Tuesday, January 11, 2011

Round and round we go. Where we'll stop....well, who knows.

The boy and his GI system. Need I say more? This system of his is just not happy with even the minute amount of formula we try dripping into it. As I stated in previous posts, this small amount of formula, referred to as trophic feedings, is to help his liver cope and function amidst the added stress of TPN.

We're currently starting another medication to help with motility. It's a med that we used with little success prior to starting TPN. We're hoping it will help push through the large amounts of bile that's currently backing up into his stomach and draining out of his G-tube. While starting this new med, we have been instructed to stop the trophic feedings, chart output from the G-tube and then restart feeding through the J-tube at 5ml/hr (down from the miserable 7ml/hr that he has been battling the past few weeks) after we have gotten this med well in his system.

This break in enteral feedings has at least left this young boy feeling as pain free as he gets, which does us all good. Maybe this added medication will do the trick this time, maybe it will do what we were hoping it would do the first time it was tried....we can hope.

On an extra good note, his labs from last week are showing improvement in all areas. Are you celebrating with me?! Wooohooo!

This morning we had an impromptu appointment with the seating clinic at 'our' hospital. These appointments are the easy type. It's helping, picking things out that will hopefully help him in one way or another. We can't fix his body or create a magic potion to take away all his pain and discomfort, but I will do everything in my power to find ways to help him. Whether that is adapting our home and or routine, battling insurance for needed equipment or trudging my way through the school system, I will be doing it. That is something I can do!

During our early morning appointment we covered much more than I was thinking would be discussed. We were very pleased and felt it to be a very productive meeting. We'll be ordering several items this year....an activity chair with a hi/low base for seating within our home, a tray for his wheelchair and newly angled foot rests and (once we get the script for it) an adjustable hospital bed. The last one is something that I'm slightly hesitant about, only because of it's title...hospital bed. That sounds intimidating and concerning to me, but after talking it through with our contacts at the clinic, it's worth a try. Wyatt has been disliking the bed he is sleeping in now. So much so, that he was asking to to go the mattress store on New Years day. Apparently they were having a "big New Years SALE" and Wyatt caught the commercial on TV. He gets very excited about the thought of a comfy bed and the possibility of being more comfortable. However, we're thinking a mattress in a store won't cut it for him. He complains of discomfort in other mattresses that he sleeps on, as well, not just the one in his room. He says the most comfortable beds are in the hospital. I have to say, I have not heard that same sentiment from many other people! We're thinking it's the adjustability and capability of positioning. It does make sense. So, for him and for the sake of his comfort and restful sleep, of course, we'll go that route if it's thought to be best. So, I have a few emails to make (one for the script)! And then comes the hoping, praying, crossing fingers and doing everything in our power to will the insurance to approve all that is asked of them on the first try! Is that too much to ask? If I'm gonna dream, I'm gonna dream big!

Mommy - "Jill, do we think trying to ride the kick board down the icy slide is a good idea?" 
Jilly, very enthusiastically- "YEAH!"

In our neck of the woods, it snowed last weekend. Not enough to really get into playing, but the kids enjoyed throwing snowballs and romping through the slushy white stuff. This evening, it's snowing again and it's forecasted to be more than last. A snow day tomorrow, perhaps? We'll see.
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