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April 20, 2013 / Tara

How Was Your Winter? Thank God It’s Spring!

My daughter the ham

Before the hospital on a fun day out bowling.

Yes I totally fell off the blogging bandwagon. Life has gotten a little chaotic lately. I started doing some contract work for a small business a little over a year ago and that has just really picked up. Which is a blessing since I find work keeps me sane but since I also have needed the money, that takes up alot of my time now. I recently begun writing some of their blog posts as well. I am not quite ready to share those with you yet though. ha!

The other thing that has got me very occupied is my youngest daughter’s health. In September she started to have more and more problems. She was constantly constipated (though going almost every day), distended in the belly and in pain and nothing was helping. Her GI felt strongly that she had a GI dysmotility and was trying very hard to get us in to the motility clinic at Children’s Hospital in Boston. There are very few doctors who do these tests and none at the hospital here near us. We got one “preliminary” test done in August but the motility doc we saw didn’t feel it was a true motility issue. She passed the test and he wanted her to see one of their GI’s who specialized in IBD with kids with primary immunodeficiencies.

Flash forward to October and she was still doing lousy. Waking up screaming in the middle of the night, so she ended up being admitted for a bowel clean out with the NG tube and all. Not fun by any stretch. This caused a lot of trauma for her as they didn’t offer us the choice of having her partially sedated or anything, just held her down and put the tube in. Twice, as it fell out.

Went home, not doing much better after 5 days. Not able to eat much, vomiting here and there, in pain all the time. So back in she went in November. Same thing, tried to clean her out, got her most of the way cleaned out and sent her home. I was watching her fade before my eyes as she lost a ton of weight and was getting so pale and had no energy. It was so scary. She stopped going to school as we couldn’t even keep her awake all day and she was in pain. I began home schooling her in the hopes that I could keep her in line with what the other kids were doing in first grade and she wouldn’t have to stay back. I will say that I love her Gastroenterologist, we have developed a great relationship, but the inpatient doctors at the hospital basically saw black and white and not that there was something else up with this kid. I now have enough experience with the hospitals to know that is the case in many of them. Her X-rays looked ok, she had had an MRI of her intestines which looked mostly normal, they just wanted us to wait for this motility testing that might or might not come.

Finally, we got the call to see the other GI at Children’s and had some hope that maybe someone would be able to do something to help her. He put her on more meds and said he really did feel she was not an IBD case but a motility case and said he would talk to the motility specialist about her and get him to set up testing. I didn’t particularly like this doctor because he kept pronouncing my daughter’s name wrong but hey-at least he was going to bat for my kiddo! A few weeks later they set us up with an appointment for inpatient testing to do a colonoscopy, endoscopy and motility testing. I was hopeful again.

Well the big day came and though she had to suffer through more bowel prep (yuck) and was not able to eat, she knew this was important. She too was sick of feeling miserable. Dad and I had planned it that since only one of us could sleep in the room with her, I’d go to the hotel next door and get some sleep, something I was sorely missing. They started her on a bowel clean out and though they gave her the option to drink the GoLytle and she has before, she couldn’t get enough in by mouth, so a NG tube was placed and they continued the clean out that way. At about 4:30 in the morning on 1/31/2013, I got the call. My daughter was in terrible distress, her saturation rates were dropping and they had done an x-ray only to see free air had escaped into the abdominal cavity. They would most likely be taking her in for surgery. At first, when I hung up with her father I had that moment where I thought “nahhh” that isn’t going to happen, we’ve been through this before where they say she needs surgery and then she doesn’t. I was tempted to lay back down and get some more sleep. But 10 minutes later the phone rang again and he was telling me they were going to be taking her down for emergency surgery as soon as they could. The fear being that her bowels had been perforated and stool could be leaking out inside. I don’t think I ever got dressed so fast. And if you like me, have some social anxiety, you know how walking in a city alone, never mind in the dark would normally freak you out. I could have cared less right then. I just wanted to get back to my baby.

