Friday, January 7, 2011

Update 3:30pm..Friday

TPN still going. pedialyte barely going. thinking swelling and rash from not enough proteins. hoping to slowly increase the tpn "meat" over next few days. going for a GJ change at some point. Still trying to figure out the GI issues.  Doc has a few things that she is wanting to maybe try but if these 2 things don't work then she's out of tricks up her sleeve and we will either need to transfer to a children's hospital or we will go home on TPN and work to get into a GI specialist of our choice.
She's adding a special cream to put on his rash to see if that helps.  We are also going to start wrapping around his body to try and keep the GJ in place better.
OT and PT came this morning.  They were both really concerned about his hips, legs and feet.  He has low muscle tone and is very tight.  They are going to start him on range of motion and really working with him.  They both say he needs more intensive therapy than he's been receiving and are going to really push for that.  Touched on braces conversation but will see.  They brought him in a big floor mat that we can "play" on the flloor a bit.
RT is in here still every 4hrs and doing CPT.
Alright time to go down to radiology.

***Update 3:30pm

we are back from radiology. Figured out the problem with the G, but unsure with the J. He is wondering if eli is maybe having spasms in the intestines, and wondering if we should try an anti spasmotic drug before a feed and see if that makes any difference.
sadly all the tests are coming back not showing an issue but there clearly is one and nobody knows what so we can't fix it because of that.

1 comment:

Linda said...

I am heartbroke just reading your blogs. Poor Eli....he has been through so much and continues to endure much more. I will continue to pray for Eli. I sure hope the Lord hears these prayers and Eli starts to turnaround. Pleae keep the updates coming whenever possible. I can't imagine what you're going through but am always thinking about your family!!

Continued prayers!!