Growing Pains

I ended up not leaving Nolan's room last night until 10:45 pm. He got increasingly angry through the evening so they gave him his sedation earlier and it seemed to help. I got back to the Ronald McDonald house and went to bed, only to get a call around 12:30 am saying that he was inconsolable and if I could come down to see if mommy would help. When I got there I could see they were preparing to take him somewhere. They decided to get a CT scan done just in case the changes in his behavior were due to something neurologically. They also started him on an IV drip of precedex, another stronger form of sedation. It is important to keep him calm because when he gets angry his heart rate increases, which makes your blood flow faster and this could be dangerous should bleeding on the brain start again.

They returned from the CT and he seemed a little calmer. Radiology called and said the CT looked the same, no changes. WHEW! Why all the agitation? The doctors think it could be just the weaning process of sedation, scattered sleeping patterns and, what I thought all day, TEETHING! I felt and he is cutting teeth both on the top and bottom. I feel horrible for him. You can tell he is so uncomfortable because he is rubbing his mouth and the side of his face. Just because they are in the hospital doesn't mean they stop growing! He does look longer, he has been gaining weight and he is definitely growing more hair. So, they ordered him some Orijel and it seemed to help him through the day...along with the precedex.

Today he got some physical therapy. He seems to be doing well on the right side and also visually improving. Occupational therapy also stopped by and we worked on some feeding. They increased his heparin and will continue to do so while closely monitoring any signs of neurological distress. If we stay on course he could be up to the anticoagulation standards that meets the recommendations for a heart transplant. Again, he is still "listed," but they probably would not accept a heart should it come tonight. If all goes well, we could be good to go by the weekend! EVERYONE is ready. The cardiothoracic surgeon, Dr. Peter Wearden, said to me, "don't worry, it will come...it always does." He is an amazing surgeon, I have learned. He is actually currently in a leadership role developing a VAD for children, ages 0 - 2 years. Read this article. It's amazing.

So, I am hoping tomorrow I tell you pretty much the same. Increasing heparin, no neurological issues, continued weaning of sedation (precedex) and on our way to getting THE CALL. I have moments when I think to myself...I can't believe this is happening. I find it amazing how we naturally adapt to life situations and you find ways to cope and get through tragic situations. There's nothing more we can do but LIVE and be there for our children. That is my number one job, to protect them. We are doing everything we can for our baby boy - and I know we are in the right place.

WELL - we are sliding into another weekend. Excited to see Matt and my parents are coming, too! I also got a call from Collin, Matt's brother, that he might be making an appearance as well. Hopefully Nolan is having a good weekend so we can all enjoy him and maybe some time away from the hospital.

Back to see Nolan and HOPEFULLY getting some sleep tonight. Of course, I would stay up all night with my Nono if he needed me. I am HAPPY to do that!

ONE MORE DAY CLOSER!

#nhos