Day 15 Morning Update

Scott had a GREAT night!

Isn't it weird that 15 days ago, we'd never have thought about being so happy to have Scott open his eyes and follow some commands?

Or be so excited to hear the doctor say his chest x-ray looks fantastic?

Or be so thrilled to have the doctor say he might not need the tracheostomy at all anymore?

Or be so glad that he did a breathing test on his own for 2 hours?

Now, obviously these are great things but as we've learned from all this...it is just one day at a time. But, we're happy about the beginning of this day! Scott will be on antibiotics for a couple more days and is still getting his new feeding tube placed today. Let's just cross our fingers that he continues to improve so he can come off the ventilator soon.

~Betsy

Day 14 Evening Update

Can anyone believe that today marks the end of two weeks since all this started? We start week 3 tomorrow and I honestly don't know where the time has gone.

Here's the breakdown of today's events.

There were decisions made today to help Scott that you should know about.

1. He is getting a new feeding tube place tomorrow. Right now, he's got a feeding tube going up through his nose, which can be uncomfortable and I think can also get prone to infection. So, tomorrow, they are placing a new tube, using imaging/radiography, to place it directly into his small intestine (I believe, not his stomach - I will make sure). They will leave it in for 4-6 weeks, even if he doesn't need it so that a callus can form. That way when they take it out, there's no chance of leakage.
2. They are going to be doing a trachestomy on Friday afternoon. I will be posting more on that after it happens.
3. He had a blood patch done today. This is the first time I've mentioned this because it was something we weren't sure they would be doing or not. You can read more about it by clicking here. It went well and they said that it may or may not help, but there was really no harm in doing it.
4. His MRI results showed some swelling of his brain stem. The neurosurgeons said that this is to be expected, but it's not the best thing to happen. They are doing everything they can to minimize this pressure, including giving him some more Mannitol . Just a side note here - they were giving him Mannitol quite a bit over a week ago and haven't really had to give him any since his LP last week. I had asked, 'if you know this drug really helps his brain swelling go down, why can't you give it ALL the time?'. Well, that's where the lovely PKD comes into play. They don't want to give him too much of anything that may damage his kidneys. Arghhh.....
5. His CT scan from this morning showed a slight increase in swelling (yet another reason for the Mannitol) but I think this is to be expected. I remember the nurses telling us that it can be a roller coaster ride....lots of ups and downs.

Whew! American Idol is on and I'm going to go sit down with Farmer and try to relax for a bit. As always, more tomorrow. :)

~Betsy

Day 13 Mid-day Update - (MRI TODAY)

Update to this post....Scott is probably just finishing up having an MRI today (3:00).

Sorry this post is late this morning....I think the main reason is because there hasn't been very much change since last night.

He had a restful night. Had a breathing test this morning for about an hour and only had slightly raised BP and HR with that. The breathing test is done by turning off the ventilator to see how he breaths on his own. We're pretty sure that even though he does a pretty good job with that, we're still looking at having a trach placed this week. This will help him transition easier to breathing on his own. It will also make him more comfortable when he does wake up. Again, could you imagine waking up to having a tube down your throat and not panicking?

He had a CT this morning and that came back fine. The swelling is going down and the brain is 'settling' back into where it needs to be. No major changes and pretty much where the surgeons figured he'd be.

One of the main doctors (the internal guy - he deals with everything else going on with Scott) wanted to get an MRI soon...so that may be today. I've gotten pretty used to them telling us they want to do something and then it doesn't happen that day due to one thing or another. So, if he has an MRI, I will give more details afterwards. I will give more details of the tracheostomy (tracheotomy is an incision into the trachea (windpipe) that forms a temporary or permanent opening which is called a tracheostomy - I had to look up what the difference was in spelling) later also.

I can't remember if I'd mentioned another thing that's been going on and that's his blood count. He's got anemia right now and they've been keeping a close eye on that to determine if he will need a blood transfusion. This is still a possibility but Diane said that his blood count is up today...so that's good. We'd obviously like to avoid any procedure we can. I really don't want to see him have horse blood and start 'neighing' all the time....just kidding.

As always...more later. :) Thanks for reading!!!!!!!!

~Betsy

Day 12 Evening Update

Couple things going on today...

Sedation:
Scott is off of sedation today. :) This is a good thing, only he's not responding the way they'd like him to. As of last night through this afternoon, he was harder to wake up than he was this weekend. The nurses/doctors said that the increase in his temperature makes his body work harder and that could be why he's not waking as easily. Also, the amount of sedation he was on and how long he was on it could be playing a role in that.

EEG: He was having an EEG when I got there this morning. They want to make sure he didn't have a seizure last night and rule out if that could be why he's a little harder to wake up. The neurosurgeons have to read the results and that could take a little while, so once I know, I'll update.

ICP Sensor: They took out the little sensor/tube thing-a-ma-gig in his head today. That's a good sign that the swelling in his head has gone down. His head even looked more concave than it did this weekend.

Two main things we need for him here:
1. We need his temperature to regulate and be normal. He heals so much faster without a temp.
2. We need him to wake up easier and be more responsive. The neurosurgeons did say they are happy with how he is responding neurologically (pupils reacting good, tracking with his eyes when awake, and squeezing their hand).

One of his best friends from high school, Jake, asked us last night if we get to call him the 'Booginator' now that he'll probably have a metal head. Hmmm...we'll have to see how he likes that. LOL!

~Betsy