Ephesians 3:20 "Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us"


Tuesday, April 03, 2007

Transplant has Been Put on Hold


Yes, you read that right, his transplant has been put on hold!!! Why??? They are many conflicting opinions that we are trying to go through right now to try to understand what is going on. We found out on Friday that we have to wait at least another 3 months before Caleb could go to Duke. The docs at Duke say they have come across some indiscrepencies with Caleb's blood and they are now wondering if he may have a Thymus. There is a certain test they can do at Duke to see if any of Caleb's T-cells have been marked by the Thymus. The docs at Duke say they see some T-cells that look like they have been marked by the Thymus.

Unfortunately, previous tests have indicated that these type of T-cells do not react to viruses when exposed to them in the lab. They are not sure what is causing the T-cells to be marked and are wondering now if he does have a Thymus. One hypothesis is if he has a condition called sarcoidosis that is attacking his Thymus. The docs here don't think it is sarcoidosis and that Caleb needs to get to Duke. If Caleb has a Thymus, it is our understanding, that he is not a candidate for the Thymus transplant. They have started Caleb on some steroids to see if they can 'trick' his Thymus so it thinks it is fighting an infection and then they will re-test his T-cells. Who knows what the time frame is for the steroids and if they will work.

It is very frustrating as the docs here are saying it is over their heads, but the docs at Duke aren't ready for him yet. So where do we go from here....I wish I had an answer. Brian, Dr. McPeak (one of Caleb's diagnostic docs here who is fabulous) and I this weekend decided to request a group meeting with all docs including Duke docs to see where we go from here. Brian and I have also asked if we can take Caleb home for those three months as long as it doesn't hurt his possibility of getting him on the list for transplant if needed. We should find out an answer regarding going home on Monday when we meet with everyone.

We will have to clean the house thoroughly, replace some carpeting, get all other carpets professionally cleaned, as well as set up a home nurse to help me get acquainted with all the IV's and what not when we get home. Caleb will have to remain in isolation. They have repeated some lab work and they hope that this will be back before the meeting on Monday so we can see what direction we are headed in, however, it also may be too early to tell anything regarding the steroids. As you can see this has a very hard couple of days. We have sat here for two months thinking he was going to get a transplant and know we are in a holding pattern. Hopefully the steroids will work (however some docs don't think they will) and Caleb won't need anything else but that to get his immune system sparked. They once again have said that Caleb is very complicated and probably won't see a case like this again in their lifetime....we just wish we could get some answers and how we could help Caleb and keep him healthy. We would like to if at all possible get Caleb home and be a family again and have as close to a normal life as we can. Please continue to keep him in your prayers.




Oh they have also placed an NG tube as Caleb has had some difficulty eating we are unsure if it is due to an oral oversion due to all the meds he is on, because he has CHARGE (some CHARGErs have off and on eating issues), or becuase he is sick due to the Cyclosporine. The craniofacial group does not think it is safe for Caleb to eat right now, so gets his meds through his NG tube and his nutrition he gets from his TPN and Lipids intravenously.He also had a couple days break from his mouthpiece (NAM) as he was having some sinus issues.


Also, as promised, I have included pics of Caleb's development. I have also added pictures on the his picture website, go to the link above on the left. He's doing great. We love and miss everyone soooooooooo much!!!!

5 comments:

Crystal and Eva said...

He is so cute and I love seeing pictures of him. My thoughts and prayers are with you all. I am so sorry and so sad to hear the news you recieved. I hope if anything you can all go home for awhile and enjoy some true family time.
Hugs,
Crystal and Eva

skeybunny said...

Sarah, Brian, and Caleb,

My thoughts are with you during this time. It is very hard to deal with or make plans when there is not a consensus between the doctors as to what is going on. Hopefully, they will allow you to bring Caleb home--he will blossom developmentally there, while he waits for Duke to make up their mind.

From what I know about sarcoidosis (which I know is not anywhere near as extensive as Caleb's Drs), Caleb doesn't seem to fit that deomographic at all. Have they tested him for any other auto-immune disorders? There is a test for sarcoid (called the Kviem test), where they inject proteins from someone who has sarcoidosis and look for a reaction. I imagine that with Caleb's immune system that his Drs don't want to do this test.

I hope that the Drs at Duke will come around and take him on as soon as possible.

Hugs,
Sarah, Jeremy, and Evan (ChaRGE)

Maxwell and Amy said...

Oh Sarah and Brian, I am so sorry. How terribly frustrating. The waiting game can really get to you...and now to think of yet another three months. PLEASE keep us posted. I check in every day on lil' Caleb and was getting worried when there wasn't anything new posted.

You will be in my thoughts and prayers...
Amy and Max

Aunt Jen said...

I am not sure where to begin. I am so sorry for all this frustration, but know just how much we love you all. We pray for Caleb everyday to stay safe until the Drs can do what they need to do to get him healthy. If you do have to wait to go to Duke I am so hopeful that you will be able to go home and all be together. That would be quite a blessing in itself. God Bless you all. We love you so much an pray for you everyday!!

Love, Aunt Jen, Haleigh and Andy

Aunt Jen said...
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