ChloeWatts.com

Tuesday, March 16, 2010 – 6 days at home!

March 17th, 2010 Posted in Daily News Post

It’s a brand new ball of wax! Being home may bring a new form of healing but, in the meantime, it’s bringing a new meaning to the word exhausted. Between Chloe, Dana and me, we probably get a full night sleep… every third night. Who would have guessed the workload of looking after one little 11 year old girl could be so vast?!

Here’s a typical day. 9 am, the night nurse leaves after keeping us awake all night by walking on the squeaky floor just above our head, so that she can look in on Chloe, who has been getting tube fed and vital signs all night while listening to the machines going off or just plain running… like a freight train down an antique set of rails.

We have been up since 6 am waiting for our turn to go get Chloe ready for school, which is only three hours right now. At 9:10 Dana yells for me from the bathroom. Chloe is on the verge of passing out. She is sitting on Dana and I needed to get her feet raised to get the blood back to her head. It worked but it was a scare for Dana and Chloe. Chloe freaks out when Dana panics. We’ve suctioned Chloe a couple times by now as well.

At 9:45 the bus with the wheelchair lift shows up at the front of the house. Keep in mind we are at the bottom of the hill from the school… about a quarter mile. However, with all the equipment and the chair it takes three of us to load her up and get her to class. The “at school nurse” meets us by 9:30 and we get Chloe and her four bags into the bus.

For now, Dana is at school with Chloe along with the nurse. I spelled her in an hour so she could get something to eat. When they had left I stayed at home to meet with a utility person who had work to do at the house starting at 8:30 am. At least I was able to get some cheerios.

The kids at school went nuts seeing Chloe. Wheeling through the cafeteria everyone was either waving or saying “Chloe’s Back!” She sat at the end of a table of her friends and showed off her computer text to speech program. The only problem… have you been in an elementary school lunchroom lately? You can’t hear yourself think much less hear a computer program.

By 1:15 we were back on the bus having danced between the raindrops. Then it was the long 30 second ride to the base of the hill. We unloaded Chloe and all the gear and made it into the house fairly dry.

Dana was at the house when we arrived and had received and returned a bunch of phone calls. So much for catching a small nap before we got back home. Our friend Larry called to say he’d be over with the speech machine he thought we’d like. So he and his daughter came by to get Chloe started. It’s a neat little machine that should be so much easier than taking her full size laptop to school every day. We need to cut down on things to take.

That being said, there is a misinterpretation of the orders given by the doctor that we will have to straighten out. Do we need oxygen and a pulsox at the school? This would mean more equipment. The way we read it is that the doctor has given us the responsibility of determining if she really needs it there. We know she doesn’t but we need to be sure of how it’s written for both piece of mind for the nurse and legalities for the school.

It seems I’m still battling the problem of the blog. There is still some fear about how we watch over Chloe without a lot of regard as to a person’s ability or qualification. We decided long ago that if we saw something we knew needed to be addressed that we would do so. To stand by idly would be a disservice to Chloe and is a breach of ethics for us. Unfortunately, sometimes this leads to hurt feelings. Hopefully everyone can be adult enough to store their EGOs away for the sake of the mission. We aren’t intentionally cruel to anyone but we are fried and on high alert to the best care we can give her. If we are short with someone it’s not intentional… or is it…

All this being said we don’t know how we can keep this up for the long term. Because it’s now 3:30 or so and I’ve sent Dana to get a nap. I rearranged Chloe’s room to fit the equipment better and set up her 4 pm feeds. At 4 pm I hooked her up and she started her homework. At some point here I’m on the phone with Qwest getting the computer to work right. That was about 30 minutes I’m sure.

About 5 pm and Dana was back upstairs in a fog. She tries to do something and forgets before getting started. Chloe continues about her business. I’m in the kitchen cleaning the stove and doing dishes. Dana tries to get some things done in the living room. Time moves through the day.

More phone calls for Dana. Her speaker phone is junk upstairs and it’s hard to hear who has called. If the messages don’t get through just right I don’t know what to tell you. One person called and gave me a name. He said he knew Dana from High School and hadn’t spoken to her or the family in a year. She didn’t recognize the name I wrote down so I could have been off by a country mile. Emailing through the website contact page is sometimes best. Too many calls is Too many calls. I even got one from the night nurse supervisor. Even though I have full authorization through the hospital to discuss and work with Chloe’s case, this person wouldn’t even give me a message for Dana. She didn’t get called back.

At 8:30 I run to the pharmacy only to find that the insurance information is, once again, screwed up. So I got one thing we needed and I was off to Fred Meyer for some food options. Basically milk, bread, cream sickles and lettuce. Back to the house and Chloe loved a little bite of the cream sickle. We all live for the day she won’t have to spit it out after tasting it. She so wants to swallow it, but can’t yet.

At 10 pm I set up the night feeds and medicine. Chloe was headed for bed and would get the feeds over the next hour and a half. At 11 pm the night nurse would show up and Dana would spend 30 to 60 minutes briefing her on the day. Tonight is a new nurse so it will take some time. Our bedtime will be about now, 1 am or so.

Recently I’ve admitted that, although I’ve been through the healthcare for and death of a wife, two parents, and two girlfriends, this past two year period has come to break me. It came to me about three weeks ago that I flamed out. It’s hard to describe and even harder to admit to, especially with all Chloe is going through, but I’m just hammered and running on whatever it’s called to get the job done. I’m not the comic relief I have been in the past for sure. And I’m not the person you want in front of you if you want to complain about anything.

Dana is worse off and has more to do. What has helped her a lot is all the support from people wanting to help. Meals have been a God send. By the end of the day she says she doesn’t even want to open a can of soup. So when the meals have been delivered she can, at least, keep nourished. For all of you who have been able to participate in this effort… and others… we thank you from the bottom of are hearts. Those of you at Celebration Church have been amazing. Barry and Heather have been so much a part of our healing. We are blessed to have such a wonderful place to look forward to going back to when we can. Let no-one take anything away from the light our CC spreads.

Be well,
Ron