ChloeWatts.com

Sunday, March 7, 2010 – 94 down and 3 to go…

We’re getting close to going home now. Just 3 more days! Dana spent some time today packing up and putting things in the car. And Chloe is getting more energy with the thought of being in her own room Wednesday night!

Our night nurse has been approved with only the paperwork left to complete.
We should have our new wheelchair and walker tomorrow. It looks like the wheelchair ramp is going to be made by Kevin. He acts like he has some spare time, but we know different. He’s just making it happen.

Today was a day of rest for the hospital stayers. Chloe did want to walk to the starlite room to see what was playing on the big screen. The Atlanta 500 stock car race didn’t impress her. However, my suggested ace bandage on the right ankle was a big hit. Dana says it was keeping Chloe’s foot from turning under. That’s what I was after with that suggestion.

The RT tonight got to see one of Chloe’s bad blockages. It wasn’t that close to her blacking out but it was bad enough for someone to see what we have been talking about. I had one I was just about to use the bag on her for. Her lips were turning black. Those are scary.

It was my day off from there today so I can’t give too much color here. Yesterday was really fun though. To clarify something about her dancing… it is done in place. Not exactly break dancing or ballet but it sure was fun to watch. I have video of it that I will try and get on the blog.

Be well,
Ron

Saturday, March 6, 2010 – Four to go!

I love Saturdays like this one. I got to the hospital at 9:15 so Dana and I would get to Colins’ choir contest on time. Of course, as we were trying to leave we had to do a big suction and then Dr. Cuyler stopped by on his time off to talk about the trach change. It was funny watching Dana all but run away from him. Being the driver, I knew we had plenty of time so I wasn’t worried. We got to the school by 9:50 and found the room in a few minutes. Colins’ group was to sing at 10:20.

When we finally were let into the room Sandy was already there. Kevin, Laura and Dave came in just before the group was to sing. When Colin came in he beamed seeing his cheering box seats. He didn’t let us down at all. His solo went off amazingly well and he showed poise and confidence, boarding on cockiness. Good job Colin!

We stood outside in the hall for a few minutes but Dana and I are always way too nervous when we are away from Chloe for too long. We left explicit instructions that if she rang her call button it was for someone to come in IMMEDIATELY, not in a few minutes. When we got back I asked her if she needed suctioning while we were away. Once, she indicated. I asked if they were there immediately and she said “so, so.” I’m glad she wasn’t blocked when she rang.

We had our usual weekend therapists and all were amazed to see how far Chloe has progressed. Some see her each week and some see her every third or fourth week. Lots goes on in a week with Chloe.

Dana went to get something to eat and Chloe and I took a hike, although it lead to the same place Dana was. Then she went one way and we another. I asked a couple security guards about getting to the heliport on top of the building. They said they never bring anyone up there, that they never heard of it being done, but that, if there was special permission they’d be happy to get us there. A challenge was set forth!

Upstairs we went and I asked the nurses to find out whom I’d have to talk with to get us out there today. The rest of our stay is supposed to be rainy. I wasn’t opposed to calling the administrator if it would do the trick.

Chloe and I went for our walk to the other heliport and, wouldn’t you know it, the helicopter came in as we were waiting. It was great and I thanked the pilot for a great show. They waved back and wished us a wonderful day.

We took our west end walk to stay in the sun and came in through the southwest doors to the atrium. There had been a party the night before that we watched and listened to the musical performances. The firemen’s choir was a little hard to take after the National Anthem. Chloe had some eye rolls going on during some of their numbers, but they were all volunteers so good for them.

There was a flyer from the party so I made another airplane for her. This one is my high speed, long distance design. We went to the fifth floor for a launch. It did two very graceful spirals down and made a perfect landing on the floor. You couldn’t have asked for a better flight. Chloe was impressed. Then Dana called and said, “they are going to meet you on the fifth floor and bring you to the heliport!” We were already there. Soon there were two very nice security people with keys to let us out. Dana came running up at the last minute. It was an exceptionally beautiful day and equally as beautiful a view. We took pictures with all of us, security included. All because we asked and believed. Amazing how that all works…

After a good long stint up there above the fifth floor we were back to the room. Chloe had needed the restroom from before going outside so it was a quick in the room for her. After she came out we all had a party. She came out with Dana behind her. Then Dana said, “Show us what you can do on your own.” Dana took her hands off Chloe’s body and she walked about five steps to her wheelchair before Dana reattached. Then she wanted to look in the vanity mirror so she stood there for a while. Then she turned to her right and took a step to the CD player and turned on some music. She danced! She and Dana stood there bouncing and boogieing. Then she took some steps between Dana and me. It was a great distance from anything she has done up to this point, even though it was only about five or six steps. We all clapped like it was our baby’s first steps.

