Cystic Fibrosis Fatboy — Page 5 — The daily quest to gain weight

Clinic – Fall 2012

October 19, 2012

I just got back from clinic and had another great visit. Basically, my numbers are up, so if you’re a busy person and that is all you need to know, move along with your day. I wish I could, but the rest of you want details, right? Right?!

The big number: FEV₁: 42% – yes, my favorite number. Those of you with better memories than me will know that’s also what I blew in March before we started doing foster care and after I’d started doing daily walks and runs. Then I blew a 38% in June after a full 7 weeks of fostering. I was wiped and had come off a cold. I’m still recovering from the life change of Grandpa’s funeral, the 2,000-mile drive, and lots of hours worked to afford to take that time off… and the cold Boy gave us again.

Other stats of note: my weight was a whopping 126.4lbs – up from 123 in June and several dips into the teens since then – and my gut was proudly rounding over my pants. My O2 was 96%, which is the minimum I’m satisfied with.

Three neat stats from my PFTs are:

My FEV₁ volume is higher than in recorded history at 1.53L
My small airways (25%-75%) are higher than ever in percentage and volume: 0.69L, 17% (13% is my norm).
My PEFR (peak expiratory flow rate – or “how fast can you blow, like peak acceleration in a car”) is also higher than ever in both percentage and volume: 5.98L/s, 70%.

Before I got out of there, I got my requested flu shot, tetanus vaccine, and pneumonia vaccine. I expect to feel like crap any hour now, so I’m going to finish up a small project, get my pay “for the day,” and rest while Boy takes a nap.

Back on the Farm

September 26, 2012

We made it this morning at the bright (not) and early (very) hour of 5:40. Since I got up at 5am to be able to pack all of my stuff and watch Boy while Beautiful finished getting ready, I didn’t fare too well on the drive, but you’ll learn more about that later. Patience, my readers.

On Monday, I took Boy to “Nana’s” house for five hours or so to rest and work on whatever I wanted, so I re-designed this site and felt pretty productive. Beautiful got everything packed and a number of things into the car, but then everything fell apart for leaving on Monday evening.

In the end, we had to make our most difficult and painful decision of our lives – to put Boy in respite care. Respite care is another foster family who takes in other foster families’ kids for up to 12 days… so the other parents get some… respite. We decided that, while it’s selfish in the short-term to hand him off to others, it is better for him long-term to have us rested and for me to be able to grieve next week. We’ve found ourselves not as able to be as patient with him or each other as we were months ago, so this should right that.

Turns out, he’s having fun playing with new toys and being with other kids. Nana will pick him up tomorrow and everyone is coming to our house (because it’s an approved house) to play with him and keep him grounded that he’s not abandoned and nothing is changing long-term. We just had to go on a trip. We’ll be sure to FaceTime with them.

Since we had everything taken out of us through the whole parental permission foul-up of late 2012, by the time we passed Chattanooga, I was so exhausted it was time to pull into a Cracker Barrel to take a nap. I ended up sleeping from just past 8pm to 9:45. We got up, realized they were closing in 15 minutes, and went in to use the facilities and look around the country store to wake up. We found the perfect t-shirt for him, but we held off since we’re in farm country now. I dropped a pin on the map so we can find that store location again on the way back if we’re empty-handed.

I had to take another nap (after several un-called-for rest area breaks to walk) past Cinci and a final walk break just before Columbus. I barely got us here, but I did.

The sore throat that I started to get a hint of Tuesday morning was full-bore by lunchtime and has persisted since. Our theory is that Boy got me sick about 2 or 3 weeks ago, but I had so much adrenaline getting projects done, landing new projects for deposits, and coordinating what to do with 15 contingency plans that everything finally caught up with me.

Now Beautiful has a fever and sore throat.

Visitation is tomorrow and the funeral is Friday morning.

Then we can really let our guard down and recover.

Frustration, I Call You “The System”

September 24, 2012

When we started our foster care training, during the very first class the instructor told us that we will never know frustration like that experienced when dealing with “the system.”

Many times over already, this has been proven true.

