Namine had clinic visits galore today. She had a swallow study, determining how well she can eat and drink; a pre-surgery meeting with Dr. Denny, her plastic surgeon; and a visit to GI (gastrointestinal).
Namine had a video swallow study today and what that entails is eating food laced with barium. YUM! They mixed her juice with it, and her yogurt, applesauce and even made her dip her veggie stix in it. Talk about gross. But it was worth it. Namine did alright with the study. It showed that she is silently aspirating some of her liquid, which means that her vocal chords are not pulling shut fast enough to keep the liquid out, but the scary thing is that she doesn’t cough. We usually say the stuff went down the wrong tube and then you talk like a bass for a while because your throat is horse; well, it didn’t even faze Namine. So we have to be careful with how much liquid we give her. A small amount with a straw is fine, but not out of a fast-pouring cup, like the sports bottles we usually let her hold herself. As far as the food goes, she did just fine.
Next up on the day’s agenda was to visit Dr. Denny, Namine’s plastic surgeon. Our work with him is half done; he did Namine’s jaw distraction (which went swimmingly!) and coming up is her cleft palate repair. Today’s meeting was just to go over some of the finer points. Namine won’t be able to eat anything harder than Jell-O, and she can only drink liquids in open containers. That means no sucking any liquids out of containers, like straws, sippy cups, that kind of thing. They expect that she’ll be in the hospital for no more than 2 days after surgery, which should itself take no longer than an hour or so. As for recovery, she’ll need 2 weeks for her palate to heal up. That means arm restraints for 2 weeks. Oh, she’ll love that. But we recognize it as necessary; the palate is extremely fragile, and we’d like to do this once, and only once.
To talk about the GI visit is like writing a book. These visits are called clinic visits so they can take up your whole day. A three hour visit to basically tell us to do what we have already started to do, and that is to get Namine’s feeds to run faster and for her to eat more food by mouth. The visit starts off with sitting in the room for a half hour, then a nurse comes in and talks for ten minutes and tells you that they have to crunch some numbers. Then again you sit for another twenty minutes and the dietitian comes in and talks about what Namine is eating, and they say, well, she hasn’t gained weight the way we want her to, disregarding the fact that she has had diarrhea for 4 days and lost almost 2 pounds, but they are disappointed and she isn’t where they want her to be. Then they say, we have to go crunch some numbers and leave. You are once again left alone for another 20 minutes and then the doctor comes in and tells you I have to go and crunch the numbers. Okay, by now we’ve been there for three hours and Namine is tired, I am tired, and the nurse is tired and whiny. Do you think we can go home yet? No! We have to wait for all the numbers to be crunched. Another half hour goes by and the dietary lady comes back with a schedule written for a two year old to follow. Yes folks, that’s right, a two year old. Are you ready for the plan? Here it goes: increase by 5 mL this week, increase the rate by 5 next week and keep doing that, week after week. But wait, I have it all written down in a detailed log. Oh man, I am so excited because I can’t remember the number 5. Now we can leave. We got to the hospital at 10 AM, and it is now 4:30.
You know, it’s kind of funny how we go through cycles of lulls and excitement (I could do without the excitement, thanks). We expected Namine to get sick over the winter like she did last year, but she was actually really healthy. Us, too; I usually come down with the flu during the autumn and winter months, but not this year. (Teavana probably helped. Over the winter, I drank rooibus chai and metavana tea religiously, much to the dismay of my wallet.) And then, we round the corner into summer (okay, Wisconsin summer is hardly worthy of its name) and we all get sick. So much so that we almost had to have Namine admitted into the hospital again. Even now, we’re of the opinion that if she throws up one more time, we ought to bring her in, just to make sure she keeps enough liquid in her.
I don’t know the name of the family, but a little special needs patient died today. I don’t know the cause, but please just say a prayer for that family. All of God’s angels are in heaven!