Dana set the yoga mat out for Chloe to try a bit of that. All was fine until she went on her back and a hacker presented. We got her in the chair and quickly got rid of that. It was a blocker but she passed it quickly. That ended our round of movement fun for then.

Bedtime story was our movie for the night and it ends with the song “Don’t Stop Belivin.” So Chloe decided she’d get up and dance, but first we all raised the roof. It doesn’t take much to get her wanting to go. She jumped to her feet and, holding onto my hands, she started boppin. Then she wanted to show off for the floor… but not before getting her blue hat, the one that you can see on her blog.

Of course, once we left the room there weren’t any of our nurses around but that didn’t stop her. We went to the Starlite room and Titanic was on, one of Chloe’s favorite movies. Before the end of disc one we had to suction but it wasn’t bad. We danced back to the room about 10 pm, just in time for meds and feeds. I was off the hook for getting these ready as I completed my “official” 10-hour pass training.

Five feet from the bed I told Chloe, “okay, run to the bed now.” So she did. Well, her feet went that fast but her body moved at the same speed as before. The main problem with her walking now is that her right foot wants to turn on its side. We have to make sure she doesn’t twist her ankle. I’m shooting for a light ace wrap to just coax her foot to land flat. The last thing we need is a sprained ankle.

Everything is settling down now so I’m gonna blow this pop stand. Time to get home and get ready to come back tomorrow. Kitty needs some food anyway. It’s been a very good day.

Be well,
Ron

Friday, March 5th, 2010… last weekend here!

Five days and counting. Chloe is pretty excited, as are we all. Today we started taking things away from the room and it already looks bigger. We are all doing our final touch-ups on what to do when we get home. This includes discharge training for all the adults who will be taking care of Chloe.

Nothing out of the ordinary for PT/OT, speech or school today but we did hear that we should be getting our overnight nurse. That will make life so much easier. Our school nurse was hired but without the overnight one we would have been very strapped for help. Getting Ivey suction trained is a bit out of the question and Kitty, even less.

Our new trachs aren’t going to be in until Tuesday, so we are down to the 12th hour for getting a change before we go home. I guess we are at the mercy of the delivery service. The longer we wait the better Chloe likes it. She got a little bummed out during a long conversation with Dr. Steve, Mama and me about how to help her cope with the change. Long story short she’s choosing to keep it as being very scary for her even though the next change should be the easiest, based on history and the type of trach we will be using.

At 4 pm when Chloe came back upstairs from therapy she was overjoyed to see Mama in the room. It’s been a long time apart for her, although she was in touch and telling Mama to take care of herself.

We took a stroll and w/c drive to the sky bridges today. She let her balloons fly to the ceiling above a banquet that was being held in the atrium. If there hadn’t been security on the 5th floor we probably would have launched our paper airplane…

Chloe has still been getting her very blocking secretions. When that happens it is a trying experience. At 8:30 tonight we spent a good four minutes trying to clear her. We do have backup plans but we sure don’t want to have to use them.

Tomorrow Dana and I will go to Wilson High School for Colin’s choir contest. It’s short but he has a solo in one of the songs. We try not to miss anything he has been doing, especially during these past three and a half months.

Looking forward to the last weekend in Emanuel Hospital.

Be well,
Ron

Thursday, March 4, 2010

We set a record last night. She was up once for a bathroom run but no suctioning for 12 hours! She was getting extra water so I think it thinned everything out enough that it cleared naturally. I’ll be speaking with the doctors in the morning if tonight is back to business as usual. Troubleshooting is a constant here but it’s also rewarding at times.

The schedule was about as full as I’ve seen it. We didn’t stop from 8:30 am until 6 pm, except for 30 minutes at noon.

Kim was impressed with how well Chloe was able to take care of herself first thing in the morning. Picked out cloths, got dressed and tied her shoes. If you had told me she would be doing this a month ago I would have called you nuts. Gym rounds was next. That’s where the doctors and therapists converge on the gym area to talk about and witness how well all the patients in rehab are doing. We passed.