The doctors were all in her room when I got there and I had that moment of fear but other than being in pain, she was okay. They explained to me what was happening and that she had to be taken down for surgery right away. I signed consent forms and we went down with her to the pre-op room. It wasn’t but 10 minutes before they were prepping her and giving her a sedative and we had to kiss her goodbye. She didn’t even fully understand what was happening. Luckily she was distracted by the pain and then sleepy enough not to be scared. Her dad and I were escorted to the family waiting room and he just about broke down. When you see a 6’2 guy almost in tears, it’s very scary. The nursing assistant gave him a big hug. She was such a doll. I wish I knew her name so I could have written her a thank you.

We sat in that room for over 6 hours. The doctors would come out periodically as the scope of the surgery changed. They had to cut her abdomen open from navel to almost rib cage as she is pretty small and take out the intestines to search for a tear. Luckily they didn’t find any but they did find that the walls of the intestines were stretched about as thin as they could go. Her intestine was completely dilated and the only option they saw to relieve the stress was to perform an ileostomy, where they separate the small intestine from the large intestine and bring the end of the small intestine out to the abdomen wall, and through so stooling will take place from that point. This would allow the colon to heal. Not knowing much, we of course gave our permission. Who is prepared for that? They told us it might be reversible but I have since learned that 60-70% are not.

They next came out to tell us because she was going to need to be on IV nutrition for a while and probably several meds, they would like to insert a PICC line so they wouldn’t need to keep placing IV’s. We of course gave our go ahead on that one.

They came out and told us she was fine…oh no wait, they didn’t. They actually forgot about us. Ha! We were getting anxious and he went to ask and they had already started wheeling her to the surgical ICU. Not their banner moment. She stayed doped up for a day and she was intubated for 2 days to give her oxygen support as her stats were not great. She stayed in the surgical ICU for about 4 days and then was transferred to the regular surgical floor.

This began a stay at Children’s Hospital of seven weeks, count them, yes seven. We went in for 3 days of inpatient testing and got to stay for seven weeks. In the time we were there she had numerous procedures, a blood transfusion, two more surgeries, a g-tube placed, the PICC line converted to a central line (Broviac) and countless tests and meds. They discovered with biopsies that she has severe inflammation in the muscle of the intestines which I guess is very rare. Yay, another “rare” thing. LOL

I have to say she handled most of it better than us. But with all the medical procedures and the incident in October this somewhat high strung child became a very hostile child, at least when anyone needed to touch her. So she is now in therapy for “medical trauma” and I hope it will help because she has become her own worst enemy. She has bounced back twice, once for 4 days once for 6 but the space in between the hospitalizations is growing. So I am hoping this time she is home for months.

My brave girl. Always smiling even after weeks in the hospital

My brave girl. Always smiling even after weeks in the hospital

She is TPN dependent which means most of her nutrition comes in liquid form via her central line though she is eating more now that they started her on prednisone to treat the inflammation. She gets extra fluids every day as well via the central line to prevent dehydration. We are hopeful she can be weaned off the TPN at some point. She had already stopped growing height wise a year ago, so this is just more fuel on that fire. But we are hoping that fixing the malnutrition that must have been happening with all this, will fix the growth problem. Her growth hormones are not. She has developed osteopenia so we have to be careful for fractures. And our biggest issue right now is just trying to find a way to let her be a normal kid when she is having issues constantly with her ostomy pouch and the stoma prolapsing still quite frequently. But this last week, we have seen some great improvements and it makes me think that maybe there is a light at the end of this tunnel.

While she was at the hospital I met families of kids who are not so lucky. There was one family who had a two year old son who had been in the hospital for about 20 months total out of 24. Another family who had a teenage daughter who needed a liver transplant after she came in for the flu. And then there was the Boston Marathon Bombings that happened during our last admission. Eight year old Martin Richard who was killed will never be going home with his family. His sister is probably going to be changed for life and so many other children (and adults) who were injured, will never be quite the same physically or emotionally. So I don’t want to have a pity party. When I start getting depressed on days like today where her dad brought her over to grandma’s house with her all excited because she’s been missing grammy. But then her ostomy pouch starts falling off and stool is leaking everywhere and dad doesn’t know what to do so he has to bring her home after only about 10 minutes, I remind myself that it could have been so much worse and I might have lost my little girl that night. Our lives are definitely changed, especially my little girl’s but she still has a life and things can get better. And it’s Spring!

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