Her body just isn’t sure what to do with the growth hormone!
That was the jist of today’s appointment in milwaukee with the endocrinologist. Genetics referred us to endo because they were afraid we were looking at a disease which would limit her growth hormone, and hence the failure to thrive we’re still dealing with. BUT – it appears that that is not the case. Her body is making growth hormone, but it’s just not converting it into usable growth. This is, again, due to her “MALNUTRITION”. So essentially we found again today that she is malnourished because she is malnourished. Plain and simple!
duh! why didn’t WE think of that????
Seriously though – it was a good appointment. It is reassuring that kendall appears to have no hormonal issues related to her growth problems, and that once we do resolve some of the GI/nutrition issues, things should start kicking in. And really – things are getting better on this front. She doesn’t LOOK tiny or growth deficient in any way really, and for that I am grateful. She looks pretty good and normal in clothes. Her bony little birthday suit is another story, but luckily that’s not what most people look at her and see.
She is doing so so so good this week. It is exciting to see her looking and acting so healthy, so normal! She has her horrible junky cough still, and her typical low grade fever, and now has a nice lime=green shade of snot pouring out her nose. I am praying that her body is in a good enough place to finish fighting this one off on her own. She is hangin’ tough so far, but no telling how much longer she’ll have to do it to kick this little bug.
the other news out of today’s appointment was that her issues of last weekend landing us inpatient were definitely related to dehydration and liver function. It appears that whatever metabolic process is burning through her food is also quickly burning through the fluids she takes in (which we do know is almost double what her body SHOULD need for her height/weight/age). Days when she throws her low-grade fever in eat through that even faster. So she is most likely living near the edge of “dehydration”. Meaning that 6 hours off her tube is detrimental, as we saw. When her body gets stressed like that, she doesn’t have the energy stores to stabilize things, so we see multi-system organ failure begin to set in, like we did last weekend.
Bottom line, her liver appears to need the most energy to remain functioning right now – and that’s part of why her liver labs were all over the place last month, including the one looking for tumors. it all definitely fits a few pieces of the puzzle together, but we still don’t have a lot of answers about why this is happening or how to prevent it altogether. We were given a nice little glucometer and instructions on how to use it and when to test. This may not keep us out of the hospital, but hopefully this gives us a little more peace of mind to know when to call the doc, when to go to the ER, and when we maybe just need to dump her full of pedialyte.
Lots of info to take in and absorb, but overall a pretty good appointment. Good in the sense that i walked away from it feeling like i had a few more answers, some good direction, and faith that once again, we are in the right hands at last. I know her docs are all working TOGETHER, as a team, to bring things together. Info gets shared between departments, and they all want to HELP kendall get better.
So – sorry – i am sure this is short and disjointed…maybe tomorrow i can fix it. i had to get some details down though before i lost them all to sleep tonite!
more to come later…
thanks for all the prayers for kendall and I as we were driving to heckandgone today!