ChloeWatts.com

Tuesday, January 26, 2010

January 26th, 2010 Posted in Daily News Post

It’s starting to give me a complex… a good one… when I can say, another good night, after I’ve spent time on the windowsill. Chloe slept five hours straight before needing her first suctioning. Then it was minor suctioning on the quarter hour until about 7 pm. Each time she was back to sleep before I was back on the sill. The one cough assist with Sonya produced next to nothing. Everyone was pleased. By the way Sonya, we love you.

At 8:30 Chloe and Sarah went over more self-care. This is another activity that is gauged. How much assistance does she need for socks and shoes, etc. I can’t really tell you how she is doing on this part as I’m vanquished to the hall until the dressing is complete. Sort of like bathroom breaks, only different. In any case she isn’t too pleased about getting going at 8:30. She does a pretty good fake out when anyone tries to get her started that early. No different then when she is at home though.

Next up was a 10 AM PT/OT. Michelle has been our PT since the beginning of rehab and I’ll say that whomever teams up with her has a goal to achieve. I’m really impressed with Michelle. All her OTs seem to be on top of their game when with her. I don’t have enough blog time to name everyone, but you know who you are.

Chloe is on what’s called “the nose” during part of her gym time. It’s an artificial nose that goes over the trach so we can get rid of the tubes and free her up in the workout. Of course, now we are doing bolus feedings, three times a day, and they usually hit some of the rehab activities. Can’t be helped though.

Her walking is looking a tiny bit better every day. And today she worked with an 8-pound medicine ball that was the size of a duckpin bowling ball. It was a struggle for her but she plugged away as usual. She is using her right hand as much as she can.

Next, Jenny had her for speech. Chloe likes this, mainly because she gets to taste food and swish it around in her mouth, before spitting it out. She had some Oreo frosting but I think some of it may have diluted enough to be able to slip past the cuff. I suctioned a little bit of very white material soon after getting her back to the room.

Back in the room she wanted back in the bed before the next PT/OT visit. So we got her set and she asked for her computer. This is such a great outlet for her. It was the perfect Christmas gift.

Dana spent the night at home last night and arrived about noon in the room. As soon as she walked in I thought, oh no. She’s fried. I mean, really fried. She can’t sleep. She can’t eat. She doesn’t want anything to do with people. She is over the edge so I’m trying to make sure she considers more of her own healthcare. It’s bad enough that she has been at that hospital for seven weeks, but she is facing a long, expensive home care stay as well. I’m really not sure what to do about that yet. There are options but they are all expensive and complicated. Bottom line though is we have to find a way to relieve a lot of Dana’s stress. This is why you will find me doing all I can to protect her at every turn. It’s not personal against anyone, and I hope everyone knows that.

At 1:30 we were back down for PT/OT with Jewel… another gem… (Pun intended…) There is a type of stationary bike that they strap her feet to while she sits on a raised mat. This session was only 30 minutes so she walked to the chair and we went upstairs for school. Dana and I were scheduled for the conference during that time.

There was nothing very new during the conference. Everyone likes the progress Chloe is making and there is hope that she will be able to stay in rehab as is. We’re waiting on the government to make a decision….. oh nooooo.

After school Dana and I rejoined Chloe in the room. And then it happened…. Dana and I got called to the Principles’ Office….. Aaaarrrrggggg….. Not the whipping paddle! Patient relations was there to talk to us so we went to …. “The Room”…. Unfortunately it was the same room that we first heard the terrible news last year.

Okay… the dramatics here are a bit much I know. It seems there are some people who are scared to death they will be mentioned on the blog as having done something we didn’t like. Hummmmm…. Maybe they have a point? We have so much praise for so many people who have helped Chloe beat every odd that has been placed in front of her. Person after person has been applauded. There are cards called, Kite Awards, that the patients and families fill out for outstanding performance. Our names are on many of these. The people who have not received one yet have something to strive for. Others can just sit back and worry I guess. Maybe that means they don’t deserve one and should revisit their patient care procedures. Or in the case of one, practices that can appear less than honorable.

Now, I’m pretty good to people even when they don’t deserve goodness. The better helpers are not worried about this blog in the least. In fact, they look forward to being mentioned here. If I were in the position of being recognized in print, and I thought it had anything at all to do with my job, I’d probably be reevaluating my work ethics and step it up a bit. In the long run, everyone will prosper by this. But being recognized on this blog or not… really doesn’t have anything to do with anyone’s job. And we will always speak to anyone we feel is doing something we’d rather see done differently. I do hope that eases the minds of many.

After being released to return to our room, we set up skype so we could visit with my oldest daughter, Kelly and the kids in Wisconsin. It’s great to use this new communications tool. If you haven’t tried it I highly recommend doing so. Chloe and Dana haven’t met this side of my family yet so it’s great to be able to, at least, visit via TV, as the kids see it.

Margaret finished up our day with a visit with Chloe. They are working on many projects, including what to do about Chloe’s 11th birthday on Friday. It will probably be Friday before we get this resolved. It does look like there will be Birth-weekend-days parties though, as not everyone is available every day. Whatever works is good. I just hope Chloe can find some joy this weekend.

I left tonight to teach, so Dana crawled in bed with Chloe to watch Movie Night. The movie??? MJ’s “This Is It.” We had all sorts of people letting us know this was coming, with Chloe being his biggest fan. We brought Chloe to see it the last weekend before the hospital stay, I’m sure seeing it again will be a thrill.

Just received an update from the room. A new RT came in tonight and Chloe squirted him with the “fish.” So he brought her more and she proceeded to squirt Joanna, Josh, Lindsay and Mama. Then she ended up looking like she just had a bath. It’s tough having a water fight when you can’t run!

Bed dancing to “This Is It” was a blast and she was even revved up enough to do some more weight training. Bringing the two of them, Chloe and Dana, back together is great therapy, albeit a bit weird therapy.

Not a bad day I’d say. To tell you the truth here, as I always do, my LOCAL focus is on two people, Chloe and Dana. I’m not going to waste any time or energy on fixing anyone else in the hospital or local community. It would take way too much to do that. So I’ll leave that up to the individuals who feel a bit broken now. I’m sympathetic toward your situation but I am not powerful enough to change you. All I can do is bless you and give you my perspective that worry never solved anything.

Be well,
Ron