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"

Thursday, April 19, 2007

What an Emotional Rollercoaster...

Wow, it has been a crazy and nervewracking week to say the least.

Monday, the immunology docs came into our room and indicated that Dr. Markert and others (NIH-National Institute of Health and a board at her hospital) have decided to go ahead with the Thymus Tissue transplant for Caleb. Again, they have never seen a case present in this fashion, however, they are optimistic that this transplant will work for him. There are other transplants that have been discussed, bone marrow and cord blood, but the drawback to those two options is that if either of those are done first they could never go back and do a Thymus transplant if needed. So Dr. Markert and her team have decided to go ahead and try the Thymus Transplant. The one stipulation given to us on Monday was that Caleb had to get a detailed Echocardiogram done along with an analysis at the Cath Lab. This analysis would decide which surgery comes first transplant or open heart.

Which brings us to the Echo and Cath Lab. Caleb went down to the Cath Lab yesterday morning to have an analysis done. He went down at 7 am and didn't go in until 8:45 am. They did a very detailed Echo and Cath which approximately took around five hours. We were then taken back to talk to the doctors to get the results. They indicated that the membrane that was found in the previous Echo is not posing any problems and that the smaller of the two ASD's (holes) closed. However, he still does have one significantly large ASD that is causing pulmonary hypertension. They have concluded that this ASD is the sole cause of the pulmonary hypertension. In addition, there has been no lung damaged caused due to the hypertension. The docs then had to discuss in their meeting, with all of surgeons from their practice, what they would feel comfortable with as far as treatment and surgical options. The scary part....when they tried to extabate (pull the breathing tube/ventilator out that is placed during surgery to help him breathe) his oxygen levels dropped and he turned blue twice. After those two extabation scares they decided to leave Caleb intibated and move him to the Cardiac ICU. A couple hours after Caleb was in the ICU they decided to try to pull the breathing tube and it went well. He was on oxygen for awhile but they removed that too while we had to leave the ICU during the change of the nurses. He came back up to the floor (his room) this morning. He is still wheezing so he is going to get a breathing treatment and is slightly dehydrated so he is getting some extra fluid.

The results are in as far as the cardiology meeting. They have decided they think Caleb would benefit from open heart surgery to fix his ASD early. As they cannot fix ASD's in the Cath lab at a young age. They think that while they are in repairing the ASD they will trim the membrane so it may not pose any problems down the road. Even though this is open heart it is better that he get his Thymus Tissue Transplant first then the open heart. That way any immune system function that may form, before the open heart, is better than none.

So is there a date for Duke?????? YES we are TENTATIVELY going on the 30th of April. YES that is right in about a week and a half!!!!!!!

So there are all the updates. Our little guy kept us and his wonderful doctors on our toes. We are glad he is back in his room and hopefully we can get his wheezing to go away and get him more hydrated.

God Bless.


Maxwell and Amy said...

Holy moly, he is absolutely keeping you on your toes! You are in my thoughts and prayers! Wish I was closer and could do something more. I know this is a very difficult and scary time.

Anonymous said...

Gram Byrum

As Dr. Beerman said after the cath, "You can't keep a good man down." Caleb is an amazing little boy. He is a determined soldier with two committed parents at his side. The love is so obvious and so heart warming. Now, on to Duke and the next step to a total recovery. God bless you all.

Chris said...

That is great news for all of you - yea!!!!

skeybunny said...

We wish you all the best for the thymus surgery (so soon!). Evan had problems with his airway being swollen and needing breathing Tx after being intubated too. I hope that clears up soon.

Sarah, Jeremy, and Evan

CorrieYoung said...

Wow what a week! At least now you have a plan! I know extubations are so hard w/CHARGErs. Tate always is so tricky after his and Peyton is too. Our boys have been re-intubated so many times it's not funny. Now you know for future huh?

Poor guy, I hope he gets feeling better SOON!!

Love from MO,
Corrie Young

ellen said...


Anonymous said...

What a determined little trooper Caleb is! Especially with 2 wonderful parents at his side, he senses and thrives from your determination and hope. I wish all the best for Caleb and the Thymus Sx at Duke. My prayers continue to be with you.


Aunt Jen said...

God Bless you all!! A plan...what great news!! We love you all so much!!Give Caleb big kisses and tell him we love him and are so amazed by his strength and determination!! What a boy...must be because he comes from such amazing, strong, patient, and loving parents!! We love you!! We miss you, but lets get this going!! So glad there is a date, tentative or not!!

Aunt Jen, Uncle Andy and Haleigh

Crystal and Eva said...

You are all in my thoughts and prayer and I Will be thinking about you all in the weeks ahead.
Crystal and Eva