Out of Sorts

I don’t know if this is a common experience of parents of children with congenital illnesses or if it is just me. I like to call it echo stress. Every time we have a surgery or major procedure, it progress as follows: First you hear about the need for a procedure and you schedule it. During this time you are mostly in denial about the stress involved. Plus it usually takes months to schedule a non-emergency surgery. So during this time you know something big is coming up, but it is not any more stressful than planning a vacation.

About two weeks before the procedure, reality sinks in and you start to feel low level stress.

One week out the pre-op phase begins. The amount of stress is proportional to the discomfort of the tests. Usually this requires blood work and x-rays which are fairly tame. This time, the pre-op required 4 days of fasting. It was not pretty.

Then there is the day of admission. This usually involves getting IVs and prep for the surgery. This time we had the added stress of a feeding tube. For this procedure this was the single biggest stressor.

Then there is the surgery. When they roll your kid back to the OR, you would think that it would be stressful. I actually find it a bit of a relief. For a couple of hours, things are out of my hands and I have no roll.

Then the doc comes out. Stress depends on the success or failure of the procedure. This time it was a success, so it was more of a relief.

This is followed by the recovery room. My experience is that Ethan becomes like a drunken sailor. He is not sure if the surgery has happened and he is literally out of his mind. This lasts for about an hour.

Once you go back to your room, you are in the recovery phase. This can be stressful depending on how well the doctors and nurses manage your child’s pain. This hospital did a really good job.

Finally there is discharge day. This is a happy time, though when you get home everybody basically collapses. My kid bounces back quickly and returns to his normal routine.

This, however is not the end of the parents’ stress. For some reason, several days after it is all over, I can barely function.

Oddly enough, during all but the last stages, I am generally in control and am able to manage my stress. But once my son has bounced back to normal, I become a complete mess. This is where I find myself today. I am going to work. But I cannot focus. On my way to work, I nearly caused not one, but two accidents. I feel like I am covered in plastic wrap. Nothing feels right. I am depressed and irritable.

It seems odd to me that I am able to keep it together during the actual event, but afterwards I fall apart. Guess it is all just part of being me.

This week on planet Earth

This is it, surgery week.  Each of Ethan’s surgeries has come with its challenges.  This time it is that he has to fast for 4 days.  He can have liquids, but I cannot imagine that making much of a difference.

Over the weekend, we took him to Hershey Park.  Today Jenn is taking him to our local water park.  He is allowed to eat whatever he wants today.  20 Oreos?…enjoy.

I am a bit sad, but this surgery is going to make a huge difference in our lives.  For the first time in his life, Ethan will be able to manage his own medical issues.  Not that he won’t need help, but doing and supervising are two very different things.  It may even give Jenn and I the opportunity to be away for a night.  We have only been away one night his entire life.  I suppose it would be better had we lived closer to family, but that is just not possible at the moment.  I am hoping that real healthcare reform will be passed that will allow for a little more flexibility as far as jobs go.

I am rambling.  I used to able to write.  I think my muse was killed in a drive by a couple of years ago.  Oh well, I mostly write to get obsessive thoughts out of my brain.  I do a mind dump and feel better.

Chou!

Some assembly required

This weekend Jenn and I are enjoying a rare treat. We have house guests. We so rarely get to visit home, that when someone from Colorado or California visits it is like a postcard from childhood.

Our friends are my best friend’s sister and her family. They are missionaries from Slovakia, so they are endlessly fascinating. Being a dried up prune, I enjoy watching other people that live their passion.

The dog is sleeping at my feet as I write this. I knew when we adopted the dog that I would like it. But I had no idea how much I would love having a dog.

It dawned on me that we have less than a month until the next surgery. As we approach any hospital stay, heaviness coats the house. Ethan told Jenn that he hated that his body does not work right. When she told me, I almost cried. It is just not fair. However, we do have incremental progress. This surgery will make him a little more independent. So step by step his life gets closer to normal.

Gonzo Week

Last week was one crazy week. Hmmm…where to start. So starting on Sunday, I had to fly to Orlando for a conference. I drove myself to the airport and left my car in long term parking, fully expecting to drive it home when I returned. More on that later

I checked in and went through Security. I rode the tram to the main concourse and realized I had left my Blackberry back at security. D’oh! Luckily after I rode the tram back, a TSA agent was holding it. Back on the tram and into the skies. I had an uneventful flight and subsequent ride to “the happiest place on earth.” I did not get a room in the conference hotel, but I did get one in the nearby Disney Yacht Club. It sounds impressive, but really it is a glorified Holiday Inn. I had the afternoon and evening to explore the boardwalk. Everything Disney is larger than life. The staff is uber friendly…almost sickeningly sweet.

