For the last six weeks, I've sat down a dozen times to update the blog and can't find the words that can communicate what our family has going on. I have a few drafts saved, they are either completely technical filled with medical jargon, containing no emotion OR a few paragraphs of rambling from a broken heart. Today I am trying to find the grey between the black and white. The place where my broken heart and my obsessive knowledge gained from my pastime of reading medical journals meets.
I've changed over the past months, we've changed as a family. Where I once knew how to explain or give a quick response when asked "how is Jack" I no longer know what to say. Michael's canned response is "he's fine" I either mimic that response or say we are "plugging along". There is truth to both of these statements and it may just be the answer some are seeking when they ask. I feel others that want to know more or those who care about our boy are left with unanswered questions.
My last update left with Jack not eating, loosing weight and vomiting every day. We did some inpatient testing which showed that his stomach is not moving food to the small intestine. Normal digestion of an 8oz milk/pediasure is 1-2 hours at most. Jack is digesting it in about 8 hours or 1oz per hour. Solid foods are harder to break down than liquids and take longer. Bottom line, he's always full and always feeling that full bloated feeling... which causes reflux and vomiting. To add to the problem, he has pancreatic insufficiency where he doesn't produce digestive enzymes on his own. We feed him artificial enzymes before he eats or drinks and the life of the enzymes is one hour. With that being said, he's gaining nutrition from about 3oz of formula a day. The GI offered a surgery called a pyloroplasty where they cut the spincter between the stomach and the intestine so it now functions as a leaky valve. However, the potential for over cutting is great and he could end up with gastric dumping which would actually be worse for his digestion. He would also need a feeding tube but not a normal Gtube that feeds into his stomach. He would need a Jtube that feeds directly into the intestines This would give him nutrition but leave him unable to eat or drink anything by mouth at all. No water, no milk, no cupcakes at birthday's, no icecream, nothing.
Obviously this was not a good answer for us, but considering he is literally starving to death we didn't know what else to do. We went back to Boston for follow ups with neurology, genetics and we were able to get an appointment in their motility clinic. The motility clinic offered us a different medication to try as a last effort and so far it is working. He has gained a couple of pounds and is eating decently. However, the medication will not cure the problem and is a bandaid to the situation. We are now in an off cycle of this medication, you need to cycle on and off for it to be effective, and we are back to not eating and gastroparesis. Another monkey wrench in the situation is when his stomach is not emptying he is not absorbing his seizure medications, which is obviously a huge problem. We are counting the days until we can cycle back on and have our family feel better again for three weeks.
We are continuing some genetic testing and will be doing a 48hr monitoring for seizures in a couple of weeks. This is just a glimpse into the big picture that is Jack, the best update on our largest issues. As always, thank you for all of your love and support and for hanging out with us in the "grey".
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