January 22, 2008

From the Night Before to the Night After

January 20, 2008 at 07:14 PM CST
Our very chilly weekend in Ann Arbor is nearly over, and we will report for surgery at 6:30 tomorrow morning. It was definitely a challenge this weekend keeping everyone busy, but we did our best. I've included a few new photos. On Saturday we visited the Hands On Museum here in Ann Arbor. It was a lot of fun for the boys and gave them a much needed outlet for their boundless energy. In the afternoon we did some swimming at Bubbie and Zadie's hotel. It was a busy day, and everyone got some much needed sleep. Today, more swimming and an early dinner with all the grandparents. Now, the goal is to bed with everyone so we'll be chipper in the morning! Thanks again to all who are thinking of us, we really do appreciate it.

January 21, 2008 at 08:28 AM CST

Tim was taken for surgery at about 7:15 local time. He was feeling a little anxious and hungry, and was grumpy as a result and was quite clingy to his mom. The nurse gave him some "happy" drug to help calm him. He fought it for a few minutes, but almost like a switch was flipped he went from crying to laughing and all evidence of his anxiety was washed away with a laugh. He had mom and dad laughing along with him which was a nice way to hand him off to the doctors to prep him for surgery. We expect to hear something at around 10 local time with an update on how things are going, but presumably so far so good.

January 21, 2008 at 09:15 AM CST

We already have good news! Dr. Bove came and updated us to let us know that things went very well this morning. Tim will be up to his room within the hour and we should be able to see him about an hour after that. According to Dr. Bove, he was able to successfully band Tim's PA to achieve 60% of the necessary pressure needed to get him ready for the double switch. We need him to get to 90% of systemic pressure before he will be ready for the big surgery. To get there we may have to come back to Michigan for an additional procedure to tighten the band, or he may get there on his own as he grows. To see how he is doing we will have to have regular echocardiograms which will help the doctors see if adjustments need to be made. The doctor also told us that they will be performing an echo both tonight and tomorrow morning to monitor how Tim's heart is functioning and to determine if he needs the band tightened or loosened before we go home. If he does need to be adjusted the doctor has developed a method to do so without having to make a full incision, but rather a small one to reach small leads that are left just under his skin. While this method is not 100% effective, it does no harm and if necessary a larger incision can still be made to make the adjustments if the leads are not able to do the tightening. Tim will be on the ventilator until the doctors have determined that he does not need any adjustments, and once off the vent it is expected that he should be out of the PICU pretty quickly.

January 21, 2008 at 01:42 PM CST

We've had a chance to see Tim in the PICU. He's looking good, although when we saw him he was still sleeping. According to his nurse, he's already woken once (although they're keeping him sedated for now) and was down to using the vent just 70% of the time. The nurse thinks that he'll be ready to be extubated tonight or tomorrow morning. She told us that they will be doing the first post-surgical echo at 3 today, and another one later tonight and another in the morning. Lou is going to visit his brother shortly with mom before the shift change at 3 when the PICU is closed to visitors for an hour. Unfortunately the PICU is managed in such a way that there are good chunks of time that we can't be with Tim, like when they are bringing another child in from the OR or during shift changes. Hopefully if Tim is off the vent and has good looking echos he will be able to be moved to a part of the floor with more liberal visiting guidelines tomorrow.

January 21, 2008 at 02:19 PM CST

Mom and Lou came back from visiting Tim. He's still sleeping, but the nurses said that Tim has woken up a few times and is feeling grumpy - I wonder why. Despite not being happy about where he's at, he's still doing great. He's pretty much pacing the vent, which means he's getting very close to coming off of it. They should be doing his echo right about now and hopefully that will look good too. We're going to head back for a visit as soon as we can after the 3:00 shift change

January 21, 2008 at 05:17 PM CST

Just returned from another visit with Tim. His progress continues to go as well as we could hope. His first echo showed that his heart is responding well to the band and as long as the next one looks as good Dr. Bove said that there will be no need for any adjustment now. The reason we had to leave him now was because they are extubating him as I write. He's doing incredibly well and seems to be doing better than we expected. Now that he is coming off the vent we're looking forward to having him out of the PICU and on the floor sometime tomorrow. We will be able to be back at his side in about a half an hour, although shift change is at 7 so depending on how everything times out we might have to wait until 8 or so to see him again.

January 21, 2008 at 08:37 PM CST

The family went for one last visit for the day so Tim can get some well deserved rest for the night. He's off the vent and only getting limited oxygen through the canula - all good progress. The nurse for the night shift said all she's doing is checking vitals once an hour and giving him Tylenol every 6 hours and antibiotics for his chest tube and his pain meds. Earlier in the day his chest tube was draining a good amount of fluid, but when we were in tonight it was almost completely clear. Everything is still looking to be on track for getting him to the floor sometime tomorrow. He'll get started on clear fluids tomorrow too.

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