ChloeWatts.com

Friday, February 26, 2010

This should be short and sweet as I’ve not been there for two days. I think that is a record for me and to say I’m a bit antsy is an understatement. It’s not that I think Sandy can’t handle things, it’s just I’m so used to being there. The hospital has become home in a sick sort of way.

The unit is full now and, according to Dana… loud. There is one doctor from the eating disorder clinic that isn’t my personal favorite, based on our last visit here. She just has a voice and attitude that is like chalk on a blackboard when I’m around it. I guess she was in full form this morning.

With the time quickly approaching for discharge it seems like everyone is trying to make their own goals. If they aren’t realistic goals I’d be happier to extend the date rather than push everything to get check marks in a certain column. We’ll address this during the next Tuesday meeting.

Pudding was the activity of the day. Chloe made it and, I’m sure, virtually ate it. We know this is the last thing to wake up after this type of injury but it would be great to have a schedule when. We aren’t even thinking the two-letter word that could be used. That isn’t acceptable.

School has been working overtime to make sure things are ready for Chloe when she gets back. Tanya must have twisted a few fingers because there will be a bus to pick Chloe up on her practice day, a day there isn’t even any school. We, on the other hand, are trying to figure out our part in all this. Dana has to go back to work sometime and Chloe can’t get herself to the bus or back home. There is the wheelchair, computer, suction machine and IV pole. If I’m not working a day job, that will help. My student load may have to pick up dramatically and move to the SW side of town. The house will go up for sale in the spring I guess.

I’ll be back over at the hospital tomorrow so there should be more first hand information then. To close tonight, here is a list of things we know we will need when Chloe is home: A good hand held shower head, a baby monitor and a plastic queen size mattress pad. If you have any of these please just let us know. We will let you know if someone has spoken up before you. We’d hate to see 50 of each! With the outpouring of love you have shown, that’s possible.

Be well,
Ron

Thursday, February 25, 2010

“Chloe smiled a lot today” was the quote from Dana. It’s also the first day she admitted she slept well. One more giant step. She has also decided the recliner is her new home. She’s in it during the day and the bed is now just for sleeping. Another giant step.

Her days are full but we are seeing less and less of her. We are stepping back and letting her take on OT/PT, Speech and School, all on her own. It’s one more way to get her more independent. We are trying to convince her that suction training for her would be a big plus. I think she feels that would mean we wouldn’t be around when she really needed help. We will have to find a way to convince her that’s not the case. We just want for Dana to be able to take a shower without worrying too much.

Sandy is healthy and rested again so she will be making the blog more now. It will be good to have our third spoke back in commission. She and Dana spent time with Chloe this afternoon for the first time in a while.

Chloe had another marathon bath today. Lots of splashing and bubbles for an hour. She sure does love those. And she loves getting everyone wet in the process.

Jenny, our speech therapist, handed Dana a two-page preview of what will need to happen in order for Chloe to get her swallow back. It is pretty intense, with electrodes and lots of therapy involved. It’s going to be hard work for Chloe and there may be times when she gets completely frustrated. To combat that there is a game plan being developed.

Our next trach change is coming up soon. We have the new trachs on the way. These are even better than the last ones. They will be better suited for her. Dr. Cuyler will do this change and he wants Dana to watch closely, because he wants her to do the next one. I’m probably after that I suspect. We all need to be able to do it if we are going to be one on one with her at any given time. We don’t expect emergencies, however, that’s probably why they are called emergencies.

March 10th is coming along quickly now so the discharge plans are flying into place. Training is set for Monday and Tuesday mornings with RT. I believe Jennifer will be doing the training. We will learn more emergency procedures and we will also learn more about the machines that will be going home with us. This may or may not happen this week, as the actual equipment will be a little different.

Dana and Chloe were watching Gray’s Anatomy earlier so I didn’t hear from them. They get in bed, hang a do not disturb unless it’s an emergency sign on the door and veg for an hour. Then, I’m sure figure skating was next. I’ll see them tomorrow.

Be well,
Ron

Wednesday, February 24, 2010

Chloe and Dana had a good morning. It always follows a decent night’s sleep. Go figure. The news came in early that everyone was doing fine and I should go to the gym. Not a bad suggestion as I’ve put on 20 pounds since beginning our hospital vigil. Later in the day Dana and I took the stairs up five floors to start our getting back what we’ve lost. We were both out of breath.

