Terrific Tuesday

Well, I have to say I feel like an amazingly lucky girl. I got to see both of my kids today! And both of them showered me with smiles and love. Does it get any better than that?

Nolan had a great day. He was more animated then I have seen since this all started. The doctors really didn't change too much today. He had a CT scan this morning and everything looked pretty much the same, so they continued to give heparin at a low dose. He has been a little "junky" sounding and producing a pretty large about of mucous, so they did send some lab work. He is still having some agitation, but they think it is because they weaned a large amount of sedation off of him over the weekend and he is not reacting well to that. Balance, balance, balance.

He was up a lot today. We played with the hanging gym, he was actually chewing on Sophie and I was trying to work with him on sucking on a binkie. He still doesn't seem to get the hang of it yet. OT came and we tried a feeding. He was kind of interested, but not really all there yet. We'll practice again tomorrow. During some of this time I noticed him look directly at me and smile. His eyes lit up like, "wait - I know her!" And he showed that amazing smile all day to the nurses and the doctors. It was fantastic! I have been telling everyone here that he truly is this happy, smiley baby boy. You could see that today. I do think he had some vision issues the past few days that may be resolving itself. Seeing him and knowing that he knew me just melts my heart. I would tell him to "kick, kick, kick" his legs (we used to do this during bath time) and he responded. I am so thankful that I got my baby boy back! I do think he still has some deficiency on the right side, but he is moving all extremities...it seems more of a visual issue than anything.

I met with a lot of people from neurology and neuro surgery today because they have been evaluating Nolan's past strokes and current brain bleed. They feel comfortable with him staying on course with the level of heparin he is receiving. Nolan has been synonymous for having PTT (partial thromboplastin time - measures how long it takes for a clot to form in a blood sample) levels all over the place. Tonight his level was on the high end, so hematology gave the OK to up his heparin a little more. Hopefully the levels will come down AND that he responds well, neurologically speaking, on the heparin. In order for Nolan to receive a heart transplant he has to be able to tolerate a HIGH level of anticoagulation medicines. Currently he is not ready. He is still listed, but if a heart were to come tonight, they would deny it. They are hopeful he will be back up on regular doses of heparin by the weekend, should everything neurologically remain steady. This is truly a sticky situation. His brain can't have thin blood because of the bleed on the brain...any further bleeding could result in a stroke. His VAD can't run without thin blood or else it will clot, which in turn puts Nolan at great risk for a stroke. He can't receive a heart without being on the anticoagulation. What needs to happen is he needs to respond well to the slow increase of heparin without any further bleeding on the brain. You know, no stress or anything. I am hopeful and encouraged by today's events that we are on a good road. We just need to get back to a normal anticoagulation level and need a heart ASAP! Everyone here is so ready.

So, that is the latest. Many, many success stories come out from Children's Hospital of Pittsburgh and I have been lucky to hear about them. I am so anxious to become one of those stories, my legs are bouncing up and down just thinking about all of it. I had a wonderful stress relief today, and that was seeing my Riley Roo (and my dad, of course!) They made a day trip out here to see us and I am so thankful. We hung around the hospital, went to the park and my dad got to see Nolan. I don't know what I would do without that girl. She keeps my you know what together and helps me get through everyday. I will be forever grateful to her.

I just got done eating tomato soup and grilled cheese in the cafeteria. Not to shabby. Heading back to see Nolan for a bit, then head to bed. I pray tomorrow and the rest of the week stays the same course.

Hope you all are having a fantastic week.

ONE MORE DAY CLOSER (hopefully not tonight)!

#nhos