Friday, April 6, 2012

Day Eighteen Post Op

Well, this morning has already been a bit nerve-wracking. They were about to give Charles his ativan when I mentioned the nurse practitioner's orders to discontinue it. Apparently, she never wrote it down in her orders, but she mentioned it to me so they held off on it until rounds, and they decided during rounds to stop it. The possibility of going home tomorrow was almost taken away, but he is sleeping right now. He hasn't shown any signs of withdrawal (thank goodness!) so we may be going home tomorrow!!
It's still pretty early so there isn't much to talk about so I will update afterwards. Time for breakfast!

Scary realization today - Someone named Dr. Almond from the Heart Failure Services in Children's came to talk to me this morning. He mentioned that he would be looking at Charles's medications and altering them to "ensure the highest survival rate possible". I don't think of my son surviving every single day. I found myself in the same trap everyone else is in. He didn't just survive surgery; every day is a triumph for him. They talked about the possibility of him needing a transplant in a year if his echo doesn't improve in the next six months. They said "although he is doing amazing, there is always a possibility he could need a heart transplant in the future so if that day comes, we will have a talk about it then." Did I mention the Heart Failure Service is also known as the Transplant Team here? A heart transplant never crossed my mind. I honestly thought that we were on the road to healing and that he would be on medication for the next year or so, and he will be weaned off of it, and Charlie would be a "normal" kid before his second birthday. It's unfortunate that I have adapted that mentality because being a mother in this situation, I should learn ANYTHING IS POSSIBLE. It is a bit frightening, but on a more positive note, I spoke to another nurse practitioner, (the fourth since we've been in this unit), and she told me that it is very likely we will be going home tomorrow. She will let me know for sure by 3 or 4PM when she speaks to the rest of Charlie's team and as long as no one has any objections. She is calling his medication into Rite Aid. Surprisingly, they are going to make all of his medications. (I guess some pharmacies don't mix some of the meds he is on.) She is also requesting a nurse makes a few visits to our house during the week to make sure Charlie is still doing well after discharge, but that will only be the first week. Next week, we have an appointment at Good Samaritan in Brockton with his cardiologist. (Apparently, his cardiologist just started making appointments there which is closer to us than South Shore in Weymouth.) I cannot wait to get out of this hospital and shower and shave and get comfortable in my own home, surrounded by my family, and sleep in my own bed. It will be great. I know everyone keeps saying that I need to be patient and wait until Charlie is ready, but I am sure he is. We have had a quiet past three or four days. He is doing so well, and I'm sure he would feel comfortable being at home. Well, I will let you know more when I get anymore news. They will be doing a chest x-ray today because they think we should be going home so they would like to get one done before we go. Updates soon!

It is definite - WE ARE GOING HOME TOMORROW!! :D Yay! On the three week anniversary of our arrival here. I cannot explain how happy I will be to know that hopefully I will never have to sleep here again. Outpatient visits will be better than staying here for three weeks. It feels like it has been three months. We had some unexpected visitors today - my father and little brother, and it was so nice to have a surprise visit. I am exhausted, and Charles will be waking up soon to eat so I will update tomorrow. I just wanted to let everyone know that we are going home!

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