It’s funny when people come in the room lately. They look in and see the empty bed and start to leave. Or they ask, she’s not back from therapy yet? You see, there’s a recliner on the far side of the bed and Chloe is so small they can’t see her sitting there. She just sits there with her computer, looking up receipts, playing games or using text to speech. We need to find an external speaker for her computer though as the volume isn’t enough to hear what she is saying without leaning in close. If I’m not mistaking I have a computer speaker here someplace.

The wheelchair company came by, and on their second attempt, fixed Chloe’s chair so she can wheel it about much easier. The wheels were rubbing on the armrests so getting around was getting crazy.

Bingo saw Chloe winning three more games. Dana had to start game one for her until she got back from therapy. After she won game two Dana decided Chloe should walk the length of the hall to get her prize so the two of them waddled off. That left me to play game three for her. When she won that one it confused the game prize giver as to how she could have won and not even had been in the room. It’s all good according to the rules but it was fun none the less.

When I left to come home and teach, Dana was getting Chloe ready to wheel about the halls. I showed her a couple new places to visit so they were going exploring. I also found out that there have been kids who have been allowed up on the rooftop heliport. I’m going to find out whom to contact, as we all want to take that trip. Of course, I’d also like to take a jump on the helicopter. That would probably be a bit more paperwork…

We love it when there are good things to report. Days like today help relieve the stress of being at the hospital almost 1/3 of a year!

Be well,
Ron

Tuesday, February 23, 2010

Sorry I dropped a day of the blog. I guess I was just fried. It was a good day for Chloe and my schedule was full. Also, Chloe seems to be getting happier and I seem to be getting grumpier, as it’s been pointed out to me… and I realize. So a night off isn’t a bad thing. Therefore, if I’ve jumped down your throat lately please accept my apology… if you know it wasn’t warranted.

Chloe has made an emotional turnaround from what I’ve noticed. Probably one of the biggest reasons is the introduction of the bathtub back into her life. She loves her baths and now can actually take are real one. She spent quite a bit of time in the recliner instead of her bed. This in itself is a huge step forward. When she tries new things, PT wise, she puts extra effort into it. She is so determined to leave this place… whole and complete.

Jenny reports that the tongue tip is starting to move a little bit. Side motion is mostly to the right but there is movement. We know there is a long way to go but we are seeing movement in the right direction.

When she needed to get from her wheelchair to the bench today she jumped up and did the maneuver without help and before anyone could help her. You go girl. We’ll watch as you blow us out of the water.

Tonight is movie night, but, I’m not so sure Dana and Chloe will be watching this one. It is the last movie they went to, the night before checking in on December 2nd. The memories may be just a bit more than they want to relive. “Imagine That” is the movie and “All You Need Is Love” became the song they live with often.

We had the weekly meeting today. It went well and there were many good thoughts and reports that came out. Dana’s pass was recognized. Next, the rest of us that will be taking care of Chloe at home will have to have our Pass Days recorded. Dana has even spoken with Colin about becoming suction trained. When Chloe is home Dana won’t be able to take a shower without having someone there to make sure Chloe doesn’t get in trouble. We just heard today that the “at home” nurse isn’t a sure thing. Hopefully we will receive good news about that very soon.

We were asked, once again, about the evaluation sheet they need for their paperwork. It was due when there was a paper discharge and readmit. They want us to say how happy we were with them at that point. Personally I think this is bogus to ask at this point and the paper is written very poorly. Dana and I have looked at it and set it aside time and again. So the one who wants it said she’d give it to Dave to fill out. Whatever. We have been upfront with our likes and concerns. A piece of paper will not change that. I’m sure it will make no difference in the care that Chloe gets or the progress she makes.

From what I’ve learned, the meeting at the school went well and many questions were answered. I’m invited to future meetings. Dana is drained from all the meetings. Between the principles’ office, the weekly meetings, RT meetings, the special meetings with home care nursing, to all the mini meetings, enough is becoming enough. Top that with another night without sleep and she’s done for today. What happened to the day when it was the boss who called the meetings, not the employees?

The day in the life of Chloe and the caregivers is what this blog is all about. Sometimes it can be written just with medical in mind. Other times it needs to include feelings, perceptions, evaluations, emotions, kudos, condemnations, elations and a host of other topics. Some people have asked me to tone it down, some have looked in hopeful anticipation of being written about, others have asked to not be included in it, and others yet are afraid they will be named on a page. Keep reading. I hope your wishes are filled.

