Biopsy Day #3

It was an early start for all of us. I got up around 5:30 am, got the coffee on and prepared us for the day. We all were out the door by 6:20 am. We got registered and check-in at same day surgery and went back to prep just about 7 am. Luckily I got to rock him to sleep before they took him back, which was nice because he didn't wake up at all going into the OR. He was sedated and intubated for the procedure. It went pretty quick, about an hour or so, and we were told the procedure went well. We will know the results of the biopsy tomorrow, however, they told us that the pressure of his new heart looks better. So, for preliminary news, that is good!

While he was in recovery, they came out and told us that Nolan needed his mom's touch. In the recovery room they have two zones. First zone is where they go immediately after surgery. It is just a large room with a lot of bays where there's a nurse observing the patient. Nolan was NOT happy. They changed his picc line dressing and he got ANGRY. So, once I got there, I got him calmed down. From there we went to zone two, which is where patients go until they are discharged. Slowly Nolan came out of sedation, we watched some cartoons, gave him his meds and started his feeds. While we were there, our transplant coordinator, Alice, came by to visit and see how things were going. We did find out that his blood cultures from the weekend came back negative, so that is good news. Alice let us know by the end of the week we should have our timeline as to when we will be heading back east. She guesses in about two weeks or so.

Nolan did great the rest of the day. So far, no throw ups all day! I have to admit that this has been a pretty emotional week for me. I am not sure if it is just reality of what is going on, being stuck at the Ronald McDonald House, missing Riley...missing life? All the above? In any case, I have been struggling a bit. I am thankful because one of my best friends, Alisa, stopped by to drop off a Mama-roo for us to use and she knew I was in need of some time outside the Ronald McDonald House. It was a beautiful day, so Alisa and I got some latte's and went for a walk. I definitely needed it and that small amount of time gave me time to breathe and it felt like a huge weight was lifted off my shoulders. We are going to be OK. Life will be OK and will be normal again sooner than I think. This has been the hardest thing I have ever done...ever. I try to keep everything in perspective, but sometimes...it is so hard! You tend to have pitty parties, ask the why's...but, like some have told me, I have to remember what is important. He is here. And for that, I am thankful. I just pray for a great result from today's procedure and hear the words...Nolan is ready to go home SOON.

Tomorrow morning I am heading back to Muncy for a few days. Matt will spend his first day/night alone with Nolan and his mom will come Thursday and leave Friday. This weekend I think my parents and Riley are going to come to Pittsburgh, so I look forward to spending the weekend with BOTH of our kids!

Nolan has a busy week coming up. Tomorrow he has an evaluation with speech therapy. Thursday he has lab work, echocardiogram and a clinic visit, along with OT and PT later in the afternoon. Alice called us this evening to let us know that we could stop his medication, diuril. One more med off the list! This is a diuretic; he is also on lasix (which is also a diuretic), and will probably be on that for some time. Alice also let us know that Nolan will be having another GI consult to revisit his belly issues once more before we go home and devise a goal with his feeds. The hope is to increase his feeds during the day and decrease his continuous feeds at night. Ultimate goal is for him to actually eat. All of this will come in time.

So, that was our day. I hope to bring great news tomorrow about our biopsy!

#nhos