Tuesday, December 23, 2008

Update...

Some days are harder than others. There are days I seem to forget the issues we are dealing with and I am able to just enjoy life and move forward -- this is not one of those days. I had a very difficult talk with Gavin's doctor this morning. I'm not going to go into details because it is just to complicated to write out -- not to mention just to painful.


Gavin is doing much better since we started the two antibiotics and one anti fungal. As we thought, he needs blood and he will be transfused this afternoon. His liver numbers are looking a bit better but still not good. His bili is still high and Dr. Raab kinda prepared me for the colors Gavin may start to turn in the future. If Adam and I are just prepared for what he is going to start to look like I think It will be a little bit easier. His liver is really starting to feel the effects of his long term TPN use, which is something that we were aware can happen.


Please say extra prayers for Madsion as well. As she gets older I think all of this is a little bit harder on her. I often wish I could be in two places as once. She is staying with my mom today, giving her a much needed break from Hotel Dupont.

For now we will just wait on cultures but either way, positive or negative, we will go home on IV antibiotics to get Gavin through the next week. I'll be sure to keep you all posted.

12 comments:

Anonymous said...

Karen,Lots of love and passionate prayers for you all.May His presence continue to carry you through. Wondering, waiting, and weeping with you...

Anonymous said...

Hi sweet Gavin, I will say extra prayers for you. Please have your mommy visit this website, its Sams website, he like you and so many others was TPN dependant, there is something new he and and alot of others have been taking its called Omegaven, it replaces the TPN and does not damage the liver, for more information please check out his website www.samoconnor.com, Im sure his parents can you give alot more information on it then I can but I believe it can help. God bless

grey like snuffie said...

praying

Anonymous said...

Praying those antibiotics work fast, for peace and rest for all of you! Thinking of you! Sarah

Anonymous said...

We are keeping you in our prayers...

Nilia

maggiemae and family said...

praying for your sweet family.

Reagan Leigh said...

It breaks my heart to know you are going through all of this...that little Gavin is going through all of this. I just want you to know that I don't miss a day praying for Gavin and your entire family. I know how difficult it is to watch your child suffer day in and day out. I'm still hoping they can get the Omegaven for him...are they still working on that? Sending lots of prayers your way,
Tera

Shari said...

I hear your pain, Karen. I can't even beging to imagine how your feelings and emotions are from day to day. Know I continue to pray and I am really praying you are home for Christmas day. Love to you, sweet lady.

Anonymous said...

Karen. Thinking of you and sending many prayers to the entire family.

Much love to all of you....
Sandra

Darla Klein said...

Sorry to hear Gavin is not doing well. We will be praying for him and for your entire family. May god wrap His loving arms around you and grant you comfort and peace...

www.caringbridge.org/ia/mitomomof9 (Asenath and Zipporrah)

http://www.freewebs.com/growingupmitodisorderinfo/ (New website for Mito... If you wish your caringbridge link to be posted amongst the others on the site, let me know...)

Anonymous said...

I wish I knew the right thing to say. I'm glad you will be home for Christmas (or so it seems?). Lots and lots of prayers coming your way.
kate.

Debbie Heisey said...

Asking the Lord to provide greater grace for you and your family. I know that there is no way that I can begin to understand what you are really going through. I do want to say thank you for sharing some of your struggle with us. Thank you for allowing us the opportunity to lift up your family in prayer, to take the concerns of this life to the doors of heaven. I know that He truly understands and that He will provide even in the most difficult of times. Be blessed and be safe in Him. ~Debbie Heisey