One Week Since Transplant

Four months ago at this time Matt and I were sitting at Hershey Medical Center waiting to see our son, having no idea what was going on. I can't believe everything that has happened since, how much we have learned, the people we have met, the kindness we have endured, the wonderful doctors and nurses who have saved him and how much more we have to go. It is exciting that Nolan received the gift of life, but we are still in a battle. Nolan has had a pretty tough couple of days dealing with agitation, constipation, swelling and draining issues. Before I move forward, I do want to say that he is OK! His heart is beautiful and his other major organs are fine. It is the balancing act of medications, feeds and reactions to all of this that has caused some problems.

Yesterday was a busy day. Long story short, we noticed throughout the day that Nolan was retaining fluid and becoming more agitated. Earlier in the day they stopped feeds because he seemed sensitive to touch around his belly, and an X-ray showed a lot of air and build up. Towards 7 pm an X-ray showed some fluid around the left area of his chest. The director of the CICU, Dr. Munoz, decided it would be best to drain this area of the chest (which I am so thankful for him!); it was good that we did because right away 110 cc of fluid came out. They did not think they would have to do the right side, but decided to and got about 60 cc of fluid. He looked so much better after! It turns out that there was an issue with his broviac that was placed during transplant; it displaced within the past day or so, probably from removing his initial draining tube, which was causing medicines to go into the empty spaces. We are glad this was quickly found. Around 9 pm last night we went down to interventional radiology where they removed the broviac and placed a picc line.

I stayed with Nolan in his room over night. He was pretty agitated through all night because he got off of his scheduled sedation medications, and he received a few doses of strong sedation for the chest tub procedure and the picc placement. He probably only slept about 1 full hour last night. By morning, he physically looked so much better, and thankfully he rested peacefully most of the day. As the day went on his agitation became less. I think tomorrow will be a little bit better and hopefully we are back on the recovery path. I am thankful for our wonderful nurse yesterday, Jim and Dr. Munoz for acting so quickly once they realized what the problem was. There are people in this unit that are good at what they do!

Today was better than the last. He slept for most of it, and we were all OK with that! He really did not sleep for about 2 days, so he needs it. His incisions look great, the draining is subsiding and his feeds are back on. Out of no where he had a large amount of draining on the left side, so they are testing some of that fluid. More on that tomorrow. I look over at Nolan and he looks so comfortable. It is really the first time since surgery, so I feel at ease. The past couple days have been stressful. I never feared for his life, however it's never fun to see your child in pain.

I think we might be out of the CICU tomorrow and up to join Faith and Cohen on the 8th floor. I have another amazing heart baby that really needs some prayers. His name is Oliver. He has been here since the day he was born and has some wonderful parents. Oliver has some battles ahead of him, which I think he can conquer, but more positive thoughts and prayers for him can never hurt!

I am going to hang out a bit longer with Nolan and then make my way over to the Ronald McDonald House for some good sleep. I hope everyone is having a great night.

Before I end, a HUGE shout out to our friends in Bloomsburg, Millville and Danville for putting together tomorrow's fundraiser for Nolan's Fund. You all are so amazing. Matt and I are so lucky to have so many great friends who are there for us when we are going through tough times. You all know we would do the same for you. We love you guys! Matt, my mom and dad will be there! For those who are looking for something to do tomorrow, head to Danville's Frosty Valley County Club for the Icicle Classic/Polar Plunge/Soiree. I PROMISE you, it will be an event you won't forget. All of our friends know how to make some great memories :)

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On 1/23/14 your little soul joined the heavens; on 1/24/14 you gave us the ultimate gift. You have changed our lives forever and thank you isn't even enough. We celebrate and think of you every day!