We couldn't get a hold of his GI so we only heard from his Tuesday morning. He decided to admit Broc as he still was not tolerating any feeds and still having pain. Once we got ourselves settled he had another belly x-ray to see if there was any change since Sunday. Thankfully there was less air and fluid in his belly. We were able to start boost around midnight that night and slowly increase his rate. By the next evening we were able to start formula back up also very slowly. Thankfully we avoided going to the ICU for a new medication and tpn. The new medication would have woken up his belly if he wasn't able to tolerate the boost and the tpn is IV nutrition.
Unfortunately Broc lost close to 2 pounds since last Saturday when we switched him to IV fluids. It may not seem like a lot of weight to loose but on someone that is already pretty skinny and needs all the calories they can get just to function its pretty crucial. We are going to set some protocols in place for when this happens again. If Broc cannot tolerate feeds after 2 days of IV fluids then he will go into the hospital to start tpn or we will have his nurse come to the house to start it.
We had a long talk with his GI and he has come to the realization that there is no reason that he can find why Broc cannot digest or tolerate any solid food. We have done all the biopsies and looked all through his belly and small bowel and nothing was found. We have consulted another GI who has also followed Broc and he feels the same way.
For now we are trying to go up on his feed rate very slowly as his belly does not like change at all. We are hoping to get him to a rate that he will start to gain weight at. It seems that he is only taking in enough calories to survive. We have tried to increase his rate in the past but it just leads to lots of pain,nausea and a very unhappy boy.
The last time we visited Dr Smith she said that it looked like Broc had a form of Mitochondrial Dysfunction from looking at his past history and how he is currently doing. Unfortunately it could explain the fact why last year he was able to eat food with lots of pain and nausea, but he was able to digest at least some and now he cannot digest any food at all.
We had Brocs eyes tested this week and unfortunately he will need glasses as his eye muscles have weakened again. His glasses will be made with prisms into the lenses to magnify everything for him. He doesn't have an issue with distance but his eye muscles do not work properly and he doesn't have any binocular vision either.
We are still in the process of trying to figure out the source of Brocs Neutropenia and Leukopenia. We will see Dr Nalepa next week to discuss our next steps.We will also have more info once the bone marrow biopsy is done.
We are also seeing his Neuro Surgeon next week as he is having lots of balance issues again and some other weird brain things going on. We are hoping that it has nothing to do with the surgery he had a year ago. Unfortunately Broc does have a big issue with scar tissue so we are hoping that this is not the case.
Brocs G port has started leaking on his GJ tube so that will be scheduled for next month sometime. While he is sedated for his GJ tube change he will be having his bone marrow biopsy and possibly a brain MRI too.
We are hoping to hear about Brocs wheel chair soon too. It does take quite a while to get the Drs to sign and fax paperwork.
I have started homeschooling Broc and its going really well. He has already completed some of his lessons for next week as we will be super busy with Dr apps. It really gives us the flexibility we need with him. It allows him to rest when he needs too as well.
Lil Mark had his first day of 4th Grade. He loves his teacher and came home and said " That was the best day of my life". A mom loves to hear those words. It gonna be a great year!! He has to deal with so much besides going to 4th Grade. He needs a teacher that is very understanding and flexible. So far his teacher seems just that. We have been very happy with all Marks teachers in the past. They have really understood our family and have been very helpful when we are dealing with medical issues with Broc. They really take Marks feelings into account and help him whenever they can. I'm hoping that with homeschooling Broc I will be able to give Mark all my attention when he gets home to help him with his homework.
I think that is all the news for now. I will update next week once we have seen his specialists. We really appreciate all the friends that help out with Lil Mark in the mornings and afternoons.
Thank you for all your love,prayers and support.
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