ChloeWatts.com

Sunday, January 17, 2010

Here’s a lil’ blog for you tonight as Sunday is a slow day.

Overall it was a good day. There isn’t any activity on Sunday so it’s up to whomever is at the hospital to keep Chloe active. Sandy was the one for today so Chloe got a lot of her homework for school completed. We should just hire Sandy rather than go to the ½ hour stints at Emmanuel School.

When I got to the hospital today there was activity to get Chloe ready to sit in her wheelchair. So I said I’d do it for the nurse. Nurse Darlene had not been involved with getting Chloe up so she yielded to my offer. Of course Chloe would have rather just hung out in bed but that wasn’t going to happen, even though she wrapped her left leg around the handrail of the bed. Her playful nature was revving up. With the wheelchair in position I had Chloe sit up so we could stand and pivot into the chair.

As Darlene had not seen this before she kept asking Chloe if she was okay. Her stats were perfect and so was her color. She was nowhere near being in trouble but Chloe took over from there. Keeping in mind that it’s her right side that is weak and wonky and her left side is pretty much in control, she needs most of the support on her right side. Well, as she was sitting there she bobbled her head around and threw herself onto her left side and onto the pillow just to have fun seeing Darlene’s reaction. The panicked look sent Chloe into stitches.

After a long laugh by her she all but sat up by herself and let me do a stand and pivot into the chair. I used very little support to get her in the chair. She is full of pranks even at this state.

She sat in her chair and emailed and played computer games for about an hour and a half until Dana walked in. She was definitely happy to see Dana, and visa versa. After getting some more things from the car it was time for me to go teach a class.

Once back home I had an email telling of more RT troubles but that, happily, Vicky was the overnight nurse again. Dana must have had some rest because she didn’t hesitate to stand up for Chloe’s rights when the RT pulled attitude on her again. I’m not exactly sure what the problem is but there is more attitude flying around that place than needs to be, especially at these prices. Tuesday’s meeting will be interesting.

Be well,
Ron

Saturday, Jan 16, 2010

Chloe had quite a bit of secretions today and they were pretty thick. It’s a concern, as I feel there is a cold going on at the same time she has a staff infection. She is also up a lot more now so that will bring secretions to the trach more often. She handles it better than we do I think.

Saturdays are lighter than weekdays so we fill in the gaps. Dana was with her all morning and went to PT/OT with her. I wheeled her back to the room for her speech therapy. That is more about testing the sensory nerves in her mouth but swishing soda or tasting sour, etc. I thought I saw her tongue moving a little more today.

When I left to teach my class Dana wheeled Chloe around the unit. It’s their first laps of the stay. They even visited the Starlite Room before going back to 3502. She is also spending much more time in the wheelchair. The more we can get her up the better.

Her leggings were not tight enough so she did pass out at one point today during “homework.” As soon as they raised her legs she came back okay, but I’d rather not have her go away at all. It’s not fun to watch.

Sandy and Chloe were together most of the afternoon and night. Dave stopped by for a visit and I’m sure Sandy was able to get something to eat. Chloe has been emailing today also. I’m sure they found a place for the new MJ poster that Daniel sent her. She loved the note attached and lit up when she saw the face.

Dana was set up for a massage this afternoon. It was so needed and turned out to be just what the doctor should have ordered. Then she went home for a peaceful night in her cave. When she’s there she just wants complete alone time, no calls, no emails, no visitors, and no bells and whistles going off, just quiet. There is no wondering why on my part. She says she’s over stimulated. I’d say that is an understatement.

I’ll be over after church tomorrow morning and spend the middle of the day with them. I have another class Sunday night so I’ll leave before dinner. Sunday is even lighter than Saturday so the extra time spent with her is something we both need.

Be well,
Ron

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

Thursday, January 14,2010

With the type of days we’ve had recently, I’m hesitant to say anything, with fear of jinxing it. But, I’ll take a chance. She slept well last night and the morning went well with Vicki as our nurse and Sandy on the ugly shift. Dana and I arrived before noon because we knew the wound nurse would be here to do some more silver nitrate on her granulation of the trach site.

Before the procedure Chloe received some versaid to keep her pain level down and it also takes away the memory. Ted was our wound nurse and he was a perfect fit in this room. He had a very similar goofy sense of humor and, as luck would have it, the procedure didn’t hurt Chloe at all. Ted was very careful with her and explained everything well before doing anything. He also told jokes, made Sesame Street impersonations and showed Chloe a fun science project. We finished with a trach pad change and all was well. There still may be a little granulation down in the trach area but we couldn’t see it.

