July 9, 2012

One Step At A Time

We again apologize for the delays in getting posts up, but with the family living at Ronald McDonald House and all that seems to happen in a day at the hospital it is sometimes hard to keep up.  We do post shorter updates more frequently on Facebook (http://facebook.com/friendsoftim) so feel free to Like that page to get those added to your newsfeed or if you aren't a Facebook person the page is still public so you can stop by and see the updates too.

As for Tim, he was extubated on Friday at about 12:30 in the afternoon.  Perhaps because of the elephant sized doses of sedatives he'd been taking he was pretty pleasant afterwards which is a little unusual for him.  He was able to easily adjust back to drinking and eating within a few hours, even having some chicken and baked potato for dinner that night.

Over the weekend we spent time trying to get Tim stronger by doing some breathing exercises, going for short walks and sitting in one of the chairs in the room.  We also spent some time playing video games and watching movies too.  On Sunday Tim had a follow-up MRI which was a different experience for him since he'd never been able to have one prior to his transplant and the one done earlier in the week was while he was fully sedated.  It was a little loud, but Tim was a brave guy and did well keeping still during the scan.  He also thought it was cool that some of the branding on the machine had his name on it too so we decided that the machine was his and we were just letting the hospital use it.

The results of the MRI turned out to be positive in that there was nothing unexpected on it.  The feedback we've received from the neurology and neurosurgery teams is that Tim looks good and while they will want some follow-up scans done in the future they are pretty satisfied with where he's at.

Now the cardiology team is being a bit more conservative with Tim since they don't want to have a repeat of what happened last week.  While we had been hoping to have Tim released to the Ronald McDonald House early this week the news today is that the doctors now want to keep Tim until after his second biopsy, which is scheduled for this Friday.  That means the soonest he could be released is Saturday.  Not exactly the news we were hoping to hear.  We will see how the week goes though.

Tim is definitely getting close to the end of his patience about being in the hospital and if we see any serious turn in his attitude we may push the issue more.  Considering he's been in the hospital for six weeks already we are very proud of how well he's tolerated it all, but we've also started to hear him say that he's missing mom or dad when they aren't there more than before and we've also heard him say he just wants to go home too.  We've seen Tim get really down after surgery before, most notably after his double switch 2 years ago, so we want to do everything we can to avoid that again. The difference this time around is that it appears that physically he's generally feeling much better which we hope will help buoy his spirits.

Otherwise this week is one of some changes.  Dad is back at work so mom is back to spending her days at the hospital.  This week Lou is staying with his grandma Jean so he can go to camp, while Rosie is staying with mom and is having helpers come to help occupy her during the day.  Dad will still be sleeping at the hospital until Tim is discharged.  In many ways we're getting back to life as it was before the transplant while we were waiting for a heart, only with some of the family living at the Ronald McDonald House instead of at home.

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