Sunday, March 1, 2009

Home Sweet Home...

Well not really -- maybe I should say home sweet home away from home. Anyway, we are out of the ICU and back on the regular pediatric floor. This is a great step towards getting home, not to mention we are so happy to see out 3E family again. You all mean so much to us and have helped us through so many hard times -- we are glad to be back.

Yesterday evening was wonderful for Gavin -- early this morning has not been so good. It seems like he took a huge step backwards as far as his pain. He is still running a fever which is still a cause for concern. Gavin's underlying issues make this so difficult because children with Mito just do things differently, their bodies extreme reposes to the most simplest changes. This may be the case with Gavin but we just can't rule out infection considering his history. It looks to me like his liver and spleen are becoming more enlarged, which could be the be the cause of the increased pain plus the j-junostomy is putting out a fair amount of blood.

We are going to tweak a few things to try to figure out the cause of pain and also the cause of fever. We need to be fever free to get a new central line so let pray we can figure this all out soon!

7 comments:

~ Lisa @ AbidingThere~ said...

Praying! Thanks for the update :)

Reesha said...

Hang in there Gavin, you are doing great!

MFA Mama said...

Yesterday's video clip was soooo cute! The sweet little man saying "hi" to his sister about did me in. Here's hoping his pain settles down and that once he's over his post-op icky-ness Mr. Gavin enters a wonderful new world of Omegaven and relief from the debilitating infections...

Heather said...

Continue to check in on my sweet little boyfriend.Glad to see things moving forward with minimal hiccups over the last day or so.Will continue to pray that it stays that way.Love the video of Madison.Very sweet.And can I say,how nice to have your own bathroom and shower.We room in with another patient.Can't use the bathroom,instead use the one ALL the other parents on the floor use AND their visitors,yuck, and well let's say not fun.And all this for a month or more.Fun times.Love to you all.

Lorra said...

Praying that God is holding Gavin in his healing hands and comforting him. The video with Madison gently touching Gavin was precious and very touching. May God shower many blessings on your family.

Tiffani said...

Oh Happy Day!

Will continue to pray for healing and hope!!

Cindy Heintz said...

Always look forward to your great Updates.....
Praying all your questions are answered and our little man keeps moving forward each and every day :)
Much Love to All