We were a little behind schedule for PT/OT but not bad. The transfer to the wheelchair went well and all the transfers in the gym went very well. She stood for over five minutes at a walker, while hitting a beach ball and throwing a soccer ball. She had spotters VERY close but she needed little help. She’s wobbly but determined to make all this work. She sat without Michelle holding her for a long time and then even put her hands in her lap to show us she could balance.

After that we had speech with Jenny. It’s that part where she gets to have some food in her mouth to see if she can move it around and taste it. Then she spits it out through her suction tube. It was pretty successful today with her getting a little movement of her tongue. She has to be able to move the food all around her mouth so it can go into position to swallow. The throat will also have to be up and working well before real swallowing can happen but we are moving in the right direction.

Next was our time at school. We went to the room for school and it was being used. So we walked to another and it was being used. We finally went to the third choice and we rolled up to the table and plugged the equipment in. Chloe has many pages of homework but the teacher asked her if she wanted to do those and Chloe said no. So they ended up with the teacher holding a book and Chloe reading it…. For 20 minutes! We need tutors! I can’t see anything productive coming from what happened in school today. There wasn’t a game plan and then the teacher let Chloe make the decisions. We didn’t even have a room and it took 10 minutes to get set up for a 30 minute class. Something needs to change there.

Next we went to see Dr. Martha about Psych. At the same time Patty and four-legged Jake showed up. Jake ran that hour pretty well. We also worked on Chloe’s progress board. It’s a project to show Chloe just how far she’s come since December 2nd.

Back to the room we got here in time to have Barry and Heather meet us at the door. There were more Christmas presents that were delayed in route. Barry brought his guitar as requested so, with Jake on the bed, and nurses doing their thing, Barry sang “All You Need Is Love” with all of us singing on the chorus. Then, after a discussion of it’s origin, Barry started in on “Puff The Magic Dragon.” Again, all of us sang along, including Chloe, who mouthed the words. It was a great visit.

Vicki is on again tonight so we are expecting another quiet night. Dana has already asked that the Tylenol be dropped for tonight and Dr. Shih will possibly make a decision tomorrow to discontinue both. Chloe hasn’t had the muscle aches that she’s had in the past so we should be able to do without meds.

I’ll be making a run to See’s Candies for Dana tomorrow. I just have to see if I can wait until I go to Albany to pick up another order of Chloe Peace Shirts or if I’ll need to make an emergency run to the hospital so Dana doesn’t have withdrawals.

Dana and Chloe are in bed watching Gray’s Anatomy, like they don’t get enough hospital drama. The RT even popped in to make sure when it was over so she wouldn’t interfere.

So that’s our day. Hope you all had one at least as good.

Be well,
Ron

Wednesday, Jan 13, 2010

Hum… I forgot to do the blog tonight. Go figure. Guess it was because Dana and I finally got a night out to dinner for the first time in a month and a half. WooSong and Larrys never tasted so good. It took all night to wind down though. Chloe really doesn’t like to see Dana leave… and visa versa.

Wednesday started out with a bang and never stopped. Respiratory Care was in before 8 am and Dana just got out of the shower. It was a little tricky with that combination but things got resolved well. Then Chloe’s day began and continued, and continued, and continued. She had lots of PT/OT that continues to show improvement. She stood for over 5 minutes today! They measured her for her ankle brace so maybe she will be able to stand without much help after that is made for her.

OT worked with her hands a lot and she wrote quite a bit with her right hand. It gets better each time with the words more recognizable each day. Her pinch is coming along as well and I notice her trying to use her right hand more and more. She says it’s her right forearm that is most of the problem. It’s very strange how the nerves work!

Speech was fun for her again as it’s her only chance to have food in her mouth. They are working on her tongue and trying to regain movement in it so food can be moved from the front of her mouth to get ready to swallow in the back. This is a process most of us take for granted but it’s really a huge process. After the tongue gets working well, then there is the throat process that actually needs to be taught to work so she doesn’t aspirate when she swallows. During her swallow test I reported she had not aspirated anything. That was inaccurate. She actually did aspirate a little but it was suctioned right out and they ended the test at that point.

She had visits today that lifted her spirits. Two of her best friends visited and then and adult good friend, Cathy and Kodak… the little furry friend… showed up. Four-legged friends brighten Chloe’s spirits better than any two-legged friend ever could.

By BINGO this afternoon she was pretty wiped out. Although, Sandy and Dana decided to make her go pick her own present out after the first game. They loaded her in the chair and wheeled her down, with O2 pole and all, to the game room. She picked her presents and played the next two games there… and won. There was a problem with the mist so she ended up needing to be suctioned a lot by Dana but they trip was made. All three of them were wiped out by the time they got her back in bed.

