Thursday, April 19, 2012

5th Floor

Today Blaise was able to move out of the PICU and up to the 5th floor at Children's. This is great news for him! However, it makes mom and dad a bit more nervous because instead of having a one on one nurse in charge of just him, he now has one nurse who is in charge of three patients. It will be hard to leave tonight, but we believe he will be in good hands. Plus its good practice for us since we will be totally in charge at home. He did better throughout the day on his feeds, and usually drank 30-40 cc of the 60 he is supposed to take. The rest he gets through his feeding tube. He was able to get several of his lines removed today, so it's easier to pick him up and snuggle now. This is our favorite thing! Blaise has also started getitng his blood thinner Lovonox shots twice a day. Mom and Dad will soon be learning how to give him these, as we will be giving him two a day until his next surgery to help keep the shunt in his heart from clotting. He absolutely hates these and screams each time. We are not looking forward to doing this. The nurses wil also probably start teaching us how to replace his feeding tube just in case he will need one at home.

Speaking of home, it sounds like we wil be here at least through the end of the month. He has scheduled EKG's every other day until then. The doctors really want to make sure his coronary arteries are somewhat stable before sending him one his way, as there is no "fix" to help with this structure of his heart.

A few people have been asking- Mike and I are staying at the Rainbow House which has been really great. It's only about 5 blocks from the hospital, and we really only sleep there at night. We have had some visitors, but unfortunately we have made the decision on recommedation from the doctors that Blaise does not meet anyone for risk of sickness. Mike and I are happy to come out and say hi to anyone and show lots of pictures, though.

Depending on how tomorrow goes, I'll plan on trying to update with a description of Blaise's heart and what the future holds.  As always, we are so grateful for God giving us this wonderful, adorable, perfect little boy. He has answered prayers and continues to show us guidance.

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