Today was an up and down day. To start the day, I finished restoring Frankie's 1971 AMF Pedal Tractor. So now he has a reason to heal up quickly. We came in around 2 today so we could meet with a medicaid specialist and apply for it. I hope we qualify for it because even though insurance companies can not deny coverage for pre-exsisting conditions anymore, to get coverage is ridiculously expensive. A plan at Alex's work for her and the boy is $500 plus a month or we can get an individual plan on him. An individual plan could have a rate increase up to 500% because of his condition. This means an average plan of $100-150 a month could sky rocket to $500-750 a month just for him. But we may qualify for SSI Disability on him which would offset that. For the first part of the day Frankie was doing great. As usual around 4:30-5:00, he is wide awake. Total happy and content. They have increased his feeding to 2 ccs an hour, steady feed. At a few minutes before 7:00, Alex went to go pump and Frankie was getting a little upset. No biggy, Alex went to go pump and I went to calm the little guy down. Well he went nuts. He screamed and thrashed his arms and legs around for 45 minutes. We took turns including combinations of me, the nurse, and finally Alex holding him trying to calm him down. Nothing worked. We gave him Tylenol at first. Then all of a sudden he stopped completely. He was totally exhausted. By that time, they had the 2 nurses, Alex and I, the surgeon (he kinda oversees everything on my son and runs the show) and a neonatologist were in the room. Alex was in tears. That kind of crying was not "I'm hungry" or "hold me", it was "I am hurting something serious", but unfortunately we don't know what. It may have started as a small thing and then climbed to a panic for air. Even though he was done fussing, they gave him Morphine because they knew he would be hurting just from that fit alone. It has been 2 and 1/2 hours since that happened. He has laid quietly since then, but his breaths have become shallow and increase to 90 plus per minute. We know they boy is strong. The one nurse explained that sometimes the babies need a break. They work so hard and do so well and then just wear themselves out. Hopefully this is just him worn out and we will get moving forward again. This is tough for me and Alex, but that's the name of the game. We knew this would be a struggle and we had the choice. We are happy with our choice and know its all worth it every time that little guy makes our heart melt. On the lighter side of things, while I am curious what Frankie will weigh when he gets his walking papers, I am more curious what I will weigh then. Staying up late means an extra meal and then snacks in between and then just maxin' and relaxing. I came in at 163 lb any guesses on what I'll weigh on the way out?
P.S. Don't you love Frankie's angry face?
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