Be well,
Ron

Sunday, February 21, 2010

Chloe is getting very good at sleeping through suctioning and I’m okay with that 100%. Now if I can just figure out how to sleep through it myself we’ll be all set. It’s getting better though. She only needs major suctioning about 3 to 4 times a night rather than every hour. In fact today she slept right through to 11 am. Amazing.

I had my paper, my tea, my shower and etc. by 8:30, and then I was bored watching her sleep. Dr. Steve did show up about 8:30 to talk about the night. He’s still uncertain what to say about the thick secretions that start about 11 pm and progressively get thinner over the hours. Like he said though, so much is controlled by the brainstem that it may have something to do with it.

One thing different overnight was Chloe was either having a reaction to something or having bad dreams. I’ve never seen her so animated while she was asleep. It was like she was itching all over and wringing her hands together like she was fretting about something. She didn’t even remember it in the morning.

Before I forget. If you have been one of the many generous folks to bring food by for the overnighters, please let us know if you have a container we need to return. Many of the items are left when we are at therapy and they don’t have names on them. We’d love to get these back to you but have to know what belongs to who.

Dana walked in about 1pm. She spent a good night with Colin and Ivey. They even had a fire in the fireplace. Very cool. And right after she got there Annette and Marie showed up, followed by Tanya Gaddis, a teacher at Bridlemile Elementary. It was a pretty lively visit.

There is a meeting at the school tomorrow morning to discuss what “needs” Chloe will have when she goes back to school. Even though I’ll be filled in by Dana, it would have been gracious of those arranging the meeting to invite me. Based on what they called me it’s obvious they received some very inaccurate information about my relationship here. At least Dana, Chloe and Colin know. That’s the important thing.

The cool thing that happened tonight was made possible by C.N.A. Tracy. There is a choice here of a shower or a boat bath. Well, Chloe is a bathtub girl and tonight she made it be known. So Tracy said, why not. She found a bathtub and even some bubble bath. Chloe had a long soaking bubble bath with a showerhead spraying party that made her day. At home she spends an hour in the tub if we let her. So this was a good reminder that “there’s no place like home,” but there’s sometimes something close.

Chloe and I are spending the night together again tonight with our nurse… Ron. So she will have two of us watching closely over her. What more could she ask. She’d say, Mama… but that’s always her request.

Thanks for being with us.

Be well,
Ron

Saturday, February 20, 2010

Chloe’s schedule was full today and she was in good spirits. I didn’t have any specific reports from Dana so that almost always means it was good but not spectacular. I do know they spent a lot of time in the sun. Chloe even has a little color now. When I arrived at close to 4pm they were both in bed watching The Wizard of Oz. It was actually one of the easiest departures for these two.

Today was Dana’s day to play as if she were home alone with Chloe. She was responsible for everything. So when I got here she set out to complete her last duty of setting up the feeds to be started at 5 pm. She did spend some extra time with our good RT and found a variety of things to do in case of an emergency. She feels much more confidant now.

At about 5:30 Dave showed for his visit so I had an early break. They are reading another Twilight book. About 6:40 I was back on duty… a rewarding duty I might add. She needed a thick suction while I was away but they handled it well.

As soon as I got back she asked for a bathroom break so I got her traveling things ready. When she came out I directed Tracy and her to the chair. I announced that we were going for a walk and Chloe was all for it.

We took off for areas unknown. She wheeled herself for good periods of time until her right hand would get sore and I’d take over. We went to the sky bridge on the third and then fifth floors. Up there it’s high! She wouldn’t stand at the railing there and even wheeling close to the glass railing she was a bit timid. We then went to the locked doors of the rooftop helioport. We decided we need to find someone to escort us up there ASAP.

Then we were off to the downstairs atrium where she motored around the large tree pots. We were looking for a solo wheelchair so I could show her some wheelies but they were being too well guarded. Maybe tomorrow. But we weren’t done yet. Off to the spooky elevator by the café. This elevator reminds me of the first one I ever rode in NYC. The button and numbers gage are the same I’m sure.

We went to the mid-level to look at some really cool black and white pictures of years gone by. Even saw Pres. Roosevelt at the Bonneville Dam. Chloe reminded me she was there last year with her class. I’m sure they had newer cars than what is in this picture. Just after looking at that picture we were attacked by the giant bogger. It came quick but I was able to get it in pretty good time. In any case we were in good shape.

