Things have been very interesting and eventful over the last 36 hours. We have been trying to figure out a bunch of things for Robbie; pain control, reflux control, nutrition, bowel movements and limiting his movement. To say that the stress levels are high here would be an understatement. Robbie decided to be up from 2:30 - 11:30 p.m. yesterday and just party the entire time. They took the epidural out and you could tell that he could start to feel his feet, as they were wiggling all night long. The epidural was taken out because of the bacterial infection that he has and their fear of the infection getting into the line and causing more severe problems. We have found out in the last few days that it isn't the pain that is really bothering him, but his acid reflux. He has had this problem since birth and when he is properly medicated it is not an issue. Here has been laying flat on his back and with the feeding tube in place this opens up easy access for the acid to reflux, thus causing him to stir, thus causing the doctors to add more sedative, thus causing him to be more constipated, thus causing them to add more medicine, etc, etc...
Dr. Gearhart came in today and said that we could raise the head of his bed up to 30 degrees and this will hopefully ease the reflux. Both Saree and I feel like the pain is under control, for now, and that the reflux is the culprit of the discomfort. Hopefully with his head raised some he can get the proper rest that he needs to fully recover and be able to hold down his Pediasure.
His feeds have been started and stopped multiple times now because he keeps throwing up and making us start over each time. We know that he needs his nutrition and we are glad that the doctors are finally listening to Saree and going to take the increases in feeds really slow. She suggested this to them last week and they kept trying to force more food into his stomach which has been a disaster. Now, after almost a week, they are going to follow Mom's advise and go slow in the increases. We hope that this plan works better so he can get a full belly and start to become more regular in his bowel movements.
Dr. Gearhart also said that next week Dr. Sponseller will take an X-Ray of the pelvis and it will be like Christmas morning here, either we get a present or a lump of coal. Dr. Sponseller will be looking for the bone regrowth where he had to break them. If the growth is good enough we can get the fixator out a few weeks early and just use the traction for the rest of the time (getting a present for Christmas) or the growth isn't good enough and the fixator stays until the next X-Ray (lump of coal). We obviously are hoping for a present but understand that we are at the mercy of his bones and whatever happens is what is supposed to happen.
I think that is about it from here on the 6th Floor but will update the blog again tomorrow morning and let everyone know how the rest of today went.
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