Look at my sweet son... sleeping calmly! We are now 24 hours post-op and Caleb's new heart is beating stronger than his old heart ever did. This new heart is the most beautiful gift from God. Yesterday when the surgeon took out his old heart and put the new one in his chest, it immediately started beating without even having to be shocked. And it was beating vigorously! To think of how good he is going to feel in the next few days as he gets to fully wake up and start to feel like himself. I sit here looking at him and I just grin this goofy grin all day long. Caleb is a miracle.
I look at the monitors and can barely believe the numbers I see, numbers we have never seen before. The surgery could not have gone better and now every doctor that looks at him says, "He's just doing great." GREAT. Doctors never say that to us!! When we met with the surgeon immediately after surgery, when we sat down in that little room, I just cried and laughed as Dr. Rhodefeld went point by point, describing each aspect of the surgery as being perfectly smooth. It was very different than other meetings with doctors that we've had in those little rooms, to say the least. The last thing the surgeon said as we started to stand up and go back to give the news to our parents was, "You have a completely new little boy on your hands." I can't imagine hearing more beautiful words.
Today is mostly a day of resting and recovering for Caleb (and for us). He is still on pain medicine that makes him groggy so he mostly sleeps. He wakes up for little periods of time, usually wanting a drink, and he'll stay awake for just a few minutes before peacefully dozing back off. He is already totally off of oxygen support and breathing peacefully on his own with oxygen sats in the upper 90's. I have been amazed at how calmly he has accepted this room and these new doctors and nurses in the ICU. I fully expected him to wake up confused and distressed at his new surroundings and all the tubes... not at all. He has been calm and polite, as usual, waving to people at the door who come by to see him and being totally fine with us going out of his room when we need to talk to someone or get some food. He is so secure and safe here! And it is another example of the grace of God that Caleb is so accepting of the hospital environment and staff. Thank you God for giving my son a greater sense of peace than even I can provide him as his mommy.
Now that heart problems are mostly in our rearview mirror (stop for a minute and think about how crazy THAT is!), we are starting an entirely new journey as we learn about his immune system and what it requires to keep his body from rejecting his new heart. Today he has started a 5-day course of medicine that is one of the "big guns" of immune suppression. This medicine makes his white blood count (the cells that fight off illness and infection) go down to almost zero so that his body is not able to identify his new heart as "foreign". As that treatment is going, the doctors will gradually introduce his new oral medications that also suppress his immune system. Caleb will have a biopsy of his new heart in the next week or two to determine how successful these medications are being. He will be on immuno-suppressants for the rest of his life, and that will mean some lifestyle changes. We have a lot to learn! We finished one marathon and now we are starting a brand new one that we know very little about. But God has prepared us for this and we are taking each step with strength and joy! What a gift we've been given! What a crazy life we have!
A couple quick points of interest:
1) We can't talk on cell phones in the ICU, but we have our laptops for email and facebook. If you call us, just know you won't be able to get a hold of us and we'll have to call you back at some point.
2) We don't know anything about where his donor heart came from. We aren't allowed to know any details at all. We just pray for that family all the time, so grateful for their gift.
3) We should be in the ICU for several days before we are back up to the good old Heart Center. Projected amount of time we will be in the hospital is about 2 weeks if all goes well. Then Caleb will be discharged to stay with us at our apartment at the Ronald McDonald House for another couple weeks before we can go home. We should go home just in time to get settled before Lucy is born!
4) Yes, I am taking care of myself. While Caleb was still on sedation meds, I went to the RMH and slept for 10 hours last night! I am taking advantage of this time to sit a lot.
5) Jonah is doing great, he's staying at Grandma Joyce's and will get to see Caleb once we get discharged to the RMH in a couple weeks.
6) Our biggest prayer request now is that Caleb's body accepts his new heart and that there will be no signs of rejection. Yesterday they actually discovered he has developed another antibody in just the last few days that the doctors did not know about until after the transplant. Fortunately, it is a very low level and it is not an antibody typically associated with rejection. But they had to start what is called IVIG treatment to hopefully keep this antibody from causing problems. They will check again in a week to see if that immediately cleared it up. These stupid antibodies! I am praying boldly that God would take this out of Caleb's body and we won't hear about antibodies anymore! For now, the team is not really concerned but we won't really know if it's a concern until next week.
We can't thank you enough for all the love we have felt and the outpouring of support in the last day. We have felt your care like a giant hug to us here in the hospital and we want you to know that we often thank God for all the people who care about our family. I will try to update once a day or so, and post pictures too!