We closed the journey off with our trip to the piano. We spent about a half hour in there figuring out what songs we knew. She’d play one and I’d try to jump in on it and then we’d reverse the order. It’s great to see her trying to make that right hand work the way a real player uses theirs. It’s a fun therapy for her.

When I realized it was just over 8 pm we had to hurry back upstairs as Harry Potter was on TV tonight. We can’t have her missing that. It was bad enough we missed Grays’ Anatomy this past Thursday.

Thanks to all of you for the help, meals, prayers and just plain old fashioned support.

Be well,
Ron

Fri/Sat February 19/20, 2010

It just occurred to me that I have been starting every blog with the night report. How boring. So today I’m starting with the morning report….. She woke up … after a pretty good night…. Only two wake-ups before 7 am. (Gotcha)

She’s downstairs in OT right now and she has been showing her spirit to everyone. We just finished with a very long walk. I’m not even keeping track of how far because it’s full hallways and back again. And her abilities with this new wheelchair are advancing by leaps and bounds. She’s cutting donuts, both directions, trying to run anyone and everyone over, and cutting close to the walls without crunching her knuckles. She’s actually having fun with it. It’s her independence. And when she is not hooked up to any lines she is pretty free.

When I left for My doctor’s appointment she was leaving with Katie for some art therapy on the Sun Deck for an hour. It looked beautiful out there. I was happy Katie agreed to take her there, as the schedule was too full in the morning for me.

Aunt Laura was there after therapy to be with Chloe until Dana arrived. With nurses nearby that works. There always has to be someone around who is suction trained in case she has a need.

That need has been coming at the most inconvenient times lately. It will happen when we are just about to go down for therapy or just before feeds are hooked up or in the can. Never can tell. So that leads us to our bigger problem. When we get to bring her home it will always be a two person job to go anywhere. If she is in the car on the freeway it just won’t work for one person to be in the car with her. If a big thick one decides to block her trach it’s not like you can just pull over and get to her in time. We’ll see. We are in the process of getting emergency procedures in place for the day we do get to go home.

Since I didn’t get to this blog until this morning I can report that, although it was a late start for sleep last night, it ended pretty well. If you ask Chloe how she slept she’ll always indicate “so, so.” However, if you see her performance after a good night sleep you’ll know she really did do well.

Be well,
Ron

Thursday, February 18, 2010

We are in an every other night situation with last night being one of the others. Dana was up every hour with heavy suctioning. Then this morning everything shifted to long breaks between suctioning.

Dana was scrambling to get ready to go home today and I was scrambling to get my computer into the shop, pick up an x-ray of mine and get here to relieve Dana. All in all it worked out in the end. I got here just in time to have Chloe back in the room for her first break.

We went to Speech with Greg and it was Custard and Coke for the main menu items. She is tasting a little more on a gradual basis. This is a good thing as it means things are probably waking up. Jewel was next to get her mitts on Chloe. We headed to the garden for a walk. Greg came along with us and carried her laptop for her.

In the garden she tried the backwards walker a very little and still wasn’t impressed. So Jewel got behind her and helped her walk the yellow brick road in the garden. Chloe is showing more and more moxie everyday. During the walk, she went from marching like a white stallion, to her best impersonation of the scarecrow. I’ve decided, Goofy is her new nickname. There were times she couldn’t walk at all for how hard she was laughing.

After the garden we headed to school with Julie. That went well, even though it was math. We were only there for a half hour before we started out for our adventure walk. We went to the helicopter pad to see if there was any action. There wasn’t but there was a lot of sun. Then we took the west walk and came in through the south side of the hospital. Just inside the door we ran into Dr. Norwood. They had a nice visit but we had lost her communication board on the walk so she couldn’t be as much of a wise butt as she usually is.

Next we started her driving class. I gave her some obstacles to run around in her new wheelchair. This chair is so much easier for her to maneuver. She spotted the gift shop so we headed there. She drove herself around very well. Then we went back out and headed for the piano. She played for a while and then her dad arrived for his visit. I let her show off a bit more and then left them for their time together. The plan was to meet up at the jewelry class at 4:15.

When I arrived at the class she was deeply involved in building a really nice necklace. The intensity with which she was concentrating on using both hands to thread that line through holes in the beads that I couldn’t even see was cool.

