Tuesday, June 30, 2009

Tucker's Surgery Updates, Day 5

OK .....Warning I am going to CUSSS....

Dammit Dammit Dammit. We went back to paralysis again. His pressures are just too high when he really wakes up. He even opened his eyes at us. I sang to him and he calmed for a minute but started back up, daddy talked to him and he calmed for a minute....then back up and didn't come back down until they put him under....no more moving and grooving for him for another few days. They are going to pull the lines that are measuring the heart, the one in the left Dr Del nido wants to go ahead and take it out, it isn't meant to be there for long periods and we can see what is going on by the pulmonary line that will still be there. (this is the line that was pulled out twice today and works half the time) They will also do another Echo to see what the heart looks like after the wake up time we had, make sure function has not changed.

Todd and I are heavy hearted once again. We know this is the way it is, the way it has to be. We don't want any harm to our precious boy...but we cant help but feel disappointment and sadness.

MAYBE....just maybe

OK, so we have been of the paralyzing medicine for a little over 2 hours, came off it around 4ish. We have some wiggle and we are keeping our pressures where they are supposed to be. We are staying very quiet and not touching as well....anything to help keep him in a good place and off the medicine...heading in the right direction.

We have had quite a day....I had to talk to the charge nurse requesting that we do not have the same nurse again. I am sure she is fine, and good at her job....however she is just not confident enough for me. I have many questions, I watch intently, and I hover. Immediately this morning she accidentaly pulled on the chest wire and pulled it enough for it not to work. THIS is the wire that measures Tuckers pressure in the left side of his heart, something we NEED to have... it took one hour to get it to work, and while putting the dressing back over it, she pulled it again.!!! Now it works sometimes and NOT sometimes. Everyone is human, everyone makes mistakes,,,,but I have no confidence in her now. I want someone that is confident and knows their job, enough not to be intimidated by me. I am sorry, but she just doesn't cut it. I know I am bad....but darn it all, this is my son she is to be caring for. I hate doing that, I have only had to do that one other time in all the times Tucker has been hospitalized....but I have to feel comfortable that he is getting the attention and care he needs.

Soooo, pray tonight that Tucker continues to do well moving around...that we continue to progress forward. IF we can continue to do well after 12 hours or so they will pull the chest tubes....then we will work on the ventilator. OH, by the way,,,,he is breathing over it right now, on occasion...all good signs.

Today will be a big day for Tucker as they are going to try and wake him a little. He needs all the prayers and love you can send his way. Mommy posted an update early this morning, so that's posted below. I am awaiting another update soon.

Thank you, everyone, for all of the love and support you have given to Tucker and his family. *hugs*

OK, so yesterday was extremely quiet. We actually got out and walked around..Sheena and I were in flip flops which was not the best idea. We saw Fenway park and tried to find the Harley shop but when we did, they had closed it down. Then we ate some dinner and came back to the room. The girls headed back to the sleep room and Todd and I hang out until I couldnt keep my eyes open anymore. I think I was alseep way before 10 and had very little awake time last night. We had a great nurse that takes good care of Tuckman. (as you can see the stuff on his forehead is gone, the first of many things to be taken away....yeah)

Yesterday they worked on getting Tucker in the right place with the medicine mix. They added methadone and ativan, on top of the morphine. They are a constant drip. Then when they mess with him he gets bullous doses of versid and morphine. They are weaning him from the morphine ever so slowly as they tend to withdrawal after days on it....hence the methadone and ativan. With this new mix his pressures have stayed in the teens where they want them...but he isnt awake and moving around either....so we will test him again today.
They did an echo yesterday as well to check heart function. It all looks really good. His left side is pumping, very little leakage around the valves....very little as in hardly worth mentioning the doctor said. He is still peeing very well, getting that fluid off. They do an EKG once to twice a day right now. His heart is currently being paced, meaning it is on a pace maker making it beat so many times in a minute. This is done so that the heart is beating fast, pumping more blood through it, trying to make it used to the new plumbing. Each day they come in and take the pace off, letting Tucker do the work to see what the heart rate is and to ensure it is pumping in sync. Well, Tuckers heart is not in sync. His rate is good but the heart is not pumping all at one time, one chamber pumps then the next currently. This was not the case right after surgery so they are not too concerned at this time. Sometimes it takes a while for the heart to get back "in sync". They would be more concerned if he had never, since surgery, been in sync...but he has. So the pacer wires will stay in until that fixes itself. Worse case, absolute worse case, is that the heart doesnt and he has to be paced all the time...then we would look at putting in a pace maker. They really dont anticipate that but it is always a chance.

We received a care package yesterday from Kim, Wills mom. It was like Christmas... a pillow case for Tuckers pillow, a laundry bag, laundry soap and change for the machines, a razor (OHG how I needed that)all kinds of goodies. Thank you Kim. We also received dinner from Michele, I might have mentioned it...I cant remember but wanted to say thank you to her as well. (Enchiladas were great!!)

So today is just about getting the paralyzing medicine off and let him move around a little. The goal is to get him off the vent within this week....so things could progress quickly, praying for that anyway. I will post when I get new news or something happens other than that you can assume all is quiet.

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