2 Weeks Since The Call

Well, another Thursday night comes to an end. Whenever I am home it's a late one for me because I spend the evening hanging with Riley and then packing for the weekend after she goes to bed. What is exciting is that I know that I only have a few of these late Thursday pack nights left! Tonight I even packed clothes for Nolan. It's going to be so weird to actually be able to put a onesie on him!

Just a quick update so I can get some sleep, plus I have a lot of pictures to share! Nolan had a busy day. This morning he had physical therapy and they actually brought him into the play room! They have him able to easily travel around the unit, which is so fun because now we can bring our stroller up and start walking around. After they did therapy in the playroom they spent some time in a sun room/seating area, which Nolan enjoyed, so I am sure we will spend more time there. After therapy Nolan had his second hair cut! I still haven't even cut Riley's hair. :)

They have started Nolan on bolus feedings and Matt says he seems to be handling it well. So promising! Occupational therapy came in and worked on eating, so we are definitely making progress. Tomorrow is Nolan's first biopsy. He will have it done around 8 am, and it's pretty much a simple procedure. During a biopsy, a small piece of heart muscle is removed for microscopic examination to detect rejection. The biopsy is performed through a vein located either in the right side of your neck or in your groin, using a bioptome, a long, thin tube with a tiny cutting edge. The entire procedure takes about 1/2 hour and will be performed by one of our transplant physicians. The biopsy results are available from 24 to 48 hours after the procedure. If they biopsy indicates rejection is present, the transplant team will immediately treat Nolan by changing his medication regimen. Rejection can recur at any time, and rejection is treatable. So, if there is sign of rejection it does not mean he will lose his heart.

After we find out the results from the biopsy, that is when we should know the timeline for when we will be discharged. Also we will know for sure if Nolan will be doing inpatient rehab or staying with us at the Ronald McDonald House. I am looking forward to next week and being able to actually spend time with Nolan. I will be able to hold him when I want, take walks around the floor, play in the playroom...slowly, but surely, we are getting there!

It's hard to believe that two weeks ago I was waiting to hear the announcement that Nolan's heart had arrived at the hospital. That seems like forever ago. Two weeks ago a brave family selflessly donated their child's heart and saved my son's life; I think about that baby throughout my entire day, every day. All of it is so hard to process, and I am not sure I am ready to. I am just forever grateful.

Tomorrow I will be in Pittsburgh around 6ish - I hope to get a post in...if anything, I will be sure to send some pictures! I hope everyone has a great Friday!

#nhos
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