We’re split up today with me at Nanna’s house working and writing while she plays with Boy and Beautiful is home packing the car and doing errands so we don’t make Boy worried all day since we still don’t know if we’re leaving.

Our latest saga involves giving Boy’s case manager 3 weeks’ notice that we will be making a trip to Ohio and we worked out what we could do with Boy during that time. Knowing full well about the trip and most of its details other than exact dates or exact time requested, she didn’t say a word to his parents for permission.

Here is is, 1pm with a target departure time of 6pm, and she says she can’t get to their house to ask them (long story about why she can’t call them)… and even when that happens, I’m thinking there is a 2% chance that she can get a court order to take him, unless she has the order made and just needs actual permission.

We’ve contacted our Family Care Specialist (she’s basically our case manager to help us in our dealings with case managers) and she’s seeing how she can expedite things and has a call in with said disorganized person’s supervisor.

I’m thinking that when we return, it’s just going to be time to have it all out in the open with the agency because of repeated last-minute demands and various emergencies at the hand of their lack of planning.

Almost at a Loss for Words

September 22, 2012

This is it. The end.

No, not for me or for this site. You see, my grandpa was looking forward to going to the county fair over Labor Day weekend. He was fine on the Thursday before and alarmingly ill on Labor Day. We got texts later in the week from my aunt that it was time to make arrangements for family to come.

Beautiful and I were just there with Boy in July. The end of July. He was fine! Slowing down – a little hard to see that, but he is 82 – but far, far better than he was last October.

In October, we said our “goodbyes” to him thinking that we wouldn’t see him again. When we left in July, we did a more casual, quick, “see you later” farewell as we loaded up the car.

That is how I’ll remember him.

We decided last year when we traveled to Ohio twice to see/care for him that we didn’t want our last memories of him to be sick, dying in bed, just waiting for the end to come. That is what everyone who is there now is witnessing. Blood pressure has dropped below mine, respirations down to 7 per minute, and unresponsive. This is the end. We were there so often when he was well and when he needed us that we feel like we are preserving his legacy better in our hearts and minds, guilt-free of not being there now, and I know he’s fine with that.

Just fine.

(5 minute break for composure)

We’ll remember him (1 minute break for composure) as the Grandpa who was on the Deere while Grandma followed behind picking up all of the limbs from the “land hurricane” that blew through central Ohio in July. They were outside for hours at a time, just like he was a few years ago.

He will likely slip off into the presence of his Father sometime tonight or tomorrow and we’ll be crying and happy for him at the same time. No more pain. No more suffering. He’s finished his race and he ran it well. I know no more honorable, kind, loving, forgiving person of all the people I know or know of.

The world is losing one of its greatest.

We’ll get a court order to take Boy to his previous caregiver on the way so we can grieve when we get there. The court order means we’ll probably leave Monday or Tuesday night and arrive in Ohio about 24 hours later.

I’ll write more later… when my thoughts are clear again. There will probably be more news then, too.

Update

I am now at a loss for words – good thing I wrote this last night but hadn’t found the photo yet.

We got word around 6am this morning that he slipped away peacefully. It is done. My hero has left the building.

Clinic – Fall 2012

October 19, 2012

I just got back from clinic and had another great visit. Basically, my numbers are up, so if you're a busy person and that is all you need to know, move along with your day. I wish I could, but the rest of you want details, right? Right?! The big … [Read more]

Back on the Farm

September 26, 2012

We made it this morning at the bright (not) and early (very) hour of 5:40. Since I got up at 5am to be able to pack all of my stuff and watch Boy while Beautiful finished getting ready, I didn't fare too well on the drive, but you'll learn more about … [Read more]

Frustration, I Call You “The System”

September 24, 2012

When we started our foster care training, during the very first class the instructor told us that we will never know frustration like that experienced when dealing with "the system." Many times over already, this has been proven true. We're split … [Read more]

Almost at a Loss for Words

September 22, 2012

This is it. The end. No, not for me or for this site. You see, my grandpa was looking forward to going to the county fair over Labor Day weekend. He was fine on the Thursday before and alarmingly ill on Labor Day. We got texts later in the week … [Read more]

Update

Time Elapsed Since IVs