There hasn't really been any changes today, except slight lowering of drainage, which is good. Our cardiologist came in today and said that they were going to give Caelen more time to drain and heal. Which is what we wanted. They are lowering his esmolol with a goal of weaning it off overnight. They will instead start a different type of beta blocker that can go they his stomach instead of IV. They have stopped the heparin and are stopping the bivalirudin overnight too. Instead he will be going back on lovenox twice daily injections. That kinda sucks. I know that Caelen needs it, but the thought of the injections again in a now 3 year old give me anxiety.
On the positive side, Caelen walked more today and went for a wagon ride. He's laughed a few times too. The wagon is in our room, so we can use it each day. It takes a team to walk the halls, but it was so amazing to get hin out of his room.
So each day we are making a little bit of progress, and that's fine by me. We still need the effusions to stop, he's down from draining 2 liters a day one week ago to a little over 1 liter per day. It would be better if it was zero, but I know that day will come.
Thanks again for all of the prayers. And thanks to the Millers for lunchtime fun. Baby Macsen looks amazing and the girls had Kelly and I laughing harder than we have in 2 weeks.
Love,
Katye
Prayers that the drainage slows down soon!
ReplyDeleteSlow and steady, he's getting there!! Glad he's laughing, im sure it's music to your ears. Continued prayers--/ the Rhoads
ReplyDeleteSlow and steady, he's getting there!! Glad he's laughing, im sure it's music to your ears. Continued prayers--/ the Rhoads
ReplyDeleteSlow and steady, he's getting there!! Glad he's laughing, im sure it's music to your ears. Continued prayers--/ the Rhoads
ReplyDeleteSo glad to hear good stuff....it is a long road that we can only imagine how hard it has been, you are amazing and Caelen
ReplyDeleteis very lucky to have you. Keep healing and laughing Caelen.
We are all continuing to keep you in our thoughts and prayers
daily. Come home soon little boy!
So glad we were able to actually DO something to make the Gormans time at CHOP a little better. Granted it was just our girls goofing off, as usual. So happy to see pics of Caelen's progress. Still praying and keeping fingers crossed.
ReplyDelete-Aaron Miller & Family