Because We Love Her

Tuesday, May 4, 2010

May 4th, 2010 Posted in Daily News Post

Time sure flies when you’re having fun… or not. It’s a fulltime job trying to keep Chloe happy. Just try and imagine, not being able to eat, drink, swallow, produce tears, walk without help, or having your privacy invaded in your own room, or having little kids stare at you because you have a tube sticking out of your neck, or having to leave the room to be suctioned because it’s become too embarrassing to have it done in front of anyone. It’s beyond my capacity to imagine half of this. Yet, Chloe is capable of laughing and having a good time. How, is the main question.

We have our talks with her about being nicer to people, mainly the nurses. But, it’s hard to convince someone when you understand where they are coming from. We know they are all just doing a job and trying to make things better for her. However, it’s hard for her to see anything other than people just bugging her. Even the nights that Dana takes the shift, it’s hard on her. She just wants to be left alone. The only problem with that is the fact that it is possible she may occlude during the night and not be awake enough to clear it. We aren’t ready to take a risk like that.

Last night was Dana’s shift and it started out okay. By 2 am things went down hill. The pulse ox machine wouldn’t stop beeping. This shows the amount of oxygen she is getting in her system. When it drops below a certain percentage the machine beeps. Most of the time it takes a deep breath to bring things back, or to reposition her foot so that the wire straightens out. None of the tricks were working last night, so the sleep was, once again, severely limited.

The day before, her school nurse called in sick so I went to class with her. The day went very well and we actually got quite a bit of work done together. She and I really work well together for some reason. You’ll hear no questions from me as to why. Whatever works, works. My nights with her also work very well. She sleeps and I get some computer work and reading done.

Dana was trashed when I got there today to bring them to the hospital. When I see her like that I can’t help but wonder just how much she can stand. Marathoners don’t have a clue. Other than caregivers who do this type of thing, no-one else can have a clue. If you see her for a few hours or a few minutes you may think, what’s the big deal. Take a couple week shift and you’ll see. It’s a major drain on the system when you pour your heart and sole into giving care and you can’t care for yourself. Our gym has lost its’ pool so we cancelled our membership. Now I’m in the market for a new place to try and get us to. We need a good pool for laps, a hot tub, sauna, nautilus machines and free weights. Classes would be a treat also. Then all we would need is a little spare time and someone competent to watch Chloe, or convince her to come with us and have someone with her. Sure, why not ask for the world?

Today, when we picked Chloe up at school, she was pretty mopey. So as I was getting her buckled up I handed her a new Itouch. Her other one shut down and it’s going to take too long to see if someone at Apple will replace it, so I decided on the upgraded version that has voice capability. She lit up. It’s her main source of communication and her musical buddy.

When we got to the hospital Dana went directly to Starbucks, don’t pass go, for her free coffee. Not that she needed it or anything… Then we went upstairs to see who our OT therapist would be. Beth showed up and brought us to a small exam room. Chloe was very standoffish and wouldn’t agree to anything. Beth was good though and I kept Chloe honest with my comments. Yup, I got hit a few times. It’s part of the OT treatment.

Beth had her take a typing test and then asked her if she’d like to see the gym. No was the standard answer and I said yes. So we went to the gym. Once inside, Chloe saw the multitude of things to do and started to perk up. Beth asked if she’d like to go down the slide and Chloe nodded yes. Then truth set in when she was two steps up the ladder and didn’t know which way to go. She stood there a few minutes and then decided this wasn’t the day to finish that trip. So we came down and Dana found the large padded barrel. That was an instant hit for Chloe. Then we had a flat swing. Then we had the huge ball, and the parallel bars and… We went 10 minutes past the scheduled time and Chloe was having a ball and Beth became a hit. We are all looking forward to next Tuesday.

Next was “tasting with Steve and Carrie.” KFC was on the menu today and Chloe knew it in advance. You should have seen her wheel herself toward the speech office. She was flying! As soon as she got in there she was presented the meal of two drumsticks, mashed potatoes and gravy and another side that escapes me right now. She took a huge bite out of the drumstick and smiled. The P. Mears valve was put in place with her cuff down. This lets her breathe in through the trach and out through her nose and mouth. She lasted over 30 minutes with no problems. Then it was talk time.

She said “yo, Yo Mama, What-Up, Hello Jenny” and she finished the second part of our stick from the Muppets. I go, “Ba da ba dup” and she goes “boop boo ba do bup.” Well, it was reactionary when I started it and she started out with a singinging “boop boo ba do bup.” It surprised us all, but most of all, her. She didn’t get it perfect but it was definitely a singing pitch and inflection. At the end of our session Steve took more pictures of the chewed food and ravaged drumsticks so that he can email it to Jenny, the speech therapist at Emanuel that we grew a mutual closeness with.

By the time we left today, Chloe was pooped and she said so. It was a great workout. Now we have to figure out how to keep it going.

We are back to a nurse night tonight so we are hoping the pulse ox machine will behave and Chloe will sleep like a baby.

Colin was recommended, by his voice instructor at school, to participate in the European Tour next year. It’s a stretch to think he will be able to pull it off but it’s got him thinking. We told him he’d have to work like no tomorrow all summer if he expected to get the money to go. We don’t have a figure yet, but by looking at the schedule, it won’t be cheap. This is an ideal opportunity for Colin start honing his money-making skills. I guess we’ll see how much he wants it.

Now it is my hope that everyone will sleep well tonight. God knows we all need it.

Be well,
Ron

  1. 27 Responses to “Tuesday, May 4, 2010”

  2. By dana watts on May 4, 2010

    Chloe was sick most all last week….stomach type virus. Talk about pilings on. She wasn’t able to be active in much and needed more detailed care with phone calls to Docs for recomendations witwh her feeding schedule and more.

    We had a loving friend drop off dinners tonight and that was so perfectly timed. She could tell we were all ‘pooped’from the day.

    I wonder too. About keeping up the pace. Then it occurs to me and the answer is clear. Until I can’t.

  3. By Kari, Make-A-Wish on May 7, 2010

    You should all be so proud of yourselves and the way that you are making strides every day to keep going, to keep improving, and to keep smiling. I find great inspiration in Chloe’s resilience and attitude as well. I’m sure there are a great many moment of frustration that go alongside those happier times. I love that the words spoken this week were “yo yo ma, what’s up?” Oh Chloe! 🙂

  4. By Sarah Koch on May 8, 2010

    I’m with Kari: my admiration for Chloe — for every one of you who is devoted to helping Chloe — is boundless.

    Ron and Dana: yep, finding yourselves another health club is KEY. I hardly need to point out that you two need a break, whenever you can get it, and that — as Chloe discovered, working with Beth — a great physical workout shakes things up in such a positive way.

    Colin: GO FOR IT!!! I firmly believe this is going to happen, and that you deserve to be a part of this tour!!! Please keep us updated, OK?

    Best,
    Sarah

  5. By Regina on May 10, 2010

    Chloe. why all the attitude to the caregivers and school nurses? I wish I could have their jobs – they work so hard and love so much.

    Its a lot of money, but I think Colin can do it! get to thinking about ways you can earn earn earnover the summmer.

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