1/18/2011
Cade's surgery went well. We spent a weekend in the hospital and were able to come back home after being trained on how to clean around the button and how to do his feedings. It is not much different from what we were already doing. Cade was uncomfortable and a little fussy after his surgery, but overall he did great. I think he was more bothered by the cannula in his nose and the IV in his little hand than he was by the g-button. He needed oxygen for only about a day after the surgery. They started his feeds slowly and we started out giving him just breast milk to make it easier on his stomach. Then we gave him the formula and breast milk like he usually gets, and he did fine with that too.
I was very worried about cleaning the button and giving him g-tube feedings, but it is really not hard at all. Of course I wish he would just eat, but this is not as hard as I had imagined it would be. I am still a little queasy about cleaning around it, and if you forget to clamp the tube, stomach contents can ooze out of the tube. I must say that is pretty gross, but I suppose it is no more gross than when Brenna would spit up on us all the time. That was still stomach contents, and it was everywhere.
Since we have been home, we have noticed that he is a lot more vocal. He is making more sounds which is a great improvement. His voice is still somewhat raspy and will probably be that way. He can now lay on his tummy, and it doesn't bother him at all. He is still not rolling over or crawling yet. I don't know if it is because of his prematurity, his size, or just his laziness. We are working on that. He is perfectly content with watching Camdyn roll all over the living room, and she has become very good at that. We will be starting with a new therapist for feeding soon. I hope she will be able to shed some light on this and help him make some progress.
Our new problem is that I found out our insurance only covers 20 therapy visits per year, and he is going to need way more than that. I am stumped on what my next step should be to get him what he needs. We may start looking into getting a secondary insurance. If anyone who reads this blog knows what to do when you don't qualify for Medicaid, your insurance doesn't cover what you need, and the free therapist through Early Childhood Intervention is completely useless, please let me know. Appealing the insurance won't help; I've already been told that 20 therapies is the hard limit meaning they will not even take appeals for more. Asking for a new ECI therapist won't work because she is the only one who services our area. Why is this preemie world so difficult to navigate?
Camdyn visiting Cade in the hospital
my sweet baby boy in the hospital
What a handsome face with no tubes or tape!
1 comment:
We live in Virginia first off. In the NICU i was told we wouldn't qualify for medicaid so don't bother with it (becuase we made too much money, ie, we had jobs).
When we got home, there was a case worker that called us from our blue cross blue shield insurance (she was a former nicu nurse who's job was to talk to parents of preemies and help with anything we needed! wow! She insisted we apply for medicaid becuase my son was "disabled" based solely on his birth weight (of 620 grams). So he did in fact qualify based on the "EDCD waiver". It's elderly and disabled something something. So I filled out the medicaid paperwork writing in every margin and "comment" space what his deal was- preemie, on oxygen, on reflux meds, etc because the questions asked didn't really explain our deal. Then we had a nurse come to the house to get more info. It took 2 months or more for the process but we have medicaid! I would think with the g-tube he would qualify. I highly encourage you to spend the time to fill out the application. We have no copays for any doctors, therapists, etc becuase of 2 insurances. It's wonderful.
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