Jenny and I spoke at length about the swallowing situation. We need this stimulator to work so, again, troubleshooting was the agenda. We are going to try putting it on Chloe and me at the same time. I can then voice what I am experiencing. We will experience the same sensations at the same time. The intensity may be different but the actual type of feeling will be the same. We also discussed the new voice machine that Larry has found. It may be something we can use. We’ll have 30 days to see.

We had an OT from Bridlemile School come by to see what Chloe has been working at. He will be there to set the program up for her at the school and then will work with her about one day a week. The rest will be up to us so I can see us setting up a complete program for all of us.

Our noon hour was cut in half by the wheelchair rep. Chloe tried a couple different setups and decided on one similar to what we now have. She picked Teal as the color for her new ride. It will fit her well. This one will also have a place for the suction machine to ride. It is light weight and should fit well in Dana’s car with the wheels and back off. They remove easily with quick releases. As usual we have to fix Dana’s car first. We have to put new lift bars on the tailgate. Right now you have to be 3’8” to get under it when it’s open.

Katie took Chloe to the art room as I waited for the pole to be fitted with a new feedbag. I quickly followed with the suction and pole. After I got to the room I realized I needed to go back again for something else. Just outside the door of our unit the fire alarm went off and all doors slam shut. So Jessica, Jen and I stood there waiting for 15 minutes. Glad I didn’t really need to get back ASAP.

School with Julia is always productive. She did her math work and actually had fun doing so. The computer has been a wonderful tool for her in both speech and in her schoolwork.

PT/SP were combined with Jewel and Jenny. Chloe works well with two of her favorites in these fields. Jewel even had her in the stairwell and did two assents of the first nine stairs. She did well, even though it made her extremely nervous. Then we walked back to the gym and her trusty wheelchair.
After a brief visit with Dr. Margaret we were off to group activities and painting. She painted a new peace sign with suns and happy faces all around it. We will finish it in the room as she was redirected by the girl from yesterday who is a never-ending question. Chloe typed her history from 2 years ago until today, into her speech program. Then she played it for everyone in the room. It got very quiet in there as the computer spoke of Chloe’s trials and successes, and her challenges. Everyone was amazed.

Tonight is Gray’s Anatomy so we aren’t doing much. I checked out a movie but it will probably have to wait for a day or two. Then tomorrow there is family training for Dave from 8:30 until 10. I hope to be back with Dana before noon. She is doing all she can to get her energy and health back so that Chloe will have her Mama back.

Be well,
Ron

Thursday, March 5th, 2010

More later but here’s a quick update. Colin’s backpack, book and computer were found by security and returned to him. Chloe had a great night. No suction for 12 hours. Sandy and Dana are still down for the count. Details at 11….

Wednesday, March 3, 2010

Hummmm… interesting…. First Chloe got the creeping crud. She passed it off to Mama a few days later. So Sandy took the overnights. I came in this morning ready to relieve her for a day but she decided she’d rather just stay the night than get packed up and go to the house. That was until I came back up from the afternoon sessions. When I got back to the room Sandy was the color of the hospital blankets… not a pretty color. “I’ve got it.” Like she really had to tell me.

She couldn’t move, much less drive at this point, so she just suggested I go to my two students and then she would try and be ready at 6:45 when I got back. I did and she was just barely okay to get going. So we hauled all her stuff, plus some, to the car and she made it home to Dana’s.

The nurses and I joked about the bio-waste room we were now in. The poor housekeeping lady who was asked to disinfect the bathroom just opened the door and closed it again. She returned in her white biohazard suit and geiger counter and entered the room. Okay… she actually only had a mask and gloves, but didn’t that make a better story…?

I went through the room with another bleach rag and we are hopeful the room is ready to be inhabited again. HOWEVER, we are asking all visitors to please stay at home for a while. The entire floor has had this and we would hate for one of our wonderful support team members to end up bowing to the porcelain god because of us.

The day, other than that was pretty cool… up until later in the day… but that’s another story. PT/OT was good. I snuck back to see how things were going with a PT therapist I didn’t recognize on the schedule. It was Nicole though, and she is a very good match for Chloe. When I got there she was working her on the stairs and they had tried a variety of ways to get up and down. Chloe looked very comfortable.

Her walking went well also. We discussed a new brace or maybe a little support for her right knee. It tends to want to be locked or buckled. My thought was maybe a little sports knee brace and Nichole thought that might be worth a try. It would give the impression of support more than just keeping the knee braced.

