It has been an extremely busy two weeks. Last week, actually starting on October 28, the day of Allison’s first Botox injections, she started a vomiting cycle. We treated it at home, although she did get to the bloody vomits stage near the end. She has not had a cycle like that since she was hospitalized back in August. I knew if I took her to the hospital, we’d be there for days, but they wouldn’t do anything there that I couldn’t do for her at home. It just made everyday tasks more difficult.
On November 1, we met Dr. Geiger, the lead surgeon at Mott’s Children’s Hospital in Ann Arbor. He listened to our long complicated history, but really didn’t know what action to take. He looked through her old records, including her last upper GI back in May. The only idea he had was to wait to hear what her big overall diagnosis is, and then decide whether or not the Nissen needs to be tightened. His comments made sense: why tighten the Nissen to keep her from vomiting if we haven’t figured out why she is vomiting. Obviously her body is triggering her to vomit, why make it even harder for her? But he did see that her Nissen is “tipped” and that she has a portion of herniated stomach above the wrap. This could be a concern. He also discussed some other surgery options for farther in the future, which would basically by-pass the stomach altogether – so when she has mastered oral feeds, this would be a fantastic option. In the meantime he ordered another upper GI, her seventh I think.
This past week we spent a lot of time in the car. Allison had her best therapy session ever on Monday – her first session since the botox injections. She is so much stronger already. On Tuesday evening I came home to a message from the genetic/metabolic department at U of M, saying test results were back and I should call to get them. I knew this couldn’t be good news, since every other test result has been negative, so the doctor just gives them on the answering machine. So I slept poorly and worried about it all day until I could return that phone call. It turns out that half of the tests that Allison had done back in October came back normal, meaning the other half came back abnormal. It was recommended that this test be repeated. Luckily we were planning on returning to Ann Arbor for tests on Thursday, so it wasn’t go to be a problem to bring in more urine.
The abnormal test results were those connected to Congenital Disorders of Glycoslyation (CDG). This would be a terrible metabolic disorder that could be terminal – especially for those who have onset in infancy. A lot of the things I’ve read about this disorder sound very familiar, so this could be the one. It will take another month for these results to come back. Although the Mayo Clinic doctor did not mention this disorder specifically, it sounds very similar to Glutaric Acidemia Type I – both having that root word of “glute,” “glutan,” “glucose.” I don’t claim to know the ins and outs of these two disorders, but it seems that Allison has an issue turning sugar into energy. Carbs, protein, and sugar keep popping up in the things I am reading about these disorders.
So…on Thursday we were in Ann Arbor by 8:00. We made it to the genetic/metabolic department in time to pick up a “puck” to collect a urine sample. Easier said than done. Next stop was radiology for the upper GI. This was not fun for Alli or me. Again she was strapped down to the table, and barium was injected into her mouth via syringe. She choked, and gagged, and vomited on the table. And, as I suspected, no traces of reflux. I could have told them that. The only test that detected the reflux was the pH probe. The radiologist also said the Nissen looks ok, but I’ll wait on the surgeon’s opinion on that. After the upper GI we walked around trying to find a good waiting room to hang out in. She still had not produced a urine sample – but how could she? She was fasting for her radiology appointments. I graded some papers while she played in the stroller, buying time until her next appointment: a swallow study. The swallow study wasn’t as bad as I thought. She swallowed the thin barium and the thick. The speech pathologist gave us her blessings to start oral feeds (I bet the GI doc would disagree) since Allison has a strong swallow. So we left radiology and went back to the waiting room to wait for Allison to pee. At least I could start her feeds again – I thought speeding up the fluid would help her produce fairly quickly.
I took her to the bathroom to check every half hour. I figured we needed to leave Ann Arbor by 12:45 to get to our 2:15 in plenty of time. So at 12:30 we headed to the bathroom for what I thought was the last time. I was not expecting to see one of the nastiest poop jobs ever. It was through her clothes onto mine, and the pee bag was destroyed. If there was urine in the bag, it wasn’t going to be saved. There have been many poops in my motherhood career that resulted in the baby getting straight in the bath. Not only would I have liked to bathe Allison after this one, but I could have taken a shower after cleaning it up. So we were off to Battle Creek…
Allison had a speech therapy evaluation at the same facility as her current physical and occupational therapy. And although we had just received the good news that Allison has a strong swallow, it doesn’t mean she will voluntarily accept food in her mouth and swallow it. It is going to be a long road if she is ever going to get off the feeding tube. I hope we can get into a speech therapy routine that works with our schedule. After this eval, we went to Cereal City Peds to pick up more pee bags and make sure the lab we tried to do at U of M could be done at Regional in Battle Creek. Then we quickly headed back to Southwest for Allison’s physical therapy. She had another good session. There was another little girl in the room whom Allison kept watching – she was completely entertained and never cried once in the whole session. We considered it the best session ever! No crying and strong sitting with little support! What a day.
Friday: After a half day of work, Allison and I were off to Grand Rapids for a follow up with the rehab doctor who performed the botox injections. He was mostly pleased with her tone, but decided to increase the dosage in her biceps and quads for next time. Her next injections are scheduled for February 3. We made it back to Battle Creek before the pharmacy closed, but we only picked up one of the two scripts we needed. I had a little bit of time to kill, so I finally got the much needed oil change (yeah, over 7,000 miles in two months, but that includes our trip to Minnesota). Last stop for the week: Hungry Howie’s.
The next couple of weeks are fairly easy. Therapy as usual every Monday and Thursday. The next “appointment” she has is on Black Friday. We will be heading to GR for a seating evaluation. I’m not sure what to expect out of this, but I’ll keep an open mind. I’m not really ready for a wheel chair, mostly because I know it won’t fit in my current vehicle, but if the “base” can come off the wheel chair and be placed on the floor or on top of a table, then I guess we will go for it. Then we are back at Mott’s in Ann Arbor to meet our second opinion GI doctor. I’m really torn about this because I love her GI doc in KZoo. But it makes sense to have her ENT, surgeon, metabolic specialist and GI people all in the same building. I think Greg will be coming with me for this appointment, so maybe we can do some Christmas shopping and get some yummy lunch.
Although the CDG is a concern, I’m trying to focus on the positives – she is more verbal, she can swallow, she is getting stronger, she can look at us and smile. In all of our travels we have seen many kiddos who seem to be in a vegetative state. I’m so thankful that Allison engages with us and for the most part, seems to be a happy kid. Our goal for now: to sit unattended in front of the Christmas tree for a picture.
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