ChloeWatts.com

Friday, January 15, 2010

Just when you thought it was safe to go back in the water… Here’s today’s report based on email information, as I didn’t make it to the hospital today. Bad me… I spent the day getting more of Chloe’s Peace Sun Tee Shirts for her to sell and I didn’t get back to the hospital with Dana’s See’s Candies. Tomorrow for sure!

So, Chloe had a good night and Dana didn’t. She just can’t sleep lately. That’s something I can relate to. We aren’t really sure why we can’t on the good nights or when we are at home. Guess we just never leave the high alert state of mind long enough to wind down. Of course days like today give us good reason to stay on top of our game.

The day saw a Respiratory Therapist cough all over Dana and Chloe and then go into the hall for a full coughing fit. Then he tried to return without putting a mask on… even trying to justify it by saying it was just a tickle. This week Chloe has had the thickest secretions of her stay there. You don’t think Mama Lion would let that slide do you? Not a chance. He put a mask on.

Then there was the “nurse” who sat Chloe on the bedpan… backwards… And left her O2 mask off for 45 minutes while she looked for a trach pad to do a dressing change. Another time Chloe rang for a nurse and no-one answered and no-one came in. This is something I’ve addressed at the meetings two different Tuesdays. I guess Dana won’t get any sleep tonight either and I guess I’ll be bringing it up again on Tuesday.

Frustrations mount. The schooling at the hospital is weak at best. So we looked into getting tutors for her and found out that teachers from Bridlemile can’t come in. There is some protocol they would be breaking with the school district. The principle there is trying to work something out. In the meantime I think we should just list her as home schooled and ask the teachers to visit Chloe. This is just nuts letting a TAG student just sit around without any schoolwork to do.

Okay, so enough complaining. Overall I think we are getting some good care but there sure are some huge gaps that people fall through during the weekend especially. I personally believe bringing it up is a good/bad situation. It’s good because we bring it to the attention of those in charge of making changes. It’s bad because we are perceived as trouble and there have been those who have slinked away from us in fear they would be the next one criticized. It’s really too bad if that feeling is accurate. I hope I’m wrong and that people are big enough to recognize their mistakes and take the steps to correct them and make their work procedures better. Many body actions tell me otherwise though.

My drive to Albany was good for me to be able to have a long, 172 mile, time to think. The only trouble is it went full circle and I’m not sure it accomplished anything. It was good to have a nice talk with James at the Expertees shop where he makes Chloe’s shirts. I was his only customer all day so it was good for me to drop in for him as well. If any of you have any need for tee shirts as fundraisers or family outings, or business gifts or whatever… Please give James a call. He does great work, doesn’t rip anyone off and needs the business. He’s certainly helping us out and he and Daniel are very wrapped up in Chloe’s story.

A quick update… Chloe walked today, about 10 feet, twice, with the walker and people very, very close to her I’m sure.  She won’t take no for an answer.  She’s like the little baby that trys to walk and falls on its butt.  It doesn’t sit there and whine “I’ll never be a walker.”  It gets back up until it becomes a walker.  That’s Chloe, and that’s Colin as well, with his drums, piano and voice.  They are definately related.

Final chapter for tonight. The nurse forgot to give Chloe her benedryl. Dana thought she had but Chloe was the one who knew for sure. She called the nurse for it at 11 pm. 24/7 is not only a nicesity, it’s a necessity.

Be well,
Ron