Well, I realized it has been so long since I've updated our blog that I have to apologize. Things are so far so good for our little short gut man. Nebraska was a wonderful and hard experience all at the same time. We missed our family more than anyone could ever know, but it was well worth it and Dr. Mercer and his team have done miracle's for our little guy.
First off they have cut his central line infections down and SO FAR SO GOOD, is the saying that we live by right now. They replaced his line after he got a yeast infection in his line while we were there. They said we don't mess with yeast its so hard to clear. So Joel received a new line and now they also have put in what is called an ethanol lock. (that's right alcohol) in his central line and let it sit for 2 hours and this helps with the bacterial and septic infections that he was getting so many of. They have found that bacteria cannot live in alcohol and its like having clorox cleaning.(metaphoric only)We also have his line coiled up and running down his back instead of down the front and this too has helped cut down on infections. This way when he pooh's at night there is not as much chance of contamination.
We went through there intensive feeding clinic while we were there and that was why when we started it I didn't have much time to post as we were there from 8:45 a.m. -4:45 pm and I was drained emotionally like you wouldn't believe. It was well worth the hard work, because now Joel will sit in his high chair and eat 2-3 tbs. of food without throwing a tantrum.
We had our follow-up appointment with Dr. Terry his G.I. on the west coast and she was very pleased and said that Joel is at his full feeds on his formula and we are starting to wean him off of his hydration fluids. Joel has been off of TPN for about 2 months and still seems to be thriving and putting on weight that they are now worried about him having a weight problem. He is running around 29lbs and is 33" in height. We have him on regular hydration fluids and just went from 10-8 hour infusions and volume was cut from 500cc's to 400 cc's so far so good he's tolerating the decrease well and will no more tomorrow as it is lab day.
We are headed for Nebraska for a follow-up appointment and the goal his to possibly take out his central line. His rate is at 77/hr right now and he is getting formula 24/7 for a continuous feeding. Their goal for him is 80 and to be weaned off of the hydration fluids for a week by the time we get there.
He has just amazed the Dr's all around and continues to bless us. Please continue to pray as it is scary to not have his central line and what still lies ahead, but we know that God is watching out for us as he has from the beginning and we trust Him completely.
The biggest issue we have right now is his speech as it is delayed. I'm hoping to start with a new speech therapist that has the same type of treatment that we had in Nebraska. He is getting frustrated at not being able to communicate with us.
We have been going to New Beginnings church and starting to get plugged in when we can. I'm almost ready to have Joel start Sunday school maybe this Summer as if he gets a cold it will be treated like a real cold instead of a line infection and ending up at the hospital for a week every time we turn around.
Joel will be 3 and we are looking forward to an exciting Summer, we will be able to go camping and he might even get to learn to swim. Sorry its so long but it has been several months since I've posted I wanted to get everyone caught up.
Please still keep the prayers coming the weaning process can be difficult and that he tolerates it well. I will try to post some pictures, as for the holidays this was the first year that we were out of the hospital for Thanksgiving, Christmas and NewYears we were very blessed.
God Bless, and In Him
the Vickoren's
Joel, Jason, Ashley and Treena
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