I talked with one of our transplant physicians for awhile today, Dr. Susan Miller. She put me at ease about everything, not just agitation, just all of this. Nolan is still on his pacer wires and she told me not to worry, that many newly transplanted children are on pacer wires for awhile. It takes some time for the new heart to acclimate to its new body, especially with Nolan's heart being smaller. I asked her a whole bunch of other questions, which she patiently answered and I am so appreciative for that. He has had a high respiratory rate for the past couple days, but that could be do to a number of things. Most importantly he does not appear to be struggling to breath, his look great, his o2 level is spot on (only on .25 ml of o2!) and his color is appropriate. I personally think he was pretty constipated all day. :) Once we got that poo out of him, he did have a moment of peace. HA! He is on 25 ml/hour of formula into his belly, which is all new, too. (Before transplant he was being fed past his stomach into his lower intestines.) I did notice he was pretty gassy, so we may need to consider an even more sensitive formula. We will see.
I also asked Dr. Miller about his birth heart. They will be doing genetic testing on it, as well as further studies about children's cardiomyopathy. I am glad that Nolan can help in the research on why this happens to children and maybe figure out ways to help prevent it. I have so many things I want to do to give back after we are settled into life, and one of them is to definitely help in advocating research for children's cardiomyopathy and the importance of organ donation. Those two things are Nolan's life. I never want anyone to experience this, watch their children struggle or not make it. It pains me to see new patients come in to the CICU scared, helpless and wondering...why me? I digress! I have a lot on my mind today. LASTLY, I asked to see Nolan's birth heart. The heart that once upon a time was healthy. So, I think I will get to do that sometime soon, as will Matt. I was introduced to our transplant coordinator yesterday who will be are go-to from here on out with any transplant related questions. She handed me THE BINDER. It is anything and everything you need to know about the dos and donts for transplant patients. AHHHH! I haven't opened it yet, but I am told to study. I guess this binder will become a piece of Matt and I. I think I will decorate it.
PS: Tonight Penn College's boys basketball team represented Team Nolan during their basketball game! Thank you Miranda Fink for organizing!
For those that don't have Facebook, I will end tonight with my dad's amazing tribute to Nolan that he gave yesterday in the House of Representatives. GOOD NIGHT!
#nhos
teamnolan.weebly.com
Don't worry, Mama! It's all going to keep getting better from here! Nolan is doing AMAZING! How can I say that? My daughter also has a heart transplant (Sept 4th) and it took a bit longer for her recovery. Well, quite a bit longer and we had some extra bumps in the road.
ReplyDeleteThat binder- read it! Don't wait another day! Read it when you wake tomorrow. Read it before lunch. It won't take long to go through, but you need to know what's in it. Your team will tell you again and again about everything, but this will help make stick what they tell you. I read most of ours in under 2 hours. Another thing, take it with you daily, and hand it to each team member you meet. Have them put their name under their job title inside it, along with contact info. I wish I'd have thought of that sooner. Names get lost and faces blur when you're under all that stress.
It will get better. It will get easier as you get into your new routine. Enjoy your new normal. Time might feel like it's being sluggish right now, but it will fly by soon after you get home. Nolan's going to rock his new heart!
Thank you, Amy! How is your daughter? How is life? I have such a hard time imagining us all being home together! :)
DeleteHi there! One of my friends is somehow related to you or your husband, Connie Ball McGill and she shared your blog with me. We went to church together when my son was going through a heart transplant, 11 years ago at age 19. I have walked every path and felt every emotion that you have described and continue to pray for sweet Nolan and your family! He will do so well and there will come a time when you will go days, weeks and months without even thinking of the fact that he has had a heart transplant! I know it's hard to imagine, but it WILL happen!
ReplyDeleteI remember waking up at night and immediately thinking about it and worrying, but now I rarely do! He is 30 and married and has his own business and life is Good and God is GREAT!!
You will wear that book out and then you won't even need it anymore. I guess ours is long gone! Your transplant coordinator is your everything so keep a list of questions to ask!
Good Bless!
Amazing. Thank you so much for responding. The fact that your son's life is "normal" just makes me so happy. I want Nolan to be able to do EVERYTHING he wants in life. I am so happy your son is doing well. Seriously, I appreciate you reaching out. I have goosebumps. God Bless you and your family!
Delete