Inch by inch, really.

Sorry, sorry, I know it's been a while. I could say I've been busy...but to be honest, I've just been doing a lot of nothing! Sitting with my dad, watching Ellen, reading here and there, trying with very little success to convince my grandmother that just because she's cold does not necessarily mean that I am cold too and no, I don't want a sweater, thanks (I got a sweater anyways.)

But in all honestly, Nana's 86 years have given her wisdom far beyond mine; and as she likes to say, "Yard by yard, life is hard. But inch by inch, life's a cinch." Uhh, how cute is that? And so damn appropriate.

I'm getting a little off track, but to continue with the update, we are SO happy with CareMeridian. I was a little skeptical at first, but I've been really impressed so far with the level of care the staff is giving my dad and the level of support they are providing us. Every morning around 7, the nurse wakes him up (I use "wakes up" loosely, his sleep cycles are a lot shorter than ours so he doesn't sleep through the night or stay awake all day), gives him a bath, and puts him in fresh clothes. Six days a week he has a PT session and then some days has a sessions with the occupational therapist, on others meets with the speech therapist. Visiting hours don't start until 11am, at which time we usually arrive and start our part. Mom and I try to talk to him and stimulate him as much as possible. We read to him, move his arms and legs, try to get him to follow commands, etc. Then in the afternoon they put him in a specialized wheel chair. At first the therapist thought we would need to order some sort of brace for neck support but after getting used to sitting upright, Dad was able to hold his head up entirely on his own (really, really, good!). Then we can usually take him outside and sit him in the sun...wouldn't want him to lose that ever present tan, right? Although he's not very reactive, and can't communicate effectively with us, after spending so much time with him, Mom and I seem to be on the same page about what we think he likes and doesn't. We agree he definitely likes being outside!

All in all, he seems to be doing well with the move. I'm sure it'll take some time for him to get used to all the activity (after all, at the hospital they were so focused on getting him "not sick" they didn't do much else). So far all things are heading in the right direction, albeit slowly. It's been a challenge to have no time frame, no expectations, no prognosis, but Mom and I are getting through it with high hopes and a lot of laughter (...and a LOT wine...just kidding, Nana keeps that in check).

So after another wild and crazy Friday night, it's time to say goodnight and head to bed. I promise to update again soon. G'night!

New Digs

He's been moved!

We are now heading the opposite direction on the 101, up to Oxnard each morning to visit Dad. He was transported yesterday around 3:30 pm, arrived around 5:30 pm, and all went as smoothly as possible. Mom and I were able to go see him last night and make sure everything was in order. We were lucky enough to get him a private room (initially we thought he would have to share), and everything looks good. It looks a little bit like an older hotel room in a B&B (if you added a hospital bed and a humidifier of course). He has a dresser and a wardrobe and TV. Today they'll put him in his own clothes, probably just a t-shirt and sweats for today, but should be much more comfortable.

When we stopped by last night to see him he seemed much more alert and comfortable than he had in the hospital. It's obvious that he is trying to control his involuntary spasms and I think he's getting a little better about it every day. He gave us a big smile when we came in and it's starting to look like he's trying to talk (of course only sometimes, and he can't with the trach). So all in all, we're really happy with the decision to move him. It's been a good couple of days, just hoping we can keep this up!

Anyone is more than welcome to come see him. If you want to give either my mom or myself a call to let us know, that would be great. Again, he's at a place called CareMeridian in Oxnard, room #4. Visiting hours are from 11am-8pm.

Me: 805-558-7515
Mom: 805-558-3732

(Try to call me first, she gets a little inundated with phone calls sometimes.)

The real thing!

I got a bit ahead of myself last week, but now I can say Happy Father's Day for real! If ever there was incentive to be a good dad, just think about our situation. One of my favorite things is when the doctors and nurses come into the room, check out the pictures and things we have on the walls and say "He must be a really good dad." Yep, he is.