I got a good nights sleep and then started the conference. There were over 3000 participants. I have never attended something on that scale. During my second seminar, my phone rang. It was Jenn, the van had broken down. She managed to get it to the shop. They did a patch job and sent her on her way. Two days later…it croaked again.

The rest of the conference was uneventful. Some of the seminars were good…others??? Well public speaking is not everyone’s talent. On the last day, I split a cab with my coworkers to the airport. There flight was two hours earlier than mine, so it gave me time to shop. Unfortunately the plane broke down (I sense a theme). Yada yada yada…8 hours…home…no car…wife had to take it because of broken van. I took a cab home.

Next day at work was…work. We picked up the van and they “thought” it was fixed. 20 minutes later, the transmission gave out. They wanted 3k to fix it. I laughed. I was 3 payments from being car payment free…but it was not to be. I traded in the van for $750 and I was glad to get it. We got another Altima. No more vans for me.

Other than that, it was an uneventful week.

Narcissistic me??!

http://www.flickr.com/photos/benjamin67/sets/72157618933620631/

Cutting Up

As is usually the case with the medical profession, Ethan’s July 7^th surgery dated got bumped. It took us 3 weeks to get another date. The new day is August 7^th. Waiting waiting, always waiting.

Our vacation plans were goofed up, but I am sure we will salvage some time. Now I just need to quietly slip back into denial.

Ta ta for now.

On Graduation

Tis the season of Graduation. It is Sunday morning before church and I am hanging out in the living room with Senior Smoothy Buns, a.k.a. Friday. I am reflecting on a wild and crazy 5 months this year has been. I had a lot on my plate. Work was insane. In addition to the two projects I already lead testing on, I was thrown a third brand new system to manage. Piles accumulated at work. I broke my cardinal rule about work from home. In short it was nuts. On top of all that, I was studying for my Project Management Professional (PMP) certification.

Well the first release of my new project went out the end of April. I took my PMP exam last week (I passed). For the first time since college, I feel like I have graduated. It is satisfying to meet a goal(s). It is even more gratifying to have a breather to reflect on all the madness.

Senior Smoothy Buns

We got a dog.  Jenn finally broke and let me get one.  It took 14 years, but I prevailed.  But don’t let her kid you, she loves him too.

His name is Friday, even though we got him on Saturday.  It was Ethan’s idea and we liked it much more than his other suggestion which was Senior Smoothy Buns.  Given those choices, I think we choose well.

Friday is a year old.  He comes from a breeder, but he is not “show quality.”  Psttthhh.  Phooey on that. 

The nice thing is that because he is older he is house broken (well 90% of the time) and we did not have whimpering all night his first night.  Friday is a bit timid, to put it mildly.  I think he may have been neglected by the breeder.  He was shaking and cowering the first half of the week we got him.  Since then he has really warmed up to us.  He put on weight and started acting more like a dog.  He and I go for walks several times a day and he is a good heeler. 

Today he is mad at me cause I took him to the vet.  They put unspeakable things in unspeakable places.  Oh well, it is all part of being in a family.

The next trip the vet he will hate me even more.  He will likely bark in a soprano voice.  Awe nuts!

SB is out the door

So the project that has been all consuming in my life has gone into preproduction. That gives me a bit of a breather for awhile.

I hate that when others cannot be bothered to plan and meet deadline, I am left to clean up the mess. I basically end up throwing all of my resources into resolving the “problems” and let the rest of my life go horribly out of balance. Marriage, family, friendship, self they all go on the back burner so that work can take priority. It is stupid really. I end up propping up the people who are incompetent and causing the people around me to suffer.

Such is the mess of modern life.

Lawrdy Lawrd

Oh my, it has been a while hasn’t it. I have been buried in work and training. It is still not over, but it is getting better.

So what is up with me? Glad you asked.

Last Tuesday, Ethan had his latest Dr visit. They were concerned about the growing discrepancy in his leg length. There are a couple of mid-evil procedures that they could do, but we are not “there” yet. So I will push it out of my mind.

Work has been going extremely well. So at least I have a job. Sadly, it has take its toll on the people in my life. I get home and I just want to veg. But vegging is not exactly healthy for me or the others around me. I am going to have my meds checked.

On the happier side, I think I made a new friend. I have precious few of them, so I am always glad when a new one happens along.

I am going to start going to Mass on Saturdays not because I am thinking of converting, but because I hate my Sunday church. I hate contemporary worship…OK, so sue me. So I thought a little popish high church might do me good.

That is all for now…hopefully I will get back in the swing of writing.

TTFN