And finally some answers......
So it seems that Rhett has a little condition called Dysphagia. Basically what is happening is he is aspirating liquids when he swallows them. The worst part is, is that he is doing it silently, so we had no idea.
What this means, is that when he is taking a drink of something, like his beloved Pediasure, and he swallows it, rather than going down the esophagus into the stomach, it's going straight into his trachea and down into his lungs. When he does this, he doesn't try to cough it out or anything, he just let's it all go down.
So here I have been told that we need to try to get him to drink liquids, and since he has lost his ability to suck on his bottles, I have been trying to give him liquids through a straw not knowing that it's been going into his lungs.
Here's the fun part, we have no idea if he has had this since he was born, or if it's from the airway surgery. So we will repeat this swallow study in 4 to 6 weeks. If he still has it, then they will put a G-tube in. We still don't know about the Nissen, but go in the first week in May to the Dysphagia clinic at the hospital and we are also getting a referral to the GI Dr.
Meanwhile, the feeding tube that we thought we would only have for a week or two, is now looking like it will be for a month or two instead. If we do give him any liquids, they are to be thickened to a honey consistency, and we are only supposed to do it a little here and there so that he doesn't develop an oral aversion, and to help build up the strength in his mouth.
He can still eat soft solid foods like his favorite, Spagettio's and Green Beans. But most of his nutrition, and all of his liquids as well as meds will be via NG tube.
So basically the reason he was acting so yucky was that I was pushing the fluids trying to get him to come off of the feeding tube, and it was all going to his lungs. But once we got him in the hospital, and only receiving IV fluids, and tube feedings, he was able to clear out those lungs and his sats got better, and wow, he is my Rhett again.
We still have a long road ahead, but it feels really good to have some answers.
Oh, also Andy made a mistake last night with the heart rate thing. The reason his cardiologist was in there, was that his heart rate was 42, not 62. Have I ever mentioned that for a child Rhett's age usually when the heart rate drops to 57 they start chest compressions? Yet here is my little boy, who doesn't play by the rules, lying in bed fast asleep, nice and pink and puffy, and a heart rate of 42.
He had more than a few people squirming last night.
We have officially gone from the label of Bradycardia to Extreme Bradycardia, and boy can he send those monitors into a fury of bells and dings. But the good news is that his heart was firing the way it should during these episodes, and he had good wavelengths, so they weren't too worried about it. Just him I guess.
We have cut down on his Pulmonary Hypertension meds.
Oh, and his pulmonary pressures have gone down. He had an echo yesterday, and his heart function is good, he still just has mild to moderate leakage around the tri-cuspid valve, and his heart function is good.
He did however think that we were torturing him with the gel to do the ultrasound, and was getting his feeds at the same time, and puked all over the technician. I looked at her and said, "So where he's so upset, do you want to stop his feeds?" then she says, "Uh yeah, I guess that would be a good idea." ( This was his floor tech, not the one doing the echo). Here's Your Sign.....
So yeah, that's our last two days in a nutshell. They have increased his feeds to smaller amounts over a longer period of time, so he is hooked up to his pump alot. We are going to be doing alot of movie watching, and it's going to be hard on him where he is generally an extremely active child.
I think I am going to have to invest in some more Elmo's World and Sesame Street DVD's because the 4 that we have are driving me CrAzY. I can watch Signing Time over and over and sing the songs, and I don't get sick of it, but man there is something about the same Elmo movies over and over that just get under my skin. I just can't resist that cute little voice saying "Ah-Moe!!" I give in, I have gone soft, I admit it.
Anyways, that's it for tonight. If I ramble, I am sorry.........No sleep can do that to a person. I am going to love sleeping in my own bed tonight, and I swear if anyone comes anywhere near us with a thermometer and a blood pressure cuff at 12 am and 4 am tonight, there will be problems, big problems......... ;)
Thanks for all of the prayers. We are so blessed to have such wonderful friends.
Friday, April 11, 2008
And finally some answers......