Well I don't know if he knows it's Father's Day (I told him, but who knows), but he is certainly having a great day! He's been nice and calm all morning, opening his eyes from time to time, moving a little. We're having less of the spasms (posturing) and sweating than the past couple of days which is a nice break. No fever to speak of today, but had a low grade fever last night. The doctors that came in this morning said they now think it is a central cause because he is currently infection free. His lungs are also sounding a lot clearer and he's not coughing out secretions as much. They also said his is definitely stable enough at this point to be moved to the new facility in Oxnard. So off we go tomorrow! There we'll begin trying to get him off the trach and start physical therapy. His hands are going to be a particular challenge because of contractures that are setting in. His legs are also starting to lose flexibility which is of some concern. Hopefully the sooner therapy starts, the sooner we can start reversing the loss of flexibility and muscle mass. As always, it's going to be a long road.

Nana arrived safely on Wednesday and I think it's been much more comforting for her to be able to see him. It's also been nice for him to have her familiar voice, "Tommy! Tommy look at me!" It's cute. As my mom and I have starting getting used to, she's adjusting to the "two steps forward, one step back" progression of his recovery. Her patience is pretty phenomenal.

Ok well we're getting ready to sit Dad up in the cardiac chair, nice little Father's Day treat! Happy Father's Day to all you dads out there!

"I'd rather be home brewing"

Just a quick update for the day! I'm with Dad here at the hospital while Mom tries to get some things done at home.

He was moved yesterday to a different unit, as he no longer needs to be on in the specific neurology ward because there really isn't anything more they can do for him in that aspect. His primary doctor is now an internist and the main goal is to get him well enough to be moved. He had a slight fever this morning which came down after another round of antibiotics, but we still aren't sure whether infection is at fault or it's a more central cause. Either way, more antibiotics, just to cover the bases.

Other than the fever he's doing pretty well today. He's been wide awake since mid-morning, going through his now normal cycles of sweating and tensing up, then relaxing. He hates it when I wipe the sweat off his face. Picture wiping spaghetti sauce off a toddler's face with a wet washcloth...that scrunched up "get off me!" kind of face. Honestly it's one of my favorite reactions because 1) it's appropriate and 2) it's really funny (a bit like payback from when I was a toddler!). He's also very clearly trying to control his movements. We are working on getting him to keep his tongue in his mouth when he has stronger spasms; he tends to stick it out. He was also able to keep his arms at his sides long enough for a chest x-ray this afternoon, and keep his right arm relaxed long enough to have his blood pressure taken. I could be wrong (it's all subjective, really) but he seemed to be consciously working to keep them still; the moment each procedure was finished he immediately tensed up, pulling his arms into his chest.

At any rate, I just spoke with his case manager and it looks like because of these fevers, we are now looking at either Friday or early next week for the move to the sub-acute facility. So if you decide to come down for a visit, just remember he's been moved and to check at the information desk before you come up.

That's it for now, looks like I'm a little late for happy hour. Go Lakers!

Father's Day Part I

Sooo, Mom and I definitely thought today was Father's Day...we're a bit disconnected lately, you see. As such we decided we are having two Father's Days this year. I mean, hell, why not?

Even though today is not the official Father's Day, here we sit in the hospital with him, watching a little soccer, reading a little bit of the Sunday paper. You know, we're just chillin'.

And I mean that for real, he is super chill right now. Yesterday and today he looks remarkably more comfortable and relaxed. We've been sitting him up in a cardiac chair, which he loves. His fever is down and his infections appear to be responding to the myriad of antibiotics he is receiving. He still goes through periods of profuse sweating, but as one of the doctors reminded us this morning, his autonomic nervous system is wacky (for lack of a more medically accurate term) and could be the cause of not only that, but the fevers as well. His heart is also doing better. Earlier in the week doctors noticed fairly frequent runs of ventricular tachycardia, which have subsided. His pneumonia is also getting a little better, as he is coughing up a ton of secretions (btw, sputum is my new favorite word) and although they have decreased his O2, his O2 sat remains high. All in all he is well on his way to being healthy enough to be moved from the hospital to a sub-acute care facility.

And speaking of sub-acute care facilities, we've decided where he'll go next! He'll be going to a really nice place in Oxnard called CareMeridian. There, the main goal will be to wean him from the trach and get him to a level of functioning in which he participates in his physical therapy. We looked at a few facilities and decided on this one because of the high staff to patient ratio, it was really clean and new, and honestly, was the least like a "nursing home" that we visited. It was a tough decision, but we're really excited to get him moved. He'll most likely be discharged Wednesday or Thursday of this week, if all goes accordingly.

