Free At Last!

It's been a busy day full of surprises today.  We started the day with a check from the neurologists who started asking about when Tim was going to be discharged.  We told them that we were not going to talk about discharge until we were being discharged.  Who knew that we would be having that conversation so soon afterwards?  Yes, today was the day Tim was released from the hospital so he could start his time at Ronald McDonald House.

To back up a little bit, the morning was a little different than many we've had of late.  Dad went off to work as he has since last week, but mom was back home on Lombard to deal with getting a replacement window for our van after someone broke into it over the weekend to steal the GPS.  So Tim had cousin Allison, who is visiting from California for the week, sitting with him when the doctors and nurses started coming in talking about discharging him in earnest.  After getting confirmation from Tim's nurse that yes, in fact, he was being discharged mom and dad got back to the hospital to start packing up everything we had in the room.  After a couple more hours used to remove Tim's central line, get a final x-ray and complete all the discharge paperwork we were off.

After checking Tim in at Ronald McDonald House we also moved to a larger room to better accommodate the whole family.  After getting everything from the hospital and our old room moved into the new room Tim enjoyed his first meal outside of the hospital since May.  RMH was serving a dinner tonight that included beef tips with mushrooms, BBQ chicken, chicken fingers and mac and cheese. Tim was in heaven, even if his eyes were a little bigger than his stomach.  While he didn't eat a lot, he did have a late lunch and more than anything Tim seemed to be looking forward to a night of sleep that didn't include getting checked for vitals every four hours.

We have plenty of follow-up appointments scheduled over the next few weeks with the cardiology team, including another biopsy next week, as well as with the neurologists and neurosurgeons.  Still, all of that looks like it will be easy especially since the whole family can now sleep under one roof which can only make life that much easier.

Art Auction Update

As a reminder, some of the auctions being hosted at http://studiohangouts.com/ArtForTimsHeart/?page_id=100#  will be closing up in 5 days, with the rest finishing in 7.  There are still a few pieces that do not have any bids and many that are still at just $25 for an original piece of art.  If you haven't already, be sure to stop over and check things out and bid if anything strikes your fancy, and be sure to share the link with anyone that you think would be interested.

In other news, Tim's neurological blips seem to be tied to his blood pressure.  He has been put on medicine to try and keep his pressure lower and the result has been wonderful to see.  His headaches seem to have passed and his confusion and vision issues also seem to have passed.  Now if we can just keep it all under control for a good long while.  The passing of the headaches also allowed Tim to have the best night of sleep he's had since he was admitted way back on May 30th.  He slept through the night only waking up once.  Again, more nights like that and Tim should be feeling great.

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.

Slow & Steady....

And we thought things moved slowly with cardiology from time to time....

So, all things considered, Tim is improving as much as he can.  He tolerated the lower versed dosage from yesterday well and all outward neurological signs are that everything is still working well.  The neurology team lowered his dosage from 600 to 500 and we are currently awaiting the EEG to be hooked up again to monitor for any seizure activity.  Provided that Tim continues to be without any seizures they can lower his versed dosage by about 100 every 8 hours.  That puts us at least 40 hours away from being completely free of the sedative.  The medication can also help inhibit the seizures which is why they are decreasing the dosage so slowly.

Perhaps most significantly, Tim should be back off the ventilator this afternoon.  While it certainly isn't the end of the line, it is a big step towards getting him all the way back.  We're all looking forward to the strained demands for "Water" ever few minutes when that happens.

Otherwise, we do know that a scan of some kind will be done to see what Tim's brain looks like and Tim's next biopsy for his heart will be next Friday.  Our best guess is that provided everything goes well Tim's little event will have delayed his discharge by about a week, with him getting released the first half of next week.

Waking Up

This morning brings lots of good news.  The MRI came back negative, meaning there is no evidence of long term damage but also not showing any reason for what happened.  The official CT scan read did show that there was no change with the small bleed, but no change is definitely better than it getting worse.  The EEG also showed no seizure activity while Tim was heavily sedated.

With all of that information they have decided to start backing off on Tim's sedation in order to see if any seizure activity picks up as he is less sedated.  As a result he is now more awake, opening his eyes, following commands, answering questions and trying to talk over his vent.  Neurology was going to extubate him tomorrow, but the cardiology team, knowing Tim as they do, think that he won't wait that long and may push to get him off the vent sooner so he doesn't hurt himself trying to pull the tube himself.

We still have a ways to go, but these are all important improvements.  The other big plus is that isolation officially ended this morning so we can be with Tim without having to get all gowned up with gloves and masks.  Tim is still going to be very sensitive to what's around him, so any hint of illness will preclude someone from being around him but this is also a big step for us.

Keeping A Level Head

So, while we don't have any definitive answers here is what we do know at this point. Last night's CT scan showed that there was a small bleed on Tim's brain which caused some swelling. This, along with the other symptoms that were seen yesterday resulted in Tim being put on some anti-seizure medications and an EEG overnight. The EEG did show signs of some seizures, but none that resulted in any outward signs.

A follow-up CT was done this morning which on initial review looked like the amount of blood and swelling had decreased, but a more thorough read by a radiologist needs to be completed to confirm this. Tim is going to be hooked back up to the EEG to get some additional feedback about any seizures, if there are any. There is also an MRI scheduled for later this afternoon to get some more detailed pictures for the neurology team to work with.

The feedback we've gotten is that Tim's heart continues to be in great shape. As for the neurological side of things the current assumption is that the bleeding on his brain caused the seizures that we saw yesterday (blank stares, unable to respond to questions or directions). This is all treatable with medications and currently does not require any surgery. After last night's CT Tim was able to nod and shake his head to yes and no questions and so there isn't a lot of worry that his brain isn't working. The real concern is trying to stop whatever caused the issue so that no lasting damage can happen.

While all of this is obviously very scary for the family to have to deal with, especially since it was so unexpected for everyone, we are thankful that it happened when it did. We can only imagine what could have been if this all happened a day or two after being discharged and we were at Ronald McDonald House. Even though it is close by there's something about having the entire hospital and it's resources right there as something goes wrong. All the medical staff we've spoken to this morning has been very optimistic about the long term outcome while they are taking a very cautious approach in the short term to keep Tim as stable as possible.

A (Hopefully) Small Setback

So much for a quiet night.  At about 6 this evening Tim had an event where his oxygen saturation dropped quickly and he stopped talking or responding to anyone asking him questions or giving him directions.  Thankfully dad and Tim's nurse were right on top of things and quickly there was a room full of doctors and nurses tending to Tim to try and keep him breathing and to see what was going on with him.

For now they are trying to figure out if he was having a seizure or a brain bleed or something else that caused this.  On the plus side the doctors were quite sure it had nothing to do with his heart, the transplant or the cath from earlier today.  Tim is back on the vent to keep him breathing right and they have already done a CT scan and plan to monitor his brain activity overnight to see if there is any evidence of additional seizures.  Also on the plus side is that he is now able to respond appropriately to yes and no questions.

We're hoping this is just a minor bump in the road, especially since it is such a surprise to not just us but all of Tim's medical team.