When I arrived to pick Dana up, Chloe looked like she had run a marathon. It was a good kind of tired from my perspective. Tomorrow her schedule looks a lot lighter, starting in the afternoon. Maybe everyone can sleep in for a change. Sandy has the ugly shift again.

Regina was to come down next week but she has been pretty sick herself so, wisely, she has opted out of the trip, knowing it would be a bad idea for her and Chloe. That put Sandy on edge as she needs a break. I think Dana has comforted her enough about coverage here that she will actually take time off and not feel tooooo bad.

All in all we had a pretty good day again. Every day that we don’t have a crash tends to be huge as far as I’m concerned. Dana did remind me tonight that during the meeting she was presented with a disabled parking permit form. That brought her down, as she doesn’t want to consider that possibility. We see Chloe operating on all cylinders very soon. So I reminded her that any short-term help is good help. Long-term is as well but won’t be as needed.

Be well,
Ron

Tuesday, Jan 12, 2010

It’s great when I can report a day like today. Chloe slept all night and Dana had a good night as well. The nurses were all very quiet and gentle so as to not wake anyone. Then the morning followed suit.

PT/OT went very well with Chloe standing for over 3 minutes with only 25% assistance needed by Michelle. Everyone is very impressed with her strength. Soon we will try a brace on her right ankle and calf to help stabilize her right leg. It’s felt that she may be able to use the parallel bars or a walker better with the support.

Chloe’s favorite part of the day was at speech where they gave her some red vine licorice to chew. She was able to chew it a bit and then spit it out. There was one panicky moment when she couldn’t find it in her mouth but it was just in front of her bottom teeth. All this is aimed at reactivating her tongue and sensory glands in her mouth and throat. These are essential to her being able to eat.

Our meeting went well today with some good views being brought up and some suggestions that are going to make the days go by better. We do have a good group of health care providers here and this is a good hospital. We are on high alert being it is our Chloe at the receiving end. So we tend to make a little noise whenever we feel it is needed. As I said in the meeting I hope nobody is taking this personally. This is all about Chloe and assuring she receive the best possible care.

Woops… pizza ad just hit the TV and Chloe was salivating. It’s her hardest part of watching TV and it’s about all she cares about recovering as an ability, to eat.

Dave asked about time frames again today and it seems that the plan is to still keep her as long as Chloe can be insured to stay. That hope is to have us here into February. Our hope is that we stay just as long as is needed to get her mostly independent. She is so determined to get things working again in order to get out of here ASAP. She also just wants to be able to have cake on her birthday. It’s the 29th.

Be well,
Ron

Monday 1/11/10

Last night was a challenge with bells and whistles going off most of the night. It wasn’t known what was causing it all but Chloe’s stats were a problem… or at least lower than they had been all week. About 5:30 am it was determined that someone had weaned her off the oxygen but nobody knew who and there weren’t any doctor orders for the weaning. So that accounted for many of the interruptions during the night.

After such a restless night Chloe was up by 9 am. I didn’t arrive until 2 pm and they were in PT. Chloe was standing at the parallel bars, with Michelle and two helpers. She did over 2 minutes… twice! Then it was off to Psych and an hour of brainstorming how to make this stay any better.

Right now she and Dana are in the bed watching Oprah. Of course, within the first 20 minutes there were three interruptions. They made it through it though.

Sandy had the ugly shift again and didn’t leave here until about 3:45. She says she got a little sleep before 9 am but that’s not much of a consolation. She and Dana apparently hit the wall last night and just started cracking each other up with silly stuff. Better than the alternative I’d say.

We are expecting a good night. We’ll let you know.

Blessings,
Ron

Sunday, Jan 10, 2010

Another semi-remote report tonight as I have been wrapped up with classes in the morning and evening but I did get to go to the hospital in the middle of the day. Chloe was looking pretty well today but she is really congested. And now we are told to hold off on suctioning her unless she REALLY requests it. Apparently it can create more mucus by suctioning too often and she has the staff infection, which adds to the mix. On top of that she has an eye infection. One thing after another.

I emailed with her a few times today. I told her I hoped she was having a good day. She reminded me that a good day in the hospital is a bit of an oxymoron. I told her every day she makes forward progress is a good day for us. She then wished that I would have the best day of my life this upcoming week. She’s sharp!

When I was at the hospital I was asked to blow up the beach ball that Patty Brandt got for her. The guesses were 22, 17 and 13 breaths… I said 7…. But it took only 4 ½. Being a saxophone player had something to do with it. We then proceeded to put the ball in every awkward place of the room, so I got my yoga in today as well.