My Nana (Dad's mom) is coming out to visit this week from Richmond, which we are really looking forward to. I've put the phone on speaker and let her talk to Dad a couple times and his face totally lights up, it's really sweet. Moms are certainly the best when you're sick, so we're sure he's looking forward to her visit too.

That's pretty much it for now, I'll try to update more frequently. This has become less of a daily update than I intended. Hope this finds everyone well and please let us know if you would like to come visit. It's a little bit of a drive (or cross-country flight) for many of you, but Dad is doing well enough for visitors now (OR you can wait until he's in Oxnard to avoid the hellish traffic and $11 parking). Either way it's good for him to hear other voices!

Oh, and Happy Father's Day. Ha.

Mini-hophead (Grant) Update

In case anyone is interested in writing, I'm going to go ahead and post Grant's contact info for Lesotho. We got a phone call from him last week, and he sounds really great! Says it's absolutely beautiful there. He was in the capital, Maseru, when he called but was getting ready to head to the CBT site (community based training), which is about 45 min outside Maseru. We also got a nice email this morning from the Lesotho Country Director saying the volunteers are all settled with their host families and starting their training. Sounds good so far!

He won't have regular access to email during training, so we all have to do it the old fashion way for a while:

Grant Comstock, PCV
U.S. Peace Corps
P.O. Box 554
Maseru 100
Lesotho

(This picture was taken right when they arrived, you can sort of see Grant in the back row, one in from the right.)

June Gloom

Good evening all! Hope this latest update finds you all well and rested from the weekend!

We actually had a bit of a rough weekend, I'll admit. As many times as I've said out loud that I know this is going to be a long, tough process, it's really starting to sink in. Like I said, there were some obvious improvements to my Dad's condition in the two weeks I was gone, but it seems with every step in the right direction comes a new challenge or worry right behind.

At this point, Dad's been hospitalized for almost five weeks. And what's the worst place for someone in his condition (extremely weak, immunocompromised...you see where I'm going with this one...)?? The hospital, naturally. So this weekend was all about infections (picc line, catheter, respiratory) and fevers. Not only do the infections put more stress on his already super stressed body, but we can tell how uncomfortable he is, which has been incredibly tough for us. Luckily after a night of three heavyweight antibiotics and a little Tylenol with codeine (mmm...), he seemed much more comfortable and responsive this morning.

But we should always end on a positive note! His new doc talked to us today and told us, AND I QUOTE: "His latest scan gives us reason to be cautiously optimistic." He also reminded us that we need to be patient, as the majority of the damage they are seeing is to the thalamic region of his brain, which generally means a slow recovery. (But hey, recovery is recovery, right?)

So to sum things up, we are now working on getting Dad out of the hospital. Mom's checking out a few sub-acute care facilities while I hang out with him tomorrow. We're trying to limit his visitors a little while he is still battling these infections, probably until he is transferred to a new facility, but please feel free to contact me or my mom if you want more details.

Ok, time for bed. I need my beauty rest. G'night.

And we're back!

My apologies for the absence of posts for the last two weeks, I was a little preoccupied. Hopefully most of you received the emails my mom sent, but for those of you who didn't, I'll fill you in:

Dad was transferred to UCLA's Neuro ICU two weeks ago yesterday, where he received fantastic care. As usual, he was by far the tannest, most popular guy in the unit. All kidding aside, his treatment was great. His doctor even did rounds through a robot...seriously, a robot. He has shown no seizure activity and his scans are even "improved" to use to the direct quote (apparently this neurologist is a man of very few words, but we'll take it!).

The big news is that he is now entirely off the ventilator, and was moved yesterday morning to a stepdown unit. He's still receiving oxygen (part of the weaning process), but we're really proud that he's come this far. As far as his activity goes, he is now able to smile and stick his tongue out on command. His eyes are open pretty much most of the time, which is a huge change from when I last saw him. He still doesn't track anything, but he does a good job of looking in the general direction of the person talking to him.

All in all he seems more alert than when I last saw him. His weight loss is also a big change that I wasn't expecting to be as drastic, but it's to be expected. He'll be starting physical therapy this week to get him moving again.

Well I am heading down to the hospital now, let's hope there's less traffic because it's Saturday(uuugh I hate the 405)!! I'll post again soon!