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Wednesday, July 25, 2012

First GI visit

After 3 long months, we finally saw Raya's GI doctor again. It felt like we hadn't seen each other in years! Especially after waiting for 40 minutes to see her. :) It doesn't usually take that long and from prior experience, I know that if she's running behind it's usually because she's seen a patient that was struggling and needed extra time that day. Raya has been that patient many times before and I'm just glad she's not anymore. Fortunately today she was happy while she waited. She played a little tic-tac-toe in the waiting room:

And then we headed back to the exam room for her measurements. She has officially outgrown the infant measuring board so she got to be measured like a big girl with the ruler against the wall. She was 36 inches tall (91.44 cm) which was a growth of about half an inch since her last visit in April. I actually expected her to have grown more than that. She seems tall lately. :)

Her weight was back up to 13.6kg (30 lbs), which was almost exactly what she weighed in April. She lost about 2 pounds between the end of April and the end of May and has finally managed to gain it back. I was worried because her oral calories have been hard to track and I think there have been a few days when I've underestimated. Thankfully she's grown in spite of my poor calorie counting skills and her inconsistent oral intake. Thank goodness for nutritionally complete formula, that's all I have to say.

After the MA took her measurements & wrote down her meds, we waited. and waited. and waited. This pretty much sums up how Raya spent her time while we waited:

For the first 5 minutes, she played with crayons on the exam table:

Then she jumped, climbed all over me, found "farties" in my purse, begged me for a "fen" (pen), got into the drawers, tried to stand on my lap to push buttons on the thermostat, sang songs about things that I couldn't decipher, sat on my lap and squirmed, asked me "wazz-at?" every time she heard a noise from outside the room, and meowed the WHOLE time. Being enclosed in a small room with her for that long was physically exhausting. I love her dearly but I swear she siphons the energy right out of me!

When the doctor came in, she suddenly got quiet and climbed up on my lap. Stinker! We chatted for a few minutes to get caught up on everything, review medical history & discuss concerns. While we chatted, Raya ate a roll of Smarties (aka farties) so she could show her doctor how good she's getting at eating, and of course she was very proud of Raya.

She still has a little heart murmur but it hasn't changed since her last visit. We talked about her skin problems (which we're pretty sure are due to her formula) and about the fact that the current formula's gastrointestinal benefits have outweighed the skin problems. And last but not least, we talked about her left leg & trunk weakness and how unbelievably active/energetic she is. She's a toddler to the extreme!

There have been a couple new ones that have popped up recently. One is the fact that she coughs and chokes a lot when she drinks water and ultra thin fluids. I discussed it with her feeding therapist yesterday and she and I agreed that because she's been drinking water for over a year now and has almost always used an open cup to drink out of, it is enough of a concern to investigate further and make sure she's not aspirating ultra thin liquids again. When I talked to her doctor I couldn't remember when she'd had her last MBS (modified barium swallow study). I didn't realize that it had been in May 2011. I thought it had been more recent so her doctor is going to order one. I think it's a good idea even though I will absolutely be surprised if anything turns up abnormal. Right now all she ever drinks is water but if she isn't swallowing safely, then when she does start drinking other liquids she's at a higher risk of aspirating and the complications that come from that.

Another concern that has been an issue for at least 2 months or more is that Raya almost always has small amounts of blood seeping out from around her G tube. Usually there's not much and it's not bright red. Today when I took her gauze off to change her tube (so she wouldn't have a grimy 3 month old leaky tube in when we went to the doctor) there was bright red blood and a little big of greenish goop on it. We don't think it's infected at the moment so the doctor said to give her Carafate for a week and see if that will help clear up whatever irritation is causing the bleeding. I think it's exactly what she needs, especially because we changed her tube today and that always causes a little irritation to the stoma anyway.

We're also going to make a change with her Prilosec. Right now, she's on an adult-sized dose and she's been on PPIs (proton pump inhibitors; shuts down some of the acid producing pumps in the stomach) since she was 1 month old. That is a VERY. LONG. TIME. It has been completely warranted, but it's time to see if she can tolerate a reduction in her dose. After a week of Carafate to take care of the irritation in/around her stoma, we're going to cut her dosage in half by cutting out the night dose and see how that goes. If she tolerates it well, then we might keep reducing it and see how she does off of it completely. Who knows, maybe once she's off of Prilosec we'll start tapering her other med.

Overall, things have moved in the right direction recently now that she's recovering from the rough time she had in May. Until today I had forgotten that she'd lost so much weight between April and May. When we were talking about her being back up to her April weight, I remembered that she'd been sick off & on in May, which meant she wasn't on full-strength formula for a few days, and she quit eating for a couple weeks. Once again, I am feeling much better about our decision to completely skip the nursery class at church and wait until she's 3 and old enough to go to the regular classes that don't involve germy toys. I've flip-flopped back and forth for months now about when to start taking her to church and seeing today that it took her 3 months to get back to zero net weight gain makes me feel like we've made the right decision.

Calorie-wise we're keeping things the same and hopefully she'll just continue to increase her oral calorie intake so we can decrease her tube feeds. We're not doing a weight check in a month like we usually do so we're going to see her again in 2 months instead of 3 just to make sure the med changes are going well and her weight is still going up. Overall it was a good visit and we're moving in the right direction. Heck, any visit that Raya gets through without crying at all is a great visit. :) Every time we see GI it just reminds me how blessed we are to have such a great doctor to work with. A good doctor makes all the difference.

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