Wednesday, August 17, 2011

The Good, the Bad and the Ugly

The good thing is that we didn't end up with any infections while we were on our first real vacation in years. I feel like the world is getting even with us. I suppose things happen for a reason. I think I had a breakdown of sorts (it happens in my world) and ended up talking to my pastor, my doctor and another priest all in one week. This life isn't always easy to cope with. Many times it seems surreal to me. I don't know how other people cope with having two chronically ill kids. Maybe it was God's way of making me slow down and seek advice. The stress with sick kids never goes away.

Joseph's anxiety and meltdowns affect our entire family. His OCD spikes before any of his procedures and it can make life really quite miserable. It hurts to say it, but it is an ugly truth of living a life with chronically ill kids. We don't live in that elusive land called perfect. Anticipating the stress overload may be just as bad as making it through the stressful hospital days.

For the last three weeks, Joseph has been battling an infection on his toe and we've managed to avoid being admitted for IV antibiotics. Two different antibiotics failed, then we spent time in the hem/onc clinic getting x-rays to be sure it didn't spread to the bone and getting it cultured. The infection spread on the first two antibiotics. Started a new antibiotic Friday and it continued to get worse on Saturday. Our doctor in Cincy asked for the 24 hr culture report, which I forwarded right before we started driving, not thinking he would do anything until our appointment on Monday. Sunday was interesting! I checked my email on the road and had an email to call the doctor on his cell phone. He called in a script and I picked it up in Charleston, WV. He wanted me to pick it up and not wait until we got to Cincy. It is still infected today, but looking much better.

As hospital days go, yesterday was one of our worst ever. The only prayer I could pray was the name of Jesus. Being in the hospital is very surreal. The boys were in rooms that were far apart, I mean, who does that!? Oh, here is a mom with two boys having bone marrow biopsies, let's put them in rooms that are far apart and watch mom run. One nurse even laughed. Joseph went into the OR first. After an hour, I knew something was wrong. The first doctor messed up the biopsy site and they had to call in a second doctor to do a second biopsy. He is extra sore today. Sean is thankfully, doing okay today.

The stress hangovers are hard to deal with. Hard to explain, but anyone with chronically ill kids knows what I am talking about. It is a balancing act, really. Waiting for results and trying to forget the horrid days at the hospital. It is difficult trying to tuck it all away, pretending it doesn't exist and going about daily life as if everything is normal. Showing up at piano, football practice and even Mass is hard. It is difficult to conceal a heart that has been overloaded with stress and anxiety. Somehow, we (hopefully) manage to appear as a normal American family.

My mood today: on the outside everything appears to be normal..... On the inside, it all just sucks.

1 comment:

Lisa said...

Oh, Pattie, I cannot even put into words how sorry I am. I don't even know what to say except that I'm here and I have a good ear and a sturdy shoulder.

Much, much love and prayers, my friend!