Thursday, July 29, 2010

Jocie & Spencer...the Continuing Saga

Jocie just came to me and handed me this note.

Tuesday, July 27, 2010

High Tech

In the last month Miles has had 4 doctor appointments to see different doctors. 2 have been here in town, one in Ft. Worth and the latest one was here in town with a Dr. from Ft. Worth in the Cook Hospital clinic we have on Ambler.

All 4 offices are in the process of going “paperless.” There’s no more charts at the door, checking insurance cards, prescription pads or check out sheets. They’ve all been replaced by lap tops and no eye contact.

The office visits are all longer as the nurses and doctors try to master the program. The visits are longer and more detailed, but less personal. Their eyes are glued to the computer for 96% of the time. I’m thinking it will get better in time when they’re used to working with the program more.

It’s so interesting because I’m getting to watch a new era in medicine take place. The Dr. from Ft. Worth was able to see what the Dr. in Abilene recently did and the notes that he put about Miles’ latest surgery and the complications. They’re all able to see what medicines he’s taking and have all the correct dosages. It’s all very impressive.

At the Cook clinic today I was in a room where they can do “web medicine.” (That’s my own term.) In that room a Dr. from anywhere can “see” you through the web cam. It’s a live feed. There are attachments where the Dr. can see in the ears and throat. They also have some kind of sensor machine where the Dr. can see a certain part of skin up so close you can count the pores in the skin. It’s all very amazing. I snapped a picture for ya.

Friday, July 23, 2010

Tough Day

I was doing the catheter on Miles and all the sudden panic filled my heart.

I’ve done the catheter a lot of times up to this point. Since our last pediatric urologist appointment we’ve been told that we need to do it twice a day. It’s still a little strange that I stick a tube up Miles’ “private part” so he can pee, but it’s becoming routine.

Still, when I was doing it today something came over me. I thought, “Oh my gosh, I’m peeing for him.” He’s now to the point where he will rarely pee on his own. His body has just stopped doing it. His bladder just keeps getting more and more stretched out to the point that it causes pain. When he does pee he only empties his bladder about half way. I have a CUVG to prove it.

Anyway, it’s not the catheter that freaked me out. It was the fact that this is one more thing that Miles can’t do. Then the flood of questions comes crashing back to me:

He can’t sit up, talk, walk, or go to the bathroom. He can’t have clear lungs without 6 breathing treatment medicines a day. His body convulses without seizure medication. His body goes into withdrawals if he’s even 3 hours late on getting his meds. He can’t move his arms or legs without Botox or his Baclofen pump. He can’t swallow even the smallest amount of water while brushing his teeth without choking for 5 minutes and turning colors. He can’t feed himself. He can’t even eat food or drink liquids. He can’t poop without a daily laxative and an enema. Now he can’t pee.

What is left?


That’s all I can think of at this point.

He’s like a baby, an infant. For over 5 years I’ve taken care of an infant.

How far is too far? I never thought we would have to go as far as we have. I mourned when he had to get to feeding tube. It was The Thing I didn’t want him to have to get. I wanted him to be able to eat like a normal person. He enjoyed it until he couldn’t do it any longer. Eating by mouth was physically killing him. He was constantly aspirating into his lungs, which caused the continuous pneumonias.

Oh, I really don’t have a point here. My heart just feels heavy today.

I don’t understand how a few minutes in time without oxygen could change our lives so drastically.

Monday, July 12, 2010

eBay Stuff

Here's a FEW of the things I've sold on eBay lately.

Wednesday, July 07, 2010

Poor Cookie Monster

I cracked up when I saw this. : )