Well, here we are, back into the comforts of the 8th floor; the cardiac acute care floor. As we left the CICU everyone said their good-byes and told us not to come back, only if it's for a friendly visit. We were also greeted with open arms back on the 8th floor, everyone excited to see Nolan without his VAD. Nolan has done a 180 since about 36 hours ago. He still has some agitation, but that is to be expected having two drains and soreness from his surgery. His vitals looked good through the day, and even more steady now. Also, his EKG was better today and his echo continues to look great. He is still on full feeds and tolerating it well, so you can say we had a good day! I hope to talk to OT on Monday and see if we can practice bottle feeding, and I am sure we'll start food again. I pray we stay on this path towards recovery.
So, where do we go from here? Nolan will have a lot of heart biopsies through his life to make sure that his body isn't rejecting his new heart. His first biopsy is scheduled for February 7. I am not sure of the schedule after that, but once we are back home he will receive a biopsy quarterly. I think after three years it goes down to twice a year. Then after 5 years it goes to once a year. If there is rejection sited, I believe they adjust medications, and we may have to get another once a month later. I will know more about all of this soon.
Once we are discharged from the hospital, which could be within the next two weeks, we will stay at the Ronald McDonald House for about four to six weeks as an outpatient. He will have labs everyday, therapy sessions, echo's, etc. We will also learn how to administer his medicines and give him his feeds if he still has his NG tube (which he most likely will). THEN...we go home! We will have routine follow up appointments back home with doctors and therapists in our area who will communicate Nolan's status to his transplant doctors in Pittsburgh. We will always do our cardiac care at CHP for Nolan until he is an adult, and wherever life may take Nolan, he will always need to have a cardiologist trained in transplant care near. So, we have a ways to go, however, we can see that the light is truly at the end of the tunnel!
Today a group of wonderful friends (Lindsay and Matt Gale, Jon and Carrie Littlewood, Mike and Steph Zenzel) held an amazing benefit for Nolan's Fund. My husband and parents got to be there, and I hear it was so great. Matt said he was so moved and touched. The event took place at the Frosty Valley Country Club in Danville, and it was a day long event. First there was a round of snow golf, followed by a polar plunge! The pictures were hilarious and I am so amazed how many people participated! (even Matt, my dad and KC Shaner took the plunge!) After, there was food, music, games, giveaways...just sounded like so much fun. I am so glad Matt got to be there to see our good friends and let everyone know how our boy is doing, and how much it means for them to represent and help him. We are forever grateful and love you guys so much!
Tonight I am having a sleep over with my little man. Tomorrow Matt will join me in Pittsburgh. We plan on hanging with our warrior and watching the Super Bowl! Monday I am heading back home to be with my favorite gal and will be back in Pittsburgh on Friday.
I hope everyone is having a great weekend. Mine has been great so far. Seeing Nolan's OWN heart beating so beautifully is by far the greatest feeling I have had for some time. Our world is slowly coming back together. Blessed and thankful.
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ENJOY SOME PLUNGE PICS BELOW!
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