I knew Dr. Haw had not done a valve replacement in a baby since 2002, but did not realize that Lincokn is Devos' first and only valve replacement surgery in an infant. So, we are all in uncharted territory, trying to ensure that our baby boy gets the best treatment, care, and home education he/we need. Cardiology and Hematology will both be educating us on how to care for him at home, and we will be having frequent doctor appointments to manage his levels/heart. We are trying to figure out if we can get a co-ag machine at home to test his levels weekly instead of having to have his blood drawn weekly, but they are not sure if it will work on an infant (since he is their first case). They are all looking into the best options for his care at home.
Right now, he is starting to wake up, but the process could take up to eight hours. It is hard to watch because he looks like he is in so much pain. He had his chest tubes taken out this morning, but his breathing tube will stay in as long as he stays sleepy. Everything looks stable for now, but until he is breathing on his own and really comes to, we don't really know how he is truly doing. Thanks again for all of your prayers.
The new family picture is wonderful...gives great hope for all of you being home and together. I continue to be amazed at your strength, the journey your family is on can only be unreal at times. I will continue to have you guys in my prayers...may your weekend be calm and healthy. Margo
ReplyDelete