Jenny and I had a long talk about the procedure she did with Chloe that didn’t work out well. It seems this is the one procedure used to stimulate the swallow. It’s used on 2 month olds through adults. It just so happened that it wasn’t comfortable for Chloe. We discussed why and what might work better. Later I had the same conversation with Chloe and she thought we were probably right. She wasn’t ready for it, Mama wasn’t here and she might have perceived the pain more than experienced it. We’ll try again soon.

After lunch we had a quick PT/OT. I had her down there in time to get going because at 1:30 we had BINGO. You can’t miss BINGO you know. I asked if they would bring her back to the room and I’d start the game for her. At 1:40 she came in and took over for me. After winning her first game we went to the Starlite Room to get her prize. She picked out a beanie baby puppy named Tracker. We then moved into the BINGO room to join the largest crowd I’ve seen at the games. When she won game two I was kneeled behind her. So I raised her arms, and in my best Chloe impersonation, I yelled BINGO! That was fun. Game three I did a similar thing and after reading off her card to Jessica I was told that next time I’d have to read the card in my Chloe voice as well. I can do that. We then left with Tracer, her new beanie baby Koala Bear, and nail polish.

Now it was time to run to school. I explained to them that the school bus was late. They didn’t buy it and I was sent to detention to read my Time magazine. We ran overtime, as I was late, and then Dr. Margaret found us. We finished our official day with her for the next hour.

Tonight we spent time on our computers, with Chloe gaming and me trying to catch up on emails. I was advised that there was a request or two for Chloe’s Peace Sun Tee Shirt order forms. I don’t know how to attach it here but if you’ll just email me I can get it right off to you. RonHorton21@msn.com .

When I left to meet with my students I received a call from Dana. She was pretty upset and I followed suit soon. Colin was a victim at Wilson High School for a second time. He was in the gym for weight training and he left his backpack, computer, biology book and essays by his friends’ locker. You and I know this is a stupid thing to do. Colin, on the other hand, hasn’t developed that cynical outlook of humanity yet. He didn’t give it a thought that some sleezball would steel his things. They did however and, although we might have been upset with Colin’s recklessness, we are furious over the fact that someone would do this, and that the school is not a safe place for the kids to be. The school knows who the bad apples are. Let’s see if they pursue this problem and handle it appropriately. I personally feel like handling it inappropriately. The police report has been filed.

Please keep an eye out on Ebay and Craig’s list for an emachine laptop computer with or without a backpack. These kids have to be found and corrected. He was most upset about the biology book and essays. The book alone is $150… The essays, priceless.

Chloe is asleep with Harry Potter playing in the background. She turned a bit, probably missing Mama. It’s the second night without her here. That’s not a good thing for an 11 year old. Thankfully she finds my stupid humor funny and we get along so very well. We even tried out the new walker that Patty hunted down for us. We will try it again but it’s more of an adult size and is a bit awkward for her at first try. We’ll see.

Be well.
Ron

Tuesday, March 2, 2010 – 3 months post surgery

The whole ward has the creeping crud and Chloe and Dana aren’t immune. Although Chloe is coming out of it, Dana is going into it full bore. Not fun. And each other is worried about the other.

Sandy was with Chloe all day today and a long day it became. Feeling puny was bad enough. Then she was faced with the end of the morning and a electrifying test in speech. Jenny tried a test on her to stimulate a swallow. Well, it didn’t go well. The intent was good but the results were very rough on Chloe. She felt a very hot burning sensation under her chin and on her neck. They stopped the test when it was obvious it wasn’t going where it should have. She should have felt a little tingling and then some burning, followed by a grabbing sensation that would have triggered a swallow. She only got the burning sensation and it was intense for her. It may be tried in the future but I think we will have to see more tongue movement first.

When I got there at 4:30 or so, Chloe was deeply involved in her computer games. Sandy was on her computer. There was an oxygen line stretched across the bed. And the atmosphere was about as serious as it could get. I almost laughed. It was a site for sure.

Chloe has her spark back so I think tomorrow will be a much better therapy day. Sandy manned today’s meeting for Dana and Me. Dave was also there. Dana was sick and I was at the VA hospital for my own appointment. I decided to get the H1N1 and seasonal flue shots while I was there. So I came back and showed Chloe my three needle pokes. Her reaction was precious.

Just as I was about to leave for the evening we received a very sad phone call from one of our dear friends and huge supporter, James. His mom has been in hospice for a while now. She moved up this evening and our hearts and prayers are with James during his grieving time. You may remember James is the one who brought Chloe’s Peace Sun to life.

