Thursday, June 27, 2013

Busiest. June. Ever.

**WARNING! I have posted pictures of actual hearts, so if you're squeamish, you might want to pass on this post.**

Last month Christopher was hospitalized with gastroenteritis for about 5 days, went home, and two days later got readmitted for pneumonia. He came home after four days, then two or three days later we were right back in the ER. This time his only symptom was that he was needing a lot of oxygen. They ran all of the tests they could think of, and discovered during an echocardiogram that a few of his valves that had been stenotic (much more narrow than normal--he was born this way) had suddenly opened wide and were leaking like crazy. These leaks were causing the blood in his heart to just stay in his heart and not get to his body or to the heart muscle itself, causing massive heart failure. The transplant team got right on it, and within 48 hours he was listed for a new heart. It usually takes about a week to get someone listed for transplant, but Christopher was so sick they did it as quickly as possible. During that 48 hours, Matt and I met with the transplant coordinator, a finance coordinator, a pharmacist, the cardiothoracic surgeon, a social worker, a nutritionist, and several nurse practicioners. We signed all kinds of forms and were given what has to be about 300 pages of information.  Then the waiting began. We waited for the first week in the ICU while they sorted out his meds and feeding schedule. This was our bed (Matt and I took turns staying at the hospital):
 Christopher stabilized on the IV meds, so we got to move upstairs to the third floor to wait some more. While up there, we got him on a good schedule with music therapy, occupational and physical therapy, and child life with lots to keep him busy. We even got to go for rides in a wagon, which he LOVED! Here he is being a good boy and wearing his mask for our walk. He kept saying "Weee!"
 Here he is playing in his exersaucer. It was really nice to get him out of that bed!
Here he is playing on a mat of the floor.
The child life specialist brings new toys and activities for him to do each time she comes. This time she put shaving cream and paint in a bucket and put some toys in there. He was really unsure at first, but he got into it and enjoyed making a mess.
While he was making messes in the hospital, the girls were busy at home enjoying their summer. I was home with them for a few days when they each got a package in the mail from my sister, Heidi. That was one of the most thoughtful gifts we have received. They squealed as they opened their packages and saw candy, toys, games, and even seeds to plant flowers that are said to attract fairies! Shannon is SURE she is going to catch a fairy in her room now. Here they girls are making cookies and donuts out of play dough. It was really fun!
Then last weekend I was at the hospital with Chris when he suddenly spiked a fever of 104. His heart rate went into the 190s and stayed there for about 6 hours. The nurse drew lots of blood for cultures and tests, and eventually we found out that he had developed a staph infection and C-Diff, a gut infection. These are both pretty common infections to get in a hospital, but they made it so that we wouldn't be able to accept a heart while he was still symptomatic. He was given some heavy antibiotics and by Sunday afternoon he was completely symptom-free again. By Monday his cultures were coming back clean again, so we were back in business to get a heart. I was home Tuesday night when Matt called me around 10:00 to tell me that we got a heart! What a shock! I can't believe this all happened within about 3 weeks. I went to the hospital and the girls went to their Aunt Kate's house. The first thing Matt and I did when we were alone together was get on our knees and say a prayer of gratitude. We I spent a completely sleepless night, then the following morning they took our baby boy to surgery. He went in at about 10:30, and we waited some more. It was easily the longest, most stressful day of my life. We got a few updates just saying that the heart was on the way and that they were cleaning out scar tissue in Christopher's chest. Finally, at about 7:00 pm we got the call we had been waiting for. His new heart was in and it was beating on its own. The transplant team came about an hour later to tell us that he looked amazing and that we could go see him in about 1/2 hour. They all looked as tired as we felt. What a great blessing to have such a team working so hard for our boy! We absolutely love them. One of these days I'll get a picture of them with Chris.
They took my camera into the operating room and got some pictures for me. Here is Christopher's old heart, ready to be "ex-planted."
All the tubes, of course, are hooking him up to the bypass machine.
I like that this picture shows you how small things are. The pictures above could be an adult, but this one shows that it is very obviously a little baby heart.
Here is the beautiful new heart. Soon we will be writing a letter to the donor family, but I have no idea what to say. "Thank you" just doesn't cut it. They allowed a surgeon to remove their child's still-beating heart so that our boy could live. It makes me cry every time I think about it, and all I can do is pray that they know how much this gift means to us.
Another view of the new heart.
 Finally, here is my PINK boy! He looks SO GOOD! His lips are red!
See the blue number near the bottom of the screen? His oxygen saturation is 97%!!! Amazing!
 Perfectly pink toes! 
 What an absolutely amazing thing to have been a part of. God still works miracles! Thank you all so much for your thoughts, prayers, food, gifts, and love. We really, really appreciate it!