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Tuesday, April 26, 2011

Mark this day on the calendar

It took Raya almost 18 months but she FINALLY made it through an entire doctor's appointment with NO vomiting and not even any crying!! In all of her many, many doctor's appointments, that has NEVER happened. In fact, not only did she make it through the whole appointment without crying or vomiting, she was even cute & charming for most of it. :) She was on a feed while we were there so she had her little backpack on and walked right into the exam room like she owned the place. After she got weighed (23lbs 15oz) I put her diaper, shoes and backpack back on her and let her wander around the little room while we waited for the doctor. She played while I went over everything with the doctor and then she sat on my lap and let her listen to her lungs, gut and heart (which still has a little murmur) with the stethoscope. She was a very good girl. Then she sat on the exam table (that's usually where it all goes to crap if it hasn't already) and she cautiously let the doctor look in her ears. She behaved so well I could hardly believe it was Raya. If she ate food I totally would have bought her a treat on the way home. :)
We had quite a list of things to go over today but I guess that's typical. We started with the usual: meds list, feeding schedule, how are her symptoms, etc. After that, she said, "Okay, what questions do you have for me?" so I pulled out my little notebook and flipped to the page where I had written down the questions. She laughed and said, "How many volumes do you have now?" :) I told her we're very near the end of Raya Vol. 3. She said someday I'll be able to burn them but I told her I'm keeping them as proof of everything I did for this child so that she'll never be able to be rebellious or naughty because of the guilt. :)
I had previously (and very briefly) mentioned Cyclic Vomiting Syndrome. CVS is a little-known but really awful medical condition which is exactly what it sounds like. People who have CVS go through these awful episodes of unrelenting nausea and vomiting that can last for days, during which they're pretty much bedridden, they can't keep anything down, they're terribly thirsty but don't want to eat and vomit everything they drink, and often end up in the ER getting IV fluids for dehydration. The vomiting cycles can last for a day or several days, and then when it ends they return to normal life until the next cycle hits them. When I had first started researching it, there were a lot of similarities between CVS and Raya's symptoms. The deeper I dug though, the greater the distinction became between the similarities and the differences. In order to be diagnosed with CVS, there has to be a phase in between the vomiting cycles where the patient doesn't have nausea or vomiting. Um, yeah, Raya didn't have that. With her, it was vomit at least once a day and sometimes 8 times a day or anything in between. So bottom line is, after researching it further and discussing it with Dr. S today, we've decided she doesn't have CVS. The funny thing is that Raya is on several of the medications that are used to treat CVS with the exception of the sedatives that are used to aid in stopping an active vomiting cycle. Hooray for ruling out yet another possible diagnosis. :)
Speaking of vomiting, one of the other things I needed doctorly advice about today was this. Now that Raya is FINALLY under control with all of the things that were so wildly out of control before, which it took us 15 very long months to GET under control, I'm feeling very torn between wanting to push her to transition back to gastric feeds so we can get her off of the GJ tube and back to a G tube and wanting to just leave well enough alone and not rock the boat. We worked SO hard for SUCH a long time to get to where we are, and part of me is afraid that if we push too hard too soon to go back to gastric feeds, we'll undo everything that we've done, meaning what if we push her to get back to gastric feeds and her vomiting gets out of control again. Then on the other hand, since we have finally made huge steps forward in getting her symptoms managed, we are finally in a good position to make the transition back to gastric feeds. Dr. S said that we definitely need to push to get her back on gastric feeds because getting rid of the GJ tube would make our lives much easier. I'm not disagreeing with her but the skeptic in me thinks back to life before the GJ tube and wonders if it's possible to feed Raya 100% into her stomach without the vomiting coming back. I guess the key is to move SLLLOOOOWWWWWWLLLLY with her. SO that is the plan. We're going to slowly increase the amount of formula that goes into her stomach and see how she handles it. Should be fun. (Note to self, buy a tarp to put under her crib just in case.)
Due to her sudden interest in water, we're going to be redoing her swallow study sometime in the near future. The kid likes the way water feels in her mouth but chokes on it every time she gets any down her throat so we may have to start thickening the water that we give her to play with. That's expensive play water but whatever works, right?
The other thing we talked about was whether or not it's worth it for me to take her back to the allergist. When I took her before for food allergy testing, even the positive control was negative and it's most likely because of one of her medications (an anti-depressant used to prevent retching) which can apparently suppress histamine reactions. Anyway, the allergist had said that if her GI doctor was okay with taking her off of that med to redo the testing, we could do that but when I asked about it today she said she doesn't want to do that. It's fine with me, I don't want to disrupt the good thing we've got going here either, but it makes me wonder if it's just going to be a waste of time & money to go back. I might still take her though because she's had eczema on her legs ever since we switched her to her new formula, which is hypoallergenic but not as hypoallergenic as the old formula. Ugh, decisions.
Well, that just about sums it up. Onward and upward. :)

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