It has been about 62 hours since Nolan has received the gift of life. It has been a whirlwind. There are wonderful moments and still some scary ones. But as the hours pass, the better things are getting for Nolan. He is truly amazing, as are the team of doctors, CRNPs, PAs and RNs involved in cardiac care at CHP.We feel so blessed to have them caring for Nolan, and of course, blessed for the family who so graciously gave our son a chance.
I am still beyond exhausted. I think after one more good nights sleep I will feel like a human being again. I think my mind will be a little clearer, and I am pretty sure a lot of this is going to start sinking in. I still have a hard time wrapping my head around the fact that the heart Nolan was born with is gone and replaced by someone else's. I really haven't let myself go THERE yet, but I know it is only a matter of time when it truly slaps me in the face. Matt and I have been a little emotional today. We have been through so much...NOLAN has been through so much, and it's just hard to believe that we are here. I will never be able to explain the crazy emotions that you go through when experiencing this. My son is going to live. I never was 100% sure that he was. Honestly, I rarely had dreams about Nolan. It has always scared me. But since the transplant, every time I have fallen asleep he is now there. It is so strange to me...but a relief!
So...the update! Nolan got extubated at 9 am this morning. He did really well and I was right by his side. Things were a little up and down after that. Around 12:30 pm he was in a really deep sleep and his heart rate was around 97 (which I have really have never seen before) and I could see he was pretty pale and kind of dusky, however his o2 level was near 100%. He woke up and seemed OK, but he vitals were a little off. So, they turned off his precedex (sedation medication) and order ultrasound to come to take a look around his neck to make sure there was no clotting. Even before ultrasound got there, he started to look better, but they still did it as a precaution. Everything was OK. Around 3 pm he got an NG tube placed (feeding tube); this is pretty big because since we have been here he had an NJ tube, which passes by the stomach into the lower intestines. They started him back on his original regimen of sedation meds...clonidine, methadone and Ativan, all orally through the NG. He has tolerated it so far, that is a good sign that his belly is OK. Tonight they also started slow feeds. They have already pulled some lines, stopped some meds and he is becoming more himself. Tomorrow they will pull his arterial line and his draining tube...then we are free to hold him! It will be so strange without the VAD!
We had a good day. We pray it continues to go this way, however, we know there will be some good and bad days ahead. You are never prepared for that, but realistic.
I will have a lot more pictures tomorrow! For now, I am going to get another good nights sleep and ready to have an AMAZING week!
KEEP THE POSITIVE VIBES AND PRAYERS COMING!
#nhos
teamnolan.weebly.com
Never forget: 1/23/14
Heart day: 1/24/14
The Mensch's and Wintersteen's are sending you positive thoughts, prayers and tons of hugs. Nolan is our Hero!! ��❤️
ReplyDeleteYour in my continued thoughts and prayers Your entire family. Its is scary to see your litttle one go thru so much but God is right there holding you all in his plan. Will continue to pray for all of you . Keep Fighting Nolan!
ReplyDeleteSweet, SWEET dreams. Tomorrow and tomorrow and tomorrow.
ReplyDeleteFrom one heart transplant mom to another, I wish I could say you'll find sleep. But honestly, nearly 5 months post transplant, I still worry and wake in the middle of the night, and not just because Q is a baby. I promise you'll adapt to a new normal that won't look anything like what you think it will now. But, with time, things will quiet down and the new routine will become the new normal. All of it, and all that goes with it will settle down and seem "normal". Also, my only advice is to keep a suitcase packed and load it when you go to clinic. It will be that one time you don't, that you'll be staying for a couple days. While you will never forget the gift given to Nolan, as he grows, he will take this heart and make it his own. It will simply become Nolan's new heart, his special heart, and the fear you've been staring at day after day with his old heart will start to fade. It's Nolan's heart. The newness will fade- the appreciation, never. I pray he continues to make it work for him, just as Quincy has done with hers.
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