Broc continues to have pseudo obstructions where he cannot tolerate his formula or pedialyte so we have to hook up IV fluids so that he doesn't dehydrate. While he is on IV fluids we drain his g port continuously so its very difficult to leave the house let alone the couch with him. Draining his belly helps keep the pressure off of his abdomen and also drains all the bile that he would be otherwise throwing up. I know its not a pretty picture but that's our reality now. We never get a warning when its going to happen and these episodes come on very quickly.
Originally we thought they were brought on by a virus but we are slowly learning that his low WBC counts may not be viral illness related. That will be in the next post Hemonc Update.
We are trying to switch Brocs formula to one that does not have corn syrup in it, incase that may be causing some of the issues. In any case we would like to give him a formula that takes very little work to digest. We are also trying to get him Boost Clear which is similar to pedialyte but has more calories in it. On the days that Broc cannot tolerate formula but can tolerate pedialyte then we will give him boost instead so that he can at least get the calories that he so desperately needs.
We have tried to introduce foods into his diet. He only eats for pleasure (meaning the food that he consumes is no where near enough calories for him to survive on). Some days he tolerates the food well and other days it causes him a lot of discomfort so we have to drain it as soon as it causes a problem. Also his food takes an extremely long time to leave his stomach and small bowel so if he eats too much food it will just accumulate there and cause a lot of pain and bloating which can be very uncomfortable for him. Introducing foods is a very fine line that we are learning.
Broc is not text book by any means. He is totally writing his own book and all his specialists and doctors are learning this.
He is also having lots of issues with bacterial overgrowth. We have treated it before and it was successful but it seems to have reared its ugly head again. We are treating it again more aggressively this time. It causes an immense amount of gas buildup for him which is so uncomfortable sometimes that he cannot even move. Once again it is caused by his extremely slow gut.
His GI Drs believe that there could be some nerve/muscle damage to his colon which is adding to the problem. That would be caused by his Mito Dysfunction. We are going to see a Metabolic Geneticist to see if he has any ideas to help with this further and we are hoping that he will be doing the Whole Exome Sequencing Testing.
We have an app with his GI surgeon in Aug to see if we need to investigate further into his colon. If there is a section of his colon that is not functioning then it makes sense to take it out as it may help him. We have a lot more researching to do before we jump on this wagon.
For now we are patiently waiting for the insurance to approve the new formula for Broc. We are also slowly trying to increase his feed rate by 1ml every week. His goal rate is 75mls per hour and he is currently at 57mls per hour. It may not sound like a lot but to a gut that is not very happy with anything in it, its a huge amount.
We are still running Brocs fundraiser to buy T-shirts. There are only a couple days left. Here is the link if you would like to buy one. www.booster.com/brocsbuddies?
If you would like to make a donation please contact me for paypal details.
Thank you to everyone that has supported us this far.
Here are some pics from our Regional Convention that we attended. We were able to make 2 days as Broc got really sick on the Friday evening. He was still sick Sunday but he rested most of the day.
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