Friday, August 7, 2009

Day 4 Off the Vent, 44 Days Post Surgery

Tucker did really well on Thursday and Mommy was able to hold him a couple of times.

"I got to hold him twice today. We did it while he was pretty sleepy and not awake and agitated. We swaddled him up and he laid in my arms for about an hour the first time. Then he got a little restless and I put him back in his bed. The second time he had a huge blow out diaper, front-back-sides---everywhere so he wasn't there long. (he needed to poop so I am not complaining at all) It was a step towards where we want to be. Awkward with the mask, tubes, iv's and swaddled...but very NICE!!"

The main thing going on, trying to get Tucker weaned from the pain meds without putting him into terrible withdrawal. There's a fine line with any meds, but after almost 2 months of being sedated and on large doses of pain meds, anyone would have a hard time coming off them. The struggled the first night to keep him comfortable. I think by mid day yesterday, they found a dosage that worked.

"After the terrible night of NO he rests. I think, knock on wood, that we have finally found the mix of medicine to keep Tucker comfortable. At rounds they looked at all the amounts given throughout the night to capture Tucker and they came up with a plan. It has worked so far today, almost too good. (meaning maybe too much once again, we will have to wean back but slowly..) Today they will let him rest, since we were up all night..but tomorrow we wake up, move around, and wean the settings on the mask. We had another 10-15 minute time frame off today. His oxygen levels stayed pretty good, needed blow by oxygen is all...which is a good sign. We might even get longer periods of time off the mask tomorrow. We will see."

Mommy is staying busy by filling the scrapbooks about this Journey of Tucker's. If you have anything you'd like to add to the book, please send it to Letters, photos, pictures, cards, anything at all that will help document Tucker's Journey For a Whole Heart.

Today, FRIDAY, is day four off the vent. I hope Tucker continues to do well and progresses more and more each day.

To catch small updates throughout the days, follow me on Twitter.

Wednesday, August 5, 2009

Tucker, Off Vent, Day 2 VIDEO

So, Tucker has some "mask off" time to produce a cough for the respiratory therapist. The tape on his face is to protect it with the mask on....but he is interacting and understands what we ask. Still some withdrawal today but most of the time, while awake, doing great with the breathing and taking in big breathes.

Tuesday, August 4, 2009


Stand up and cheer! Thank you to each and every one of you for your thoughts and prayers!

Tucker is now off the vent and on a CPAP mask, Continuous Positive Air Pressure. The CPAP mask will help to wean Tucker off of the prescribed "room air" gases that he was receiving during intubation. Weaning him this way will make it much easier on Tucker.

Overnight Complications

During the wee hours of the morning, Tucker had a few complications. I'll give you a simple run down and then update Twitter as needed.

130am (EST) a new medication was added to Tucker's regimen to begin the Detox of his body.

This new med was suppose to work instantly, instead Tucker laughed it off.

They tried (at least half a dozen times) to get an arterial line in to help monitor his blood pressure very closely, but they haven't been able to find a line. The new meds can cause really low BP so they must watch it carefully and have another med handy to bring his BP back up if it should fall.

Okay, so that brings us to about 330am (EST) this morning.

Tucker began having a negative reaction the detox meds. Started hallucinating and such. Heart rate changed dramatically and he didn't know who Mommy was. This was suppose to be a nice and gentle drug to bring Tucker down.

They stopped the meds. They are going to have to try to find something else. He was awake at this time and doing better with the meds off. Still 12 pokes in and no arterial line either.

They gave him some Cloralhidrate to help get an i.v so they can do the new drugs we are putting on board.

LONG night/morning for all. I haven't heard from her this morning. (945am CST) I hope they got things better and soon.

Please keep him in your thoughts and prayers today. Updates will be going out via Twitter for a good portion of the day. Follow Me On Twitter.

Monday, August 3, 2009

Tuesday's A BIG Day

Wow, so we are going on 7 weeks of Tucker being in the hospital in Boston. Can you believe it?

Well, 7 weeks later and the Doc's think tmrw is the day.

The day to put Tucker in Detox (from sedation and pain meds) and pull that vent right out.

He's ready. He wants to be awake and play with his cars and watch cartoons.

It seems Tucker is tempting a fever, so cultures were taken and they are awaiting the results. However, the intention is still to get him "unhooked" from the vent on Tuesday. Let's keep our fingers (and toes) crossed that all goes well and the cultures com back negativo!

We need fabulous vibes through the night that he sleeps well and saves energy for tmrw. You know he's got a fight (or five) to pick with all of those nurses sticking him. lol!!

When Tucker does come off the vent, he needs to be able to tolerate it and expand his lungs enough to keep fluid from gathering in his lungs and around his heart.

Tucker will also need to be weaned enough from the sedation that he can put all of his energy that's been sitting in reserve to take deep, full breathes.

And finally, with all of the i's dotted ant the t's crossed, we pray that Tucker's heart will welcome the new flow and not overwork itself.

Take a good luck at this sweet little man...tmrw, I hope those tubies are gone, forever.

Send your kisses, hugs, love, prayers and peaceful thoughts to Tucker and his family.