Best Day Yet

I have to say, today was the best I have seen Nolan since I really can remember. I was trying to pinpoint an actual "time," but I can't remember much at home since all of this started. I think one of the best news of today is that Faith was officially discharged from CHP. They are now considered outpatient and will be living in the Ronald McDonald House for the next 4 weeks. I am so happy for Jamie and Nathan! Their family has been through so much, I can't imagine how they must feel. AND, we are excited to join them SOON!

With that said, there was debate whether or not we should do inpatient rehab for a few weeks, or just be released to the Ronald McDonald House and continue therapies as an outpatient at the hospital. Matt and I were open to either, we just wanted to do what was best for Nolan. They suggested we all go to the Ronald McDonald House because we can continue therapies and get our home life and routine started. Physically, Nolan has been doing amazing! In his crib he rolled from his back to his belly (almost ALL the way). This is HUGE! He is also sitting by himself for a few seconds and continues to get stronger each day. I could see the satisfaction from the physical therapists on how well he did today. They were elated! I think our biggest challenge will be eating. He did well today with speech and OT, actually ate a little bit of pears. Tomorrow I think we are going to try to introduce a bottle. At first we were not going to even introduce bottles, however now I am on the thinking of...who cares if he uses a bottle past the age of 1? The sooner I can get that NG tube out of his nose, the better! So, I look forward to seeing how he does; HOWEVER, my expectations are not high. It will take practice. He is

continuing his bolus feeds and doing much better than last time. They will ease slowly to his goal consumption, and so far, so good.

Our biggest problem...probably one of the reasons why we are still here...the infection. It is still a mystery and when the infectious disease physicians and our transplant physician start talking shop about it, I feel like I am hearing foreign language. After they are done chatting, I have to go to our transplant doctor and have him translate it to me like I am in 4th grade. (and even then, it really doesn't make 100% sense to me) So, I will try to explain the best I can.

We do know there is a gram-positive bacteria present. It is the same growth that presented itself prior to transplant in his broviac. He tested negative for this prior to transplant, so they are not sure how it is showing up again, nevertheless, it is being treated appropriately. There's also a gram-negative bacteria present, and this is the one that remains a mystery. It is slow growing, so they are not sure if it is something from his picc line, and not actually in his blood. With that said, they removed his picc line today and placed a peripheral line in. They will draw labs again in the morning to test his blood from the new line and also sent the picc line to be tested. Tomorrow infectious disease has a weekly meeting for their "mysterious cases" and they are going to discuss Nolan. There they will figure out what this is, how to treat it and for how long. Chances are we will be on the 6 week course of antibiotics via a picc line, which they will place Monday.

Are you lost? I am. And the information above is most likely not even correct, but, this is the best I can do. I was never into science.

Whatever we are doing now is working. Nolan is super happy, laughing, playful, funny...I feel like I have my baby boy back. I can hold him normally, we played on a mat for most of the day, tomorrow we'll hopefully go for a stroller ride...it's all coming together.

Better yet - tomorrow is Friday, and my Valentine will be here!

#nhos
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