Tag Archive for kids

Almost 36

I just saw Logan Lucky (2017), grabbed some Taco Bell on the way home, and am now watching some Ozark (2017) with my awesome wife. Birthdays seem less and less important each year. I think that’s one of those “getting older” things. It also seems like a lot has happened this past year regarding my health.

I ended up in the hospital, again, with breathing issues. Official diagnosis was acute asthma exacerbation and acute respiratory failure. I continued to have trouble with oxygen levels dropping with activity and started seeing a pulmonologist specializing in pulmonary hypertension. I was immediately put on lasix, that drug which makes you pee a lot, to get fluid out of my system and started the tests. I’ve had echoes, stress tests, stress echoes, right heart cath, and will soon have a stress right heart cath. The doctor is pretty sure I have exercise induced pulmonary hypertension.

I have also complained for a couple years about my oxygen dipping below 90% for a while. This has always been attributed to the obstructive sleep apnea, but I was finally able to have it tested. An exercise desaturation test had me right at 89% which is just above the magic line for needing supplemental oxygen. A few months later I had a walk test, which is a much more simpler version of the previous one, and my oxygen dropped down to 81% while simply walking down a hallway. That earned me the label of chronic hypoxemic respiratory failure and I’m now on oxygen 24/7.

With all the breathing and oxygen problems it has been hard for me to do what I’d like. It’s difficult to watch myself slowly become less and less able to do what should be normal. I’d love to go to work everyday. I wish I could walk around the zoo all day with my kids. It would be nice to go outside and not have to worry about pollen counts, people burning stuff, or exhaust clouds from the mini-racetrack three miles down the road. I wish the cold air didn’t make my breath catch in my throat, and it’d be awesome if anything over 75F didn’t make me sweat profusely. Oh yeah, and don’t get me started on humidity. The oxygen has definitely helped. I can go see a movie and not feel sick by the end. I can ride in the car for a while and not feel exhausted and out of breath. I don’t have that starving for air feeling like I used to constantly have.

I feel the worst for my kids. I’m not a deadbeat like my father was, but it’s not like I’m able to do what I need to do with them and for them. To them I am seem normal though. They haven’t known me to be anything else but chronically ill. They aren’t confused as to why I don’t always go places. They know I can’t go to grandma’s house because she has cats. They don’t expect me to stay outside with them for long periods of time. They don’t ask me to play outside with them. Instead they go with me to doctor visits. They sometimes accompany me to the hospital for my injections. They know not to touch my drawers of medicine or play with any of my durable medical equipment. My three year old always apologizes if he steps on my oxygen tubing because he knows that might make it hard for me to breathe. I feel blessed with their patience and kindness towards me.

Oh, and I got a state issued handicap placard today for my car. I am now officially disabled in the eyes of the government. I used to have an issue with that label, but I got over it. I even got over myself enough to attend a convention with the family and allow my wife to push me around in a wheelchair the entire time. There is no way I could have been there without the oxygen and the wheelchair. My doctor is very against me having the handicap placard because he is certain I will cease all exercise. He says having a placard does something to you brain that makes you think you are disabled. The only reason I pushed for it was because the parking services people where I work are so difficult about allowing me to park in a semi-close location. I either pay the standard parking fee and walk half a mile, pay an extra $400 and walk about a block, or get some sort of handicap access. I have an ADA accommodation to be able to use handicap spots on campus, but the parking people still make it very difficult to receive the handicap sticker each year.

Well, I’ve most definitely complained enough for now. My life isn’t all that bad. I have a lot to be thankful for. You should also go see Logan Lucky if at all possible. It’s pretty awesome. Halfway through the movie I had already decided I’m buying it when it’s available.

Children and Chronic Illness

I am chronically ill, and I have two children. I don’t like admitting I can’t always take care of them, mostly because it is true. Fortunately they are very understanding and are kind of used to it. It can become really difficult when I’m solo parenting though.

Last week, my special lady friend was in L.A. for a work conference. Kid #1 goes to school during the day and Kid #2 is with a babysitter during the day, but I’m on duty for nights, mornings, and weekends. I was doing alright until the weekend.

I wasn’t feeling well before Liz left. She was worried things wouldn’t be ok. The kids weren’t adjusting well to mom being gone, but I was doing ok. The week progressed, and I became slightly more and more tired each day. I’m often able to rest and recharge on weekends, but not this time.

I did get a break for a couple hours Friday night and Saturday afternoon, but I was already feeling bad enough that it wasn’t enough for me to feel better. Sunday morning I got the kids some food, turned on the TV, and laid back down. They woke me up at 11, 12, 1, and 2. They were hungry, they were tired, and they needed some attention. I was able to get a family member to come get them around 6, but by then I was in pretty bad shape. It’s now three days later, and I’m just now doing some normal things like: not sleeping all day, eating, and talking to people.

I’m fortunate that my oldest can watch over the youngest and mostly keep him out of trouble. I’m grateful to have family around who can help out at times. We’re all glad to have Liz back, and hopefully I can hack it next time. The kids are also fine, I just wonder if they think all dads are like me.

Helping Grandpa

When I was a kid I spent a lot of time with my Mexican grandfather. The guy is a genius. He is both an electrical and mechanical engineer and worked for Amana Refrigeration for years. When hanging out with him, there were always projects involving wiring, plumbing, carpentry, combustion engines, drywalling, framing, painting, etc. The guy can take a car apart and put it back together without any extra bolts or washers lying around afterward.

Many times I remember helping him and accidentally messing something up. Once I stepped on a sheet of drywall and broke off the end. Several times I knocked over containers or tiny pieces and parts. I would volunteer to help and sometimes give up to do something more “fun” halfway through. I’ve broken tools and equipment on accident, and have become bored on many trips to find materials or needed parts.

Sometimes he became frustrated, but most of the time he acted like it was no big deal. Last weekend I was getting rid of some bank statements and other documents now that taxes are submitted. I got a new paper shredder and naturally Ruthie wanted to help. Who doesn’t love shredding papers?

I gave her a stack of things and before I knew it, the shredder was jammed up awesomely well. It took me 30 min with a long screwdriver to unclog the thing. At first I was frustrated and vocalized it, but then I remembered all the times I had screwed things up for my grandpa and realized it’s not that big of a deal. All I ever wanted to do was spend time with him and try to learn the amazing things he was capable of doing. I wouldn’t say using a paper shredder really compares to re-wiring a house, swapping out a water heater, or replacing the head gasket on a 1988 and 1/2 Ford Escort…but I try to put myself back in the shoes of a kid who wants to help. I’m happy to say I think I learned a lesson in there and Ruthie’s back on the paper shredding job.

The Breathe Easies

This isn’t breaking news, but I just came across some new PSAs geared towards children involving a puppet band named The Breathe Easies.  It’s part of an asthma education program heading up by the Ad Council and the Environmental Protection Agency.  The videos and more can be found at NoAttacks.org