We took another walk later and even made it to the café, but Celeste wasn’t working today. We’ll try again tomorrow sometime. We are now ready for sleep. We have a new nurse but she seems pretty good and likes planning the night. Now if everything else works well.

Be well,
Ron

Wednesday, February 17, 2010

The morning started a day of nausea that was a challenge to contain, but it was. Then all the normal routines went without incident or excitement. That’s a plus I guess. Well, actually, there was one excitement. Chloe taste tested the last of her bread pudding and she could actually taste it a bit.

One of the highlights was her new wheelchair. It’s a little sports car compared to the sedan she has been using. She was spinning donuts in the hallway and can wheel it herself easily. The down side is that we don’t have the storage area on it when transporting her to therapy. I guess we’ll figure it out but it’s going to take some thought.

Tonight was a little bit of a fight. The therapists want Chloe to start participating in after hours activities. One of these was scrapbooking tonight. She wasn’t impressed when Dana insisted she go. I showed up in the SB room and Dana asked for some comic relief to get Chloe out of her mood. I did but she didn’t. Oh well. Then she grilled us as to who was the first to suggest she go to evening activities. She said, “They all couldn’t have said it at the same time so who was first?” It was pretty funny but in the end she accepted that we had no idea who said it first but that they all decided it as a good idea.

The only too bad of the day was they didn’t get outside at all. If you didn’t get outside in Portland today you really missed a great day. I even tilled the garden.

The absolute highlight of the day was when Wendy brought a little white polar bear puppy in for Chloe to visit with. Well… actually it really was a dog but I guess it looked more like a little bear. Chloe didn’t want to give it back but I think Wendy’s cousin would have been a bit upset with her leaving her 8 week old at the hospital.

That’s it for now. My furnace is working again. The hospital team is comfy. And the sleepy meds are working.

Be well,
Ron

Tuesday, February 16, 2010

Just a few interruptions during the night made last night better than normal. Secretions have been thicker than we’d like, with a couple blocked suction tubes. Those freak me out a bit when it’s too thick, blocks the 10 fr suction tube, and I don’t have time to grab it before it returns down the trach.

Her schedule was changed so much today that nobody could keep up with it. OT with Kim and Sarah started the day out. She is playing with personality now, so the therapists are really having a good time with her. Speech was second with Christie and Jenny. That’s probably Chloe’s favorite as she gets to taste a variety of things. Her tongue is really doing a lot of moving compared to last week. I see the front sides moving in front of the teeth. Her side to side movement is much better also. I even thought I saw the tip do a little movement. This is what we need for the swallow.

I was here by noon after a dentist appointment with Dr. D and the rest of Dana’s friends. Ivey was happy to see me and get some people time and some back yard time. Chloe was just coming back from OT when I got here. She was pretty smiley.

Afternoon was set with OT, School and more PT until 3:30. All went great. When we got back we took a trip with Mama to the Emergency Room parking lot to visit Mama’s car. The Life Flight Helicopter wasn’t on the pad unfortunately. It was a great day though and the sun was even out. Chloe was diddy boppin all the way out and back. After we left there we went to the Children’s Garden to check out the Tinman’s butt and the rest of the fun things in the garden. Of course the helicopter flew over us when we were there. The kicker of the whole walk was a trip to the piano. We got there just in time because there was a rehearsal of a brass group about to start. Chloe played a few songs and was ready to get back upstairs. She uses her hands well on the keyboard. It won’t be long now…

Tuesdays are movie night, so we were entertained by “Cool Runnings.” Very appropriate for this time of year I’d say. I love that movie and I saw Chloe laughing many times. She has also been reading her books again. This is something I think is a huge advance. That means her eyes are doing well.

She has been very good at getting to the bathroom with help of the walker and Mama or the nurse. There is great progress in so many areas that I’m feeling good about the March 10th target date.

We had our weekly meeting again today and there weren’t any great surprises. She will be on some antibiotics for a suspected “infection of sorts” that may be making her secretions thick. The therapists all spoke of how well she is progressing. There was talk of having us practice a weekend pass in the hospital, but that would just mean Dana would be working without the nurses’ help. It wouldn’t mean Chloe could get out of the hospital, which is our idea of a weekend pass. The suction machine is the big stopper for us getting away. The hospital won’t lend us the one we use here because of liability. I don’t have to agree with their policy but it’s not one that I want to fight. They will look into us getting one from an outside source so we can get out of here for five hours or so.

Be well,
Ron