Be well everyone.
Ron

March 1st/2nd, 2010

Just a quick note. Chloe is still sick but a little better. There is a bug going around the floor and now Dana has it as well. So we are juggling things a bit to make everything work with coverage.

Today the speech therapists were trying a nerve stimulation to try and get Chloe to swallow. They thought it might be too soon based on the lack of tongue movement but they wanted to try anyway. The test is a tough one but the got through it. Unfortunately it didn’t produce what they had hopped so there was no advancement today.

Overall things are a bit sluggish right now. We are looking toward better days ahead so we can make the most of our rehab days that are left.

Be well,
Ron

Sunday, February 28, 2010

Trying to figure out why we had a night free of suctioning, nine hours or so, and then had a day like today, is baffling to say the least.

Dana left the hospital at 10:30 am so Dave could get 4 hours of hands on experience as if they were not in the hospital. Chloe woke up puny and she has been getting jaw pain on and off for a few days now. We think it is nerve regeneration, which is a good/bad thing. The regeneration will be great but the pain is… well… PAIN.

She hasn’t been this sick in quite some time. Diarrhea has been so bad that she’s dehydrated. Dana got back by 2:30 pm to find Chloe just wanting to cling. Chloe was very warm so she asked for a fan. The hospital didn’t have one available so Dana called me to get one. However, by the time I got mine from the attic and washed it, the hospital came up with one.

When I got to the hospital about 3 pm, Chloe had Clair visiting her. Clair is a classmate and good friend. They were visiting but the first thing Chloe asked of me was for a new ice pack. She looked like crap to put it mildly. She didn’t have any spark. She was sweating. She had obvious pain. And try as she might, she wasn’t too sociable.

Dana and Larry came back in the room after having a conversation over coffee. Larry is our Brain Guy so talking with him is very helpful. He shared a very good story with Chloe that made her sit up and listen. It was one of those good recovery stories.

In a little while Jake and Patty showed up. We got Chloe all ready, as she wanted Jake on the bed with her. It was a meeting that so reminded me of the first time they met. She was weak and sparkless but she wanted to pet him and get some healing doggie kisses. They had a nice visit. I had to leave to teach my Sunday night class and they were about to wrap up the visit. Chloe was exhausted.

I called Dana right out of class to see what was happening. Chloe was weaker and more dehydrated and clingy. There was an order in for more fluids. Her cheeks were puffy when I arrived earlier and they hadn’t changed any since I was gone. Dana seems to think she may have a virus of some kind. Possible, but I sure don’t like guessing with her. Hopefully the doctors will come up with something overnight.

In the mean time we are asking those who pray to do so for her and for those who hold good thoughts to do so, or whatever you do to help things heal, we ask for that from you. This Team Chloe is huge so let’s win one for the team.

Be well,
Ron

Saturday, February 27, 2010

It’s winding down now and it’s a bit scary. We go home in 11 days. It sort of reminds me of Robert Redford’s line when he won the Presidency in “The Candidate.” What now?

In looking at the house over the past couple days Dana is pretty depressed that it’s not wheelchair friendly. I was able to get into Chloe’s room today and lower the bed to the floor so she can get in and out. Her room is now about as clean as it’s going to get but I still have concerns leaving the environment of the hospital.

Other things that will pose a problem as we see it right now are: We need a small wheelchair ramp to get in the house. Inside we need to move or get rid of some furniture. The basement stairs are going to be a nightmare, even if we get two new, reinforced handrails. Then, looking out the back window, it came to me that she will never get into the back yard with the condition of the deck. So, I think I’ll be making some calls to see what organization would like to do a little work to the house. I know that Home Depot does charity work like that and probably Habitat for Humanity would have some ideas.

When I arrived at the hospital today I beeped at Dana, Sandy and Chloe who were all out by the heliport waiting to see the helicopter. It didn’t arrive. It’s very illusive. I guess it’s a good thing it’s not coming in all the time.

We went to the piano so Sandy could see how well Chloe is doing with that. Of course, Chloe being Chloe, she did little on the piano this time. It’s something about an audience that she shies away from. Sandy and Dana took off and Chloe and I spread our wings. She did most of the wheelchairing to the elevators, to the sky bridge, to the bowels of the hospital basement and finally back to the room.

When I left tonight Josh had brought her some more “fish” to squirt all over the place. It’s a funny scene when she gets shooