Friday, January 29, 2010

He's home!!!

Brought Rickie home yesterday. I spent two days on the couch in his room - the only really bad part of the U of M hospital. It is about 5 feet 10 inches long, and I'm about 4 inches longer than that...

But, Rickie was doing well, and this time none of the other ailments that often accompany an exacerbation, like weight loss or diarrhea or a fever was evident and he was already getting better, so we brought him home. They set us up very well, and to be fair, my wife now has the regiment down, so she knows which medicines to provide and when, etc. He still needs IV's, but she can now do that herself, so we can free up the bed for someone else's kid. For the first two days, Rickie did not like it, but after about the third day, he changed his mind. He went to school at the hospital with their in-house teacher, found some new friends (interns and volunteers) to play video games with him, and was generally feeling more comfortable. So, he asked if he could stay a couple of more days, but we had to decline.

Swam three miles today - first two were pretty slow, but then I started to feel better and did a 28:30. That is still very slow, but it's my third mile and I'm old...

We're all feeling pretty good right about now - Rickie's on he mend and home, and the sun was shining - even if it was 10 degrees when we awoke this morning.

Wednesday, January 27, 2010

Hanging in There...

I am sitting with Rickie right now - trying to get him to eat more. One of the issues with cf is weight loss, and though Rickie is doing OK, we need to be vigilant about making sure he stays that way.

This is a great hospital. Volunteers stayed with Rickie almost the entire time I was gone for meetings today. I got back at 5pm, and he was playing football (Madden 2006) with one volunteer. As soon as he left, another young girl came in and has been talking to him on and off for the last hour or so.

We are eating right now - but it is tough to get him to eat. And when he does, theoretically, it doesn't "stick" inside - so he just passes it without getting any of the nutrients from it. He takes enzymes to break down the food, but he still needs to take as much in as he can. Another odd characteristic about cf is that the kids need as much protein and calories as possible. So "eating right" means eating as much as possible. It doesn't make sense to me entirely, but I have now been schooled by a number of people who I respect and who understand cf far better than I, so I am willing to go along with it.

As a result, Rickie can eat ANYTHING he wants. Ice cream, junk food, sugar, etc. Whatever it takes to get calories in his body... McDonalds is considered health food for him...

I didn't swim today. I'll go tomorrow. Sitting here makes me want to get in the water and just pound out the laps. It is interesting to me that my reaction to all this is to want to swim even more - not sure how that was learned or how you can teach it. I am starting to get antsy because I missed today. And of course, my back telegraphs me little signals that tell me I need to be in the water soon.

I read recently where people who are unemployed or underemployed are in greater danger of getting unhealthy because of inactivity. The theory is that the depression that often accompanies underemployment causes a lack in desire to stay healthy. Wow. I think swimmers really skew these numbers. Seems to me a lot of people I know who swim do more rather than less in periods of anxiety or stress. The perfect balance - sort of...

Tuesday, January 26, 2010


Exacerbation is a term which is applied to cystic fibrosis (cf) patients when they are going though a "problem period". It is not out of the ordinary, but they are also to be avoided if at all possible.

Rickie is sleeping just across the room at Mott's Children's Hospital at the University of Michigan. He has been doing very well of late - partly because of the luck of the draw with his particular strain of cf and partly because my wife and I together are extremely vigilant about his treatments, his medicines, and his health in general.

Three days ago we began to notice the cough. Two days ago it became persistent, and we called the doctor. The first nurse suggested we put him on antibiotics and if he didn't get better in a week to take him to our primary care physician. After about 12 hours of listening to the cough get steadily worse, my wife called again, this time insisting on talking to Sue, the nurse we have worked with in the past. The difference is that Sue listens to my wife and uses her information in an intelligent, purposeful way. She said to bring Rickie in - and have him tested immediately. His breathing tests were very low and his x-ray shows material in his lungs. Even in a world class facility, you must continually be your own medical advocate.

Had we listened to the first nurse, Rickie would have sunk far lower in the next 6 days. Instead, he's going to be getting better starting soon, instead of waiting for the disease to take its toll.

So, we should be out of here in no time - like 10 days to 2 weeks and then Rickie will be fine again. We love this Hospital and Dr. Nasr, the woman that runs the pulminary section (and Sue, as I mentioned).

As for swimming, I swam earlier today - 3 miles at a 28:30 pace. It went very quickly. For the record, we have a great swimming clock at the DAC (Detroit Athletic Club - It is a wall-mounted scoring clock with large red numbers. I can see it clearly during my first breath after my flip turns. It has clearly spoiled me (as has the DAC in general)...

I thought a lot about Rickie when I was in the water today. It sometimes doesn't seem fair to me that he has to go through this. But then I realize that it is what it is and that the best we can do is to keep loving him, and keep working with the national cf organization to find a cure, which is where this blog comes in. We will be running our fundraiser again this year, in the first or second week of August. Our goal is to have 2 chase boats and perhaps 10 people swimming. With the exception of the carpal tunnel brace on my right arm and numbness every morning in both arms, I am absolutely ready to go right now. It is funny - the older I get, the more hurt I play.

And as long as I am on that topic, there are a number of people who know what I mean. There is a woman who is a fabulous glassblower near Detroit who suffered a horrific accident and who just keeps pounding away, regardless. She is an inspiration to me and to others. Another guy I just met in his late 50's at the DAC, has broken or torn everything you can break or tear and he just keeps going. He climbed Kilimanjaro last year, expects to climb more this year and is competing in triathalons until his achilles gives out - again. But he doesn't stop. I tell my kids that when you get older, you learn how to get around the injuries you have. "Don't you hate the fact you can't run like you used to, Dad?". "Yeah, but that's why I swim distance now. I found something I can still do."

We joke about wheelchair races when we're 90. I can see laying incapacitated in a bed at 100 - looking over at my roommate and competing with him by seeing who can lift their head more times. I can't imagine ever giving up. Slowing down? Maybe. But stopping? NEVER.

If any of you Masters swimmers have gotten this far, please consider joining us next year. As swims go, this is pretty easy, actually. Both these first two years, we have all gotten out of the water every 3 miles or so for a 5 minute break. "This ain't the English Channel, boys", says our captain, Mike Stevens. I may try to do it non-stop this time - we'll see. But typically, the other swimmers do anywhere from 4 to 8 miles along with me, in 1.5-3 mile shifts, though I expect at least two others to do the entire distance this time around. The hardest part is the flies, I am told, which is the real reason I do the entire distance.

Seriously, I do it because it helps me prove something to myself, it gives me something to keep my mind focused on, and it makes me think I am doing something to help my son and those afflicted with cystic fibrosis. I don't like feeling helpless, and this makes sure that doesn't happen.

So, to Mike Stevens, Greg McDuffee, Mike Hutchinson, Derek Weaver and Greg Erne, I say thanks again for helping me feel like I am making a difference. And thanks to everyone else for your moral and economic support. If you'd like to help build the medical fund for Rickie's health care costs - that's great. If you'd like to donate to the national cf organization ( to help find a cure, that's great too. It's all good.

Monday, January 18, 2010

Finished December - made the 75 miles for the month, then took a little break. It's the 18th of January and I'm only at 20 miles - I'll end up for January between 40 and 50 somewhere. Having a little problem with what appears to be carpal tunnel or something going on with my arms - mostly my right arm. Doesn't hurt too much when I swim, but certainly makes typing tough.

Not much to report - Rickie is doiong extremely well, by the way. He made it through the flu season (or at least the first part of it) without major mishap - although everyone else in the house was sick at some point. We all got our flu shots at a neighborhood medical clinic in Detroit, off Mound and 7 mile. One of the nicest experiences I've had in a doctor's office. The people were wonderful, and there was NO line...

So, no swime flu here, apparently, but we've had every other kind. Stomach, respiratory, etc. Well, it's over now, and I'm back in the water. I am seasoned enough now to know that I can't get back at it for at least a couple of days. Even after I feel fine again, I need to wait one or two more days - or I can relapse. Have done that many times before..

Hope everyone is well.