9 Days Post Surgery

Saturday, July 04, 2009

About 6 hours off.....

and now we have spiked a fever of 102.8. Tylenol was given, clothes on our head...dont really think it is infection, white blood cell count is still the same, but will do some cultures....They are thinking it is because he is off the paralytic...but dont know for sure. They have mentioned that we might have to go back on paralytic IF we cannot find the source or it climbs higher.
Pray Pray Pray....sorry guys, I know everyone is putting in extra time on their knees today but nothing better than prayer.....it works!!!!

One hour and 20 min...still off so far

They increased Tuckers sedation medicines this go around to ensure he stays sedated to help him stay comfortable....we arent completely satified yet....we will see how the next hours go. Will update again soon. Again, this is the paralyzing medicine that we are talking, this will allow Tucker to move, start taking his own breathes...the first step of many.

Paralytic shut off.....now we wait

Happy 4th of July.....

The celebration of our Independence, the thankfulness of our freedoms.....today is going to be a good day. Everyone have safe travels and celebrations today.

Post Surgery Day 8

Friday, July 03, 2009

They will be surprised....

if Tucker comes off paralysis tomorrow without trouble. The doctor just left and he said it would be a HUGE step if he did and stayed off. We are going to add some more sedation medicine on board, he has found that T21 kiddos take a little more to keep them sedated. Yeah, Tucker starts moving 15 minutes after the medicine is stopped, they originally said it would take a few hours to wear off.... SO, they are going to tweak that and turn down the nitric oxide all the way on his vent tonight, plus turn up the peep on the vent (the expiatory pressure)...giving him optimum chance of coming off.

Today is day 8 post surgery.....no signs of my Tucker yet. He is making steps but little ones. I know every step in the right direction is good, I know that! Don't get me wrong....but I really want my Tucker, the one that has to put his hand at my neck to sleep, the one that says MOM, MOM, MOM....over and over again, the one that asks to watch Jack and Little Bear. I want him to tell me NO and throw his toys....and to see that smile. OH that smile!!!

It is so hard being in this place. We have made some friends here and when heartache hits them, it hits us as well. It makes you want to stay in your room and become a recluse....no emotional attachments. A mother lost her son today, they had been here 3 months...he was doing well yesterday...we woke up today and their room is empty....he passed away. The walls have many stories....many tears and many joys.

Please keep Tucker in your prayers tonight....that he will have the strength he needs to heal, that his heart will relax and accept the new repair, that his lungs will accept and not resist,,,and that Todd and I have the faith to take what comes.

I LOVE good nurses....

We have had the same nurse the past 3 nights, Katie!!! LOVE HER. She is on the ball, a little OCD like myself, and just cares about her patients. Tucker even got dressed last night...thanks to her. I have gotten good rest and feel very relaxed when she is here watching over Tuck. I always appreciate the good ones when we have them because then a little of my stress goes away. THANK YOU KATIE!!!!!!

Recent Tucker Updates

Thursday, July 02, 2009

a little bit like Christmas

Look what we got today for Tuck man..... He LOVES his hot wheel cars and I think there are atleast a dozen shoved is this basket that was delivered. Along with Caprison, crackers, a holder for the cars, bubbles, and who knows what else is in there. It is OVERLY stuffed full.

Thank you to my work family (NAG)!!!!! Thank you thank you Thank you. He will love digging through it as soon as he is feeling better.

Same as yesterday for today...

They decided not to try to wake him today. Give him another day or two since we made some steps in the right direction yesterday. Which is good actually...I started yesterday trying to find our local church here so they could come and give Tucker a blessing. I finally got ahold of them this morning and they will be out soon.....so a blessing on board before we try is nothing but a good thing.

So, the girls flights are in the air and it is just Todd and I. I have found a few moms that I knew about through carepages and have started some new "heart" friends.....it is nice to talk about those things we all go through and to be able to relieve some frustration. Knowing they know exactly what we are going through or have been through is a great comfort....not that I would wish for anyone to go through what we have.....

Todd is down helping Trisha (Johnnys mom) with her computer so she can webcam to her girls this weekend. They were supposed to come up and spend the weekend but they came down with colds so they wont be able to come up....she is really bummed. Someone suggested (I believe it was you TINA....smart lady)a webcam call to the girls. She has been here since the 10th of June and is missing them, as any one would.

I am going to curl up with the 2nd book of Twilight....yeah can you believe I am reading them. Sheena was reading them, Alisha LOVES them...so, even though I am not a vampire person, I am reading them. They are more like a love story with bits of "self control" and good vs evil in them. I actually enjoyed the first one.

Prayers for another quiet, little steps toward recovery, kind of a day.

Wednesday, July 01, 2009

Good day...

Lets see....we made a small amount of progress today...but progress!!!! We had our LAP line taken out, this is the line that measures pressures in the left side of Tuckers heart. (the left side is the side that didn't use to work and was corrected during this surgery) There was no bleeding, which was good. (they did have blood in the room ready for transfusion just in case--with all the heparin he is getting bleeding can become an issue) The output is still more than input which means he continues to get fluid off. His heart, if only intermittently, started beating in sync with some off sync times in between.... a good sign that a pacer wont be needed for a long amount of time. The dopamine, which is blood pressure medicine, has been turned way down as he is keeping his blood pressure up on his own. And last but not least..his blood gases are excellent so they got to go down on his ventilator settings. All good things and a quiet day.

Tucker is looking nice and comfortable, his capillaries refill as soon as you touch his finger tips..and for those of you who watch Tucker you know how purple he USED to be. 100 percent oxygenated blood....NEVER did we think Tucker would meet that. We are not going to be able to keep up with this boy very very soon......again, all good things!!!

Tomorrow we try again on lifting the paralysis....

Tucker's Surgery Updates, Day 7

Everything was pretty quiet today. Tucker had one chest tube removed today, which is great! They will try to wake him again sometime on Thursday. Please keep Tucker in your prayers. Pray that he has the strength to come around tmrw. Below is an update for today, Wednesday Day 6.

What will today bring....

Last night was quiet but busy. His arterial line in his groin, which has the line that they messure his pressures in, this is total pressure not pressure in his heart...this is a blood pressure line that the needle up into the vein.....went bad. So they had to find another arterial line to put in. They finally got it, after several tries and two different Attendings. It was after midnight and things leveled out so I went to sleep. Didn't hear when they came in to do yet another i.v because the one in his thumb went bad, so another went into the foot. They are going to run out of spots soon and we aren't even awake yet.

I believe they will pull the lines out of his heart today and close the drain tubes. Other than that I don't think they have anything planned but they haven't done rounds yet....so I will post later as well.

Tucker got a bath, his tape changed on his precious face, he got a bath and his bedding changed....it was a busy night for the nurse.

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*

Update:

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.