One week down!

Well, it's been an interesting week! I think the best way to put it, in all honesty, is to say we are "hanging in there." At least that's become our rote response when anyone asks...so don't be surprised if that's what you get too! But despite the challenges of this situation, we've decided we are in fact, doing a damn good job.

Most of the headaches of the past week actually had more to do with Dad's equipment, not actually Dad himself. A lot of things arrived late or not at all (and still have not...), are the wrong size or wrong item altogether, or were just crappy quality and don't work (ahh yes, the hospital bed with a hand crank that breaks off mid-turn...that's not frustrating at all.) And yet despite all of this, he is incredibly patient with us and he's doing really well!

Now that he's home we're able to spend a lot more time with him, obviously, and because of this we're able to see more signs of progress. When he's awake, he talks constantly. Like before it's not always clear, but it's much more often. When I put him to bed last night (naturally he was wide awake, go figure), he start counting for me! Sometimes in his speech therapy sessions we ask him to count with us to ten, so I think that's where that came from. He's also starting to move his right arm voluntarily, outside of the posturing tone. Prior to this he wasn't moving any of his limbs voluntarily. He also makes appropriate faces in response to the conversation around him and answers yes/no questions more often. I've probably said this about a thousand times over the past 3 months, but I'll say it again...slowly but surely we're getting somewhere.

I don't know if I mentioned in my last update that they took Dad's trach out before he was discharged and it's healing beautifully (still looks a little funky to me, but Mom claims it's healing "beautifully," so we'll go with that). The fact that his lungs, not to mention all the rest, have recovered so rapidly from such a devastating assault reminds me how well he's doing, and that every bit of effort that Mom and I are putting into taking care of him is toward the goal of his full recovery, not just keeping him comfortable.

Thanks for the love and support over the past week...much needed and appreciated. Goodnight!

Home Sweet Home

Well, as crazy as it sounds (and is, really), he's home!

It's been really nice to have him here, and Toby's been lying by his bed or next to his wheelchair most of the time, just like we knew she would. It's been quite an adjustment; figuring out how to set up and use all the equipment that's been delivered, splitting up his feeding and meds schedules, improvising physical and occupational therapies. Mom and I won't be able to leave the house at the same time anymore, things like that are going to take some getting used to. According to her, it's like having a new baby...a really big one on lots of medications, I guess.

It is good to have him here, and not have to drive an hour to see him. But it's intimidating to know that at this point his progress pretty much depends on how we can advocate for him. We are going to do our best to make sure that he doesn't lose the progress he made while at CareMeridian, although he won't receive physical therapy and occupational therapy at the same frequency or intensity that he got while he was there. It seems crazy to me to send someone home in his condition, and we pushed as long as possible to keep him there, but it is what it is.

And so, moving forward, our goal is to get him to a point where he can go to acute inpatient rehab. In order to be eligible for that, he has to be able to handle at least 3 consecutive hours of physical therapy and consistently follow commands. It might take a few months to get him to that point, but he's definitely on his way.

Now we're looking for a wheel chair accessible minivan, we're looking into getting a tilt table, and I'm sure many other things that we'll discover we need in the next couple months. So far things are working out, and most importantly we can tell that Dad's definitely happy to be home. Hopefully the familiarity of his surroundings will contribute to his progress, on which I will definitely keep you updated!

Homecoming

Hello all! About time for an update, eh?

Well it's been a busy week, to say the least. The biggest news recently is that we now have a discharge date from CareMeridian...and it's this coming Wednesday, the 18th! Although it's sooner than we would have liked, we're excited to have Dad home. And this time we'll be prepared. With lots of help, work is underway to "handicap" the downstairs bedroom in our house. It'll be a little bit of a time crunch this week, but we're much more prepared than a month ago! Hopefully he'll be ready to go to an acute in-house rehab facility sooner than later, but until then it looks like he'll be having therapy here at home, or on an out-patient basis somewhere nearby.

The other news is that chances are his trach will be out by the time he comes home. As I wrote last week, he's been downsized as far as possible. They've now plugged his trach, and if he tolerates that for 72 hours, they can go ahead and remove the trach all together. We are really hoping he does not come home with a trach, as that would substantially increase the level of care we'd need to provide, so we're keeping our fingers crossed.

Mom will be starting back to work on September 7th, and I'll be starting classes here at Moorpark (only twice a week) this coming Tuesday. It will be nice for both us to have something else to concentrate on, and it shouldn't be too difficult to care for Dad. Luckily he's bearing weight on one of his legs which makes his transfers easier, and I'm getting better at doing it by myself (never thought I'd say this, but my dad actually weighs less than me now! Ah!!). A lot of what we'll be doing this week is learning how to care for him on a daily basis; feedings, feeding schedules, transfers, physical therapy, etc...hopefully NOT trach care. We'll see.

It's been an interesting summer (and you can imagine what I mean by interesting), but Mom and I are hanging in there, and Dad's condition is slowly improving. We've really appreciated the support we've received and it really will be nice to have him home. Some days are better than others (as his visitors yesterday surely noted), but that's what we've come to expect out of his recovery process. It is what it is.

I'll try to keep you all informed and updated, this is going to be a pretty crazy week, though, so be warned: he may be home before my next post!

Catching Up!

Alright, it's been a while, lots to catch up on, I'll just jump right in!

So last we left off, Dad was starting to talk. I'll go ahead and revise what I said earlier and admit that it's probably more like 99% of what he says that doesn't make sense. But he's still talking a lot, and every once in a while something connects somewhere and he makes sense. He seems to have an easier time with automatic phrases than with things he has to come up with on his own, or when something requires too much thought. For instance, if we prompt him with "Simi...," he has an easier time saying "...Valley," than when we ask, "Where do you live?" Sometimes he surprises us though, and can answer questions correctly. It's hit or miss, but he's getting there!

In other news, we've downsized his trach to a 6 (after which we'll move to a 4 and then he'll have it removed completely), and he's doing really well! This new trach is also fenestrated, meaning there are holes in the outer canula, making it even easier for him to use his vocal cards and cough through his mouth.

We did end up taking a couple "field trips" last week, first to the ENT to get the go ahead for downsizing his trach (obviously that went well!) and then we also took a trip to St. John's for a blood transfusion. For some reason Dad was a little anemic last week, still haven't determined the cause, but he's doing much better since the transfusion.

Last week we also ran into what will most likely be the first of many challenges with insurance. I won't get into too many details, but the bottom line was that they didn't feel Dad was progressing "fast enough" to warrant staying at CareMeridian, and wanted him to come home ...last Thursday! Well, needless to say, he is still at CareMeridian, mainly due to the progress he made last week, but it's clear now that this is going to be a constant fight from here on out. He's now progressed far enough that someone from the acute rehab center in Northridge came out to observe him. He's not quite ready yet, but she definitely thinks he will be in the next couple weeks! Nice.

So to sum up this delayed update, it's been a challenging couple of weeks for us, but Dad is doing well and that's what really matters. We're also working on getting the house ready for when he does end up coming home; next time they try to take us by surprise we'll be prepared!

Hope this finds everyone well! I'll update soon, promise!