The test that Kiera had to see if she had a Protein losing Disease came back negative! That is great news, and with starting Beneprotein, her levels are back in normal range. It is still not clear as to why she was so low for so long but sometimes you just have to be happy with what's in front of you at that moment.
The edema that Kiera had is also gone now and she is down 7 LBS. Most of that weight loss might be from the edema but some might be from a vomiting protocol. It turns out that Kiera is not always getting her full tube feedings and is losing more fluid than we are replacing at times. This is a tough time of the year for her with spring around the corner. We now have to keep our eyes on the potassium level since we are venting her more often again.
We had a great appointment with one of Kiera's Doctors last Friday (I feel bad for him sometimes because it's never just one thing, and this was a follow up from her hospitalization, and we never talked about that, ran out of time) I pointed out that when Kiera needs to be vented she can lose 500cc or more and also during the time that she is vented she is missing some of the feeding. But in the end, we really have no other choice but to follow this protocol otherwise Kiera is at more risk for aspirations.
Her Doctor has ordered a few more tests to see where Kiera is at and her RN wanted another EKG done because of the tachycardia that developed about four years ago and suddenly. That was the same time that the low blood pressures started too. We are also going to be doing a post-void residual volume to make sure that she is emptying her bladder because there is a concern that if we are adding more water to help her void, and she is not emptying her bladder, that could then back up into the kidneys and cause other issues.
We are going to see if Kiera can have another VEEG to see if the vomiting is seizure related. If it turn out to be, there is really nothing we can do about it, but if they are not then we have other things to look into. The Diet has been questioned because it's not healthy (high fat, low carb, low protein) she has been on this for 7 years and when she was not on it, she was having more trouble with vomiting and she just hung her head all the time. We have been tossing around the VNS (vagus nerve stimulator) I need to talk with her epileptologist about the other benefits the VNS might do to help Kiera, not only for better seizure control but for digestive and heart issues.
Her Doctor said that Kiera is a rule breaker and things are a double edge sword with her. I think that is so true. things were so much easier when she was younger when all we really had to deal with was the epilepsy and the vomiting. Yes there was the hours on end crying and then laughing and the not sleeping for days then sleeping for a few more right after. These issues are a bit more complicated and seem to have many levels to them. I am so glad that we have some very good Doctors that don't just blow us off. We have a wonderful team and all but her primary specializes in the special needs population, we are very luck!