Wednesday, February 19, 2014

A Sleepy, Happy Boy

Today was a wonderful change from the chaos and worry of yesterday. Max has had a really wonderful day today that was mostly filled with snoozes.

Falling asleep listening to some music on Dad's iPad.
Today he got the chest tube out that had been put in to fix his lung and his PICC line was removed as well. A PICC line is a peripherally inserted central catheter which is essentially a central line that was inserted into his foot and went all the way up by his heart. He's had that in since the day he was born but it was great to get it out. It's also good because that means that the nurses are administering more and more of his medication through his nose tube which is how we'll give it to him when we take him home. He's starting to have fewer and fewer tubes and wires in him which means we can see more of his cute belly which is, of course, fun for us.

Max's main doctor and the hematologist checked out the ultrasound from last night to review the blood clot in his neck. The swelling has completely gone away and after reviewing the ultrasound, the clot appears to be located in one of three veins in his neck. The clot is not completely blocking the vein so it's letting a little blood flow around it and since it's one of three veins, Max's body has already started to reroute the blood through the other two. Any clot is bad but on the relativity scale of blood clots, this one isn't too bad. The doctors have stopped the blood thinners and have moved over to using baby asprin as a blood thinner for a few days and then they're going to do another ultrasound and reassess the clot and the course of action. If the clot seems to be breaking up/going away, they'll continue with the baby asprin until it's gone. If it doesn't, they'll get more aggressive with blood thinners so it doesn't become a bigger issue. The doctor also said that sometimes a situation like this just needs a little bit of time and Max's body might just work itself out.

During evening rounds, we found out that while we were at lunch, Max had a brief run of ectopic atrial tachycardia (EAT) that caused his heart rate to jump up to 185 bpm and it lasted for about 45 seconds. EAT is very similar to SVT which Max had during the terrible, horrible, no good, very bad day. This time, however, his heart rate didn't get nearly as high as it did before and it worked itself out. The rest of his stats also stayed good during this brief run. He's on a medication to help control this and it was just about time for his next dose when the EAT happened and it hasn't happened since. We weren't super happy to hear about it for the first time nine hours after it happened during evening rounds so we're not really pleased with the nurse we had today.

Overall, it's been a great day for Max. Aside from the minor run of EAT, he's done extremely well today and we're thrilled that everything looks good. When he woke up this evening, Jon and I got to help out with his bath again and he was very alert and interactive. He doesn't need to be sedated as much anymore so we got to play with him for a bit which was super fun.

This is the cutest baby ever.
He's never going to do anything wrong.

We're so glad that he was able to sleep so much today to help him heal but we love that we got to have some fun with him, too. It's so easy to get bogged down in all the medical stuff because it's obviously a big part of our lives, but it's really amazing to have those moments when we just get to be parents and have fun with our baby boy.


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