Well, as much as I’d like to say I’m cool as a cucumber… I’d be lying. The day started off with a repeat version of Alyssa’s meds. All.over.Neil. Poor guy. I sent a text to Ms. T to ask her to call when she could. I knew it was Monday and the GI was out of town so it may be a bit. I was on and off the phone all day with nursing, the food deliverers, etc. We managed to get everything all squared away and get a nurse out on the same day.
The nursing visit was uneventful. Honestly? As reassuring as it is to know that if we need it we can pick up the phone and have a nurse available. It is maddening to me to have to go through Alyssa’s entire history with a stranger. To answer questions that don’t pertain to the GI drama at all. I know it sounds silly but it just gets frustrating to say incontinencia pigmenti and get a blank stare. Or better yet? “Hmm I have no idea what to put that under on the paperwork.” No biggy. I get it. It isn’t common and it is pretty multi-systemic. I’m just being the whiny patient’s mom or more appropriately the patient’s whiny mom. On a lighter note … all of Alyssa’s vitals checked out beautifully, she seems to be healing well, and we may have gotten some insight into the med barfing. See, the way the syringe has been hanging to vent also permits air to enter her tummy when there is no liquid flowing through. So, we made a goal for this evening to do a massive burp/venting session just prior to meds.
After the nurse left and things began to settle, Ms. T returned my call. Have I mentioned I.love.her. Seriously? She is the perfect person to do her job. Somehow she and I just click. She *almost* makes me want to go back to school to be a nurse. LOL. We talked for a good while about the days. Tried to iron out the kinks. I apologized for the use of the expletives in my text the day prior and she got a good laugh. Really? It helped convey the tone of the situation… or at least that is what we are telling ourselves. What I love about her is her ability to stay informed, inform, and get informed all without making it a “I know something you don’t know” type situation. She makes it to the end of most days still pretty darn chipper and her attitude has a way of making me calm down and laugh for a bit.
So, after a bit of nursing and relaxing we attempted the meds for a third time. It was a near miss but since we knew the mass air bubble was eminent we managed to get her to push it back out the syringe instead of out her mouth and then gradually let her digest the meds. Trial and error is our friend. We also began to give her gas drops today to see if possibly it would help with the over production of air. However, this early int he game too much air is not unheard of. We are getting this… little by little.
As dramatic as some of the day is it is all a matter of figuring out what works at this point. I know there are going to be hectic days but the reality is that she will be getting the nutrition she needs. She will be getting the meds she needs. Most importantly? I haven’t had the normal 4-5 hours of FIGHTING to get her to eat. I am stressed but I know that when it comes down to it at the end of this couple months… we will be in a much much better place.