It is so hard to know what to say right now. This has been so much harder than I could have ever imagined. They warned us about all the swelling, the incision, the lines, basically everything but there is just no way to prepare your heart for seeing your child this way. I am the mom who cries when Lincoln gets routine shots at the doctor so you can imagine how I feel seeing him go through this. I know all you moms reading this can relate!
Today Lincoln did better than we expected. Aside from his transfusion he really didn't have any major set backs. His breathing today is wonderful! Last night he was getting so upset that he would hold his breath for long periods of time. They were worried about his lungs but his x-ray came back perfect. After he got his increased dose of morphine he basically chugged three bottles in no time at all and passed out. It was such a relief to see him sleeping peacefully without moaning and whimpering. His swelling has increased today and they tell us this is just the beginning. He has not been able to open his left eye at all today but at times will open his right. The first time he saw us he just really started crying. The look on his face was like "Why aren't you holding me people.. . I'm crying here!" It is hard to not pick him but I understand why they want us to wait. He has a drain in the left side of his head and they do not want us to accidentally pull that out because it would be very painful to put back in. His temperature has stayed right around 100 today which is better than yesterday. The nurse reassures us this is typical. Of course I missed when he looked at Logan and gave him a smile...I didn't believe him but he has witnesses to confirm. Lucky dad! I don't know if any of you saw my video I put up of him talking in his own language but we got him to say a couple of his unique words! We started saying "gottagottagotta dekadekadeka" and with the most serious look on his face he just responded "gotta gotta." It is amazing to hear his little voice again!
So all of this has just really put life in perspective. I think when you have a baby you want them to do all the things you never had the chance or guts to do. You don't want them to have any regrets in life. You have all of these ideas in your head of the person they should turn out to be. The truth is, I don't care who Lincoln wants to be. Obviously, I want him to have a big heart and good morals but I am talking about the way he chooses to live his life. I am just so thrilled that has a LIFE to get to live after all of this. I don't care if he wants to play jazz flute solos at half time during the high school football games. I don't really care if he is uninterested in any of the things Logan and I enjoy and wants to talk about knitting all day. I will support him because I love him unconditionally. There is no way that he will go through life and not have regrets. He is going to make mistakes and I hope he learns from them instead of dwells on them. The truth is that I am sitting in a hospital full of crying worried parents whose children have much more severe problems than Lincoln. Parents who just want their kids to make it through whatever they are facing and get the CHANCE to make mistakes. I will never take good health for granted again. We all have something we are good at and passionate about. I can't wait to find out what Lincoln's passions will be. I am excited for him to "turn the corner" and start being himself again.
The plan for the next day is to keep him as comfortable as we can while he continues to swell. We are hoping that he will stop losing as much blood and get to take that drain out so we can hold him! I think as soon as he gets that drain out and can open both eyes again we get to leave the PCCU. This means we will actually get a bed to sleep on in his room, hooray! Fingers crossed tonight goes as smooth as today has.