Today Chris (a friend), Micah, Emma, and I headed over to Orlando to the children's hospital to have Micah's swallow study done and Emma's bloodwork drawn.
A few weeks ago during his upper GI we found out that Micah was aspirating some and we were told to thicken everything until we were able to do a swallow study. Then yesterday I got the call that they could take him today instead of next Friday and that was better timing for me so we worked it out to go today.
First off they asked me to bring his food and bottle, but what they didn't realize is that he is VERY preferential to HIS bottle and wouldn't drink out of theirs... and thus began the not-so-productive study!
We started with spoon feeding a few very thick spoonfulls of barium filled cereal. Then a thinner puree, then a bottle that I thickened to the texture that he has been getting at home here lately (very thick!) and he took all of those ok- tho he didn't like them (obviously). Then they handed me their own bottle with a latex nipple (versus silicone that we use) and a thinner but still-thick liquid in it. He put it to his mouth and was DONE. He then proceeded to cry pretty much the rest of the time. I was able to calm him enough to try spoon feeding him some thinner liquid which of course he wasn't so happy about anyway, but whatever.
So the good news is, the things he DID swallow he didn't aspirate. The not as good news is that he didn't swallow anything more than 1/8 of a tsp of anything other than the first few sips of the bottle and the super thick and thick cereals. So... we don't actually KNOW how he would do with a 'honey texture' of liquid or a thin liquid if he was actually drinking it.
For safety's sake, since we are aware he aspirated the barium without any additives, he's been put onto a 'honey thick' diet. We were told to add 'simply thick' which is a gel that thickens liquids without adding any tastes and without the difficult side effects of constipation, etc to each bottle. That said, we already add babyfood to the milk at the moment so as long as it's the consistency that they want us to use then it's fine. I will pick up some to have on hand especially since some babyfoods are thinner and I don't want to always use cereal.
Also, we were told to use a cross-cut nipple instead of our own which has a slightly enlarged hole. What he was using in Ukraine was similar to a goat's bottle and was so flexible with such a large hole in it that all he had to do was slightly close his mouth on it and it would freely flow into his mouth. Emma too. So since coming home we've gone from bottles with LARGE holes in them (like, a big ole 'X' cut into the nipple) down to now just a small hole about the size that a thick sewing needle would fit through.
Tonight the kids all had speech and I showed her the results we were given and talked to her about the different nipple and she said that I could look around for a 'cross cut' or a 'y cut' nipple, but she wasn't sure where to find ones like that around here without changing the type of bottle we used (like changing to dr brown's bottles). We don't intend to switch from Wal-Mart $1 bottles to Dr. Brown's $6 bottles for Micah to have a different nipple. Our ST doesn't think it's necessary either. The other issue we have is that if we DO find a similar nipple that is a 'cross cut', we would have to keep those for just Micah because I'm sure they're more expensive and Emma is chewing through the nipples about every-other sitting. We can't go and buy expensive nipples for him and have them mixed in with hers and have her EAT them!
And so... we pretty much go back to what we were doing, but we know we don't have to thicken it quite as much, and now it's "on record" that he has a problem and that it's recommended that he have thickened liquids. Woo hoo.
The other thing mentioned is that he has a very disorganized swallow when spoon fed. Not exactly sure how to get past that one except through continuing to work with him on feeding with a spoon. I do wonder what the report will say. Will it say he was "safe" with thin liquids even tho he only got 1/8 of a tsp down? It's not like drinking from a bottle by any means. Anyway, I'm glad they decided to 'officially' leave him on a bit thickened because he has all the signs of aspiration (constant upper respiratory infections, hospitalized for pneumonia in April, coughs during feeds and after). Unfortunately, I didn't KNOW that these were signals to aspirating until after the upper GI when they started asking me about all these things.
All in all it wasn't super productive but we were exposed to a year's worth of x-rays (what you'd normally get in a year of just walking around was put in during this one session) and I believe a year's worth for the upper GI study that was done a few weeks ago as well. Good to know, isn't it?
Emma's blood draw went fine. They stuck once in the arm and got the vein but it wouldn't draw. So they took it from her foot. The warm foot. Not the one that she took her sock and shoe off of on the way to the hospital and that she then ate the sock from the rest of the way to the hospital and we then fished out of her mouth (it was a big sock, don't worry!) and left soggy on the floor of the van then replaced the shoe over her sockless foot for the day. Not that one. The other foot. Her arm bruised horribly from the turniquitte and some bug bites that she had on her hand/arm all have busted blood vessels all around them so they stand out even more red and annoyed now. Poor kiddo :(
We had a CBC, PT, and PTT run. Hopefully all will line up nice and pretty and she won't need any more sticks until next thyroid screening that's still months from now!
Meredith: I am glad things went OK for you today. I believe Gerber sells cross cut and "y" nipples. I used to get them at Target or Toys r Us. Hope this helps.ReplyDelete
I've had so many x-rays all my life, I'm really surprised I'm not glowing or something ;-)ReplyDelete
And that's just the x-rays, not including the MRIs and all the other tests that have been run on me.
I have Dr. Brown's bottles you can have if you want them! I was considering getting new bottles for our new baby anyway, so you are welcome to have them. I have A LOT!!!ReplyDelete
Can you just cut a small cross cut in a regular nipple with manicuring scissors, or poke it with the tip of a sharp knife ?ReplyDelete
you can call the similac, pediasure or enfamil phone number located on the product and they sell the premie nipples. we just had twins that had a weak thrust and had to get them. sometimes you can find them on ebay.ReplyDelete
Wow, what a long day! BTW, I've added you to my blogroll!ReplyDelete