Tuesday, July 12, 2011

Game Plan

Aaron's cardio team relayed their plans late yesterday afternoon. The plan is to start him on sildenafil right after his eye exam on Wednesday. (A prize will go to who can find out the more common name of the drug, you'll be surprised!) This drug will cause problems for his eyes if they are not fully developed so we are all praying for his eyes to be ready for the drug. If not, his retinas will have a high chance of detaching. He will gradually be stepped up to full dose of this drug with his nitric and then once he is on full doses he will gradually be weaned off the nitric. All three cardiologists are going to monitor him weekly and are going to weigh in on his continuous care. We were also told that once Aaron's pulmonary hypertension is resolved his PDA will need to be closed. We are passed the medicinal options so he will have surgery to close it. If we can get Aaron bigger they will be able to do this through the femoral artery if not, they will go through his side in-between 2 ribs, both will require intubation and a respirator. For now we know he has at least 2 surgeries in his future and hope that is all. We are also told that Aaron will have regular appointments with these cardiologist's once he leaves the hospital and that his heart problem may be a long term concern. He now has two machines to measure his pulse ox, one to measure the oxygenation of the blood before the PDA and one to measure it after. We want those numbers to be as close to the same as we can get them. We are told that this is not something they want to play around with, they are adamant that his pulmonary hypertension needs to be resolved immediately.

Aaron broke the kilo mark last night and weighed in at 1020 grams. I know some of this is edema and some is the added pulse ox monitors, but we'll take it and cheer. He was also moved up to 20 mls in his feedings. I am once again able to hold my little guy. While he is on the higher flow, bottle feeding is out of the question so instead of working on eating we just snuggle. He did really well and I held him for about 2 hours. His stats usually stabilize much better while I am holding him, so hopefully we don't have anymore major breaks in kangaroo care. Tomorrow is a big day, his eye exam is really important, we are crossing our fingers and praying his eyes are ready to go.


Cindy Lou said...

Heehee Viagra, isn't it amazing the many different uses some drugs have. Hopefully the day will come when you can laugh about him getting to take this.
I am so very glad there is a game plan. Our little grandson is going to have his heart procedure in August followed by 2 surgeries for his little boy parts. (sorry TMI)
Please let baby Aaron know during some snuggle time how much he is loved and prayed for by people he doesn't know.

FYI said...

You are brave, intelligent and spiritual parents. Good job. He's an amazing little man. We are praying for your family and for your doctors. Sometimes my name doesn't show up, so this us Jacqui Reich, just in case.