for next week which was originally Sarah's space. She has been rescheduled for March but I'm hoping they will figure out a time sooner than that! That office is not taking any new patients after us for a while!
So, we have some serious stressful things going on. We also have things we are working on for Selah and a very close friend is fighting aggressive cancer. Both of our older boys have major changes happening in their jobs and life-it's all good things but it's still stressful. The biggest stress for me is that in his new job our oldest has to do a lot of traveling...on a small plane! if you know me you know I hate small planes after an incident that happened to us years ago. And our church is struggling with attendance since Covid although the members are so very faithful in their giving as we support many missionaries. But it's discouraging.
As far as Sarah goes, we are on a wait and see basis. We are feeding her small amounts but more often and I was able to get her to take some formula today Katyfarm which should meet her nutrimental needs while she is eating less. One doctor said for her to be on a liquid diet, then advance as we see fit. Another says to feed her regular puree sans any milk products
I did go and buy her all the stuff for a lactose free diet. Normally I keep her a freezer full (yes she has her own freezer) of her meals but I gave it all to the animals since some were milk based. I just wanted to start over and make no mistake in what we feed her. I've already figured out how to modify most of our meals so she can eat them. I said I feel like I have a newborn again LOL
If she swells up, we are taking her to Arnold Palmer. There is something else going on with her-everyone knows it but some won't admit it. They just assume she had problems before the fall. She did not! Of course, when she first came home, she had several bugs and had mostly diarrhea for a few weeks but once that got cleared up, she never had a tummy issue. No she doesn't chew normally but that is more to do with how she was fed in the orphanage. We had already taken her for 2 swallow studies She does not understand how to chew although we have been able to increase the texture of her food to a very coarse puree and she learned to drink with a straw (no that's not the cause of her air) She went to the bathroom regularly until she was in the hospital in December. Sarah has only had a couple of ear infections and covid in 2020 (she had the monoclonal antibody treatment and recovered during the treatment-first child in Florida to get it. Lakeland Ledger wrote up a piece about her) She has always been so healthy once we dealt with the various issues, she had because of the neglect of the orphanage staff. I just do not think the doctors believed that no matter how much I told them and that irritated the hell out of me They saw her as a very special needs handicapped child who had so many issues. We kept telling them how she walks, rides a horse, swings, plays with toys etc.... So, they see gastric problems as just par for the course. It's beyond frustrating!!!
Maybe now she is home things will even out. I hope so but I don't feel confident about it. So, pray for Sarah that either God touches her little body, or we find the complete answer to this issue. Please include our family on your prayer list especially our oldest son as he will be flying next week on several trips! Also, Shad starts the law enforcement academy -no doubt he will do well and succeed but it is definitely a very adult step forward for him that may be the beginning of his life's work. There is also some things we are looking into for Selah so just alot going on...for once (knock on wood) things ae pretty good with Sam although as usual this time of year he has constipation issues. It is the absolute craziest thing ever but every "winter" he has problems. We are giving him Ducolax and MAKING him walk around the property every day 5x! It equals out to about 2000 steps he walks very grudgingly and angry. It's hard not to laugh. It's the only time he walks fast. It's been challenging to keep him on this exercise plan, but we've made it almost every day. Sam would be happy to be a complete invalid. He wants to sit all day, so it is a chore to keep him moving. He's always in a good mood when he comes back inside, and he hits "his chair" btw that chair was supposed to be mine.....it's not:)
Life is busy busier than ever right now and so many changes -I do not like change even good chamge I long for the days when every day was much like the other one. There was a time before the girls' adoption from about 2007-20011 that my life was predictable except for some occasional medical drama from Sam. but even Sam was calmer during that time frame- the worst was behind us. Steve and Shad went to a little private school, so Jon took them to school, I had the whole day home with Sam till it was time to pick the boys up. Then we'd come home I'd get supper ready, and we'd watch tv. We didn't have cable or good internet, so we bought sets of old t v shows like Andy Griffin or Gilligan's Island. It was the "Golden Years" for me Of course the very happiest days of my life were when we got the girls home before the accident. The Summer of 2012 was the happiest I have ever been in my entire life. Sometimes I get upset and angry about the things that have happen but at least I can say to myself "I have had true happiness and contentment. There're nights I can remember when the kids were all in bed in our little house and maybe it would be raining but I just felt complete contentment. It was good-I'm lucky to have had that time. I love this time of my life (Not the medical drama) but it's certainly different. It's more exciting but heck who needs excitement. LOL
Anyhow I wrote all this info out to help me remember but also to share with y'all. If you have any ideas of what Sarah could be dealing with, please email me at theclanton5@aol.com or leave a comment. There has to be an answer! Thank you all!