Dana and Sandy were busy on the laptops so it was just Chloe and I left to bounce the ball off their heads and knock things off the shelves. Hey, if they want to sit out on the fun… My trip to the hospital today was definitely in the timeframe of a visit. I had to leave in about 2 hours to go back to Wilsonville. So I picked up the dirty laundry and dishes and a few Peace Sun shirts that were ordered and I was on my way.

Karen Preston has dropped by a few times and is quite a bit of help. She is setting up a website calendar to have people sign up for help at the hospital and with meals, etc. This will be loads of help.

Annette, Chloe’s sitter was able to come by yesterday and brought Molly, Chloe’s good friend. It was a good visit from what I hear. She sure likes the little visitors. She hopes to have Rev. Barry and Heather AND CJ sometime this week. We’ll figure out what night will work.

All in all we have had a fairly good week. That really sounds funny to say when we are all wiped out, sore, grumpy and stressed. I guess “good” is a relative term.

Oh yea, Jeremy posted some new pictures yesterday. You need to scroll down from the News Blog in order to see them. They turned out pretty well.

Be well,
Ron

Saturday, January 9th, 2010

This will be short and sweet tonight as I wasn’t at the hospital and I’m starting another Financial Peace University Class tomorrow and have been working on that all evening.

Dana told me things were going pretty well at the hospital today. Saturdays are usually the start of an easier two days for Chloe. Of course easy for her is very different from easy for us.

Dana’s big concern at this point is Colin. We all have sensed it but actions have confirmed it recently, he’s confused to the point of being upset about the lack of attention he is receiving. He and Chloe are So Close to Dana and have had her attention for 14 and 11 years now. Colin now has to fend for himself much of the time and sees Dana only an hour or so a few days a week. He was to spend the night with her tonight but opted out of that because his Dad’s house has a big screen TV and high speed internet. It beats dial-up and rabbit ears all the way.

Many of you have offered to do things with Colin, but I’m not sure that’s the answer. Having more time with Dana would be ideal for him but it’s not as easy as that right now and he doesn’t understand, as he only sees Chloe in the evenings when she is doing pretty well.

We will be investigating options for helping him cope with the situation. He is a very important part of this family and we seem to have missed some things along the way. My other family is suffering from all of this as well so I can relate in both directions.

There is an effort underway to organize more help and support for the family and the hospital stays and assistants. As soon as I have enough information about it and understand how it’s working I’ll pass it along. In the meantime we appreciate all the individual efforts so many people have made on our behalf.

Blessings,
Ron

Friday, Jan 8th, 2010 PM

The day was better than average with the major problem being Chloe needed a lot of suction throughout the day. This is either because she has a cold or that she is working more and it is bringing more mucus to the surface. In any case it’s very important for anyone visiting to remember that her immune system is fragile and even a small cold or runny nose, or cough or sneeze, is not a good thing for her. She is also growing a staff infection in the mucus so they are assessing whether to use antibiotics yet or not.

Her OT/PT went very well today. She was standing, with two assistants, and did a little beach ball work. That wears her out fast but it’s probably one of the best things for her. And having her workout in the afternoon was probably the key ingredient. She just isn’t a morning person, even in the hospital. And, a noted plus was that her heart rate went to 93 at one point today. It’s back up to 124 now but that’s better than the 150s it’s been at in the past week.

Chloe was asked to swish some sprite today. She really liked that but panicked when she swallowed a little. She was assured that she was fine but they just didn’t want her swallowing a lot yet. Also in the mix was the request for some things to help wake up her in-the-mouth sensory nerves. So, Sandy ran right out and got her some supplies, like lemon sticks, and assorted stimulants requested. She sure takes care of the immediate things well.

Colin was able to have dinner with Dana tonight, compliments of Sandy running out and buying something for them. When I spoke with Dana a little while ago, all four of them were in the room together. Colin was trying his best to pretend to be asleep in the chair though…

Chloe is emailing on her laptop tonight but her eyes have been pretty jumpy. That means she has to close one eye in order to see the keys. We may invest in some stick-on letters that are much brighter than the ones on her laptop. They are sort of a gray on black whereas she needs something like a black on white. We’ll figure something out for her.

All in all this was higher on the good scale than the bad one. The staff likes it when we have good days… we keep our fangs in. There are other parents who spend a lot of time with their kids at the hospital. We are probably on the more aggressive side of protection than most, but we’ve been through it before and just know that things don’t always go smoothly. Thus we like to remind those who sometimes forget something. It’s all about protecting Chloe so I hope the staff all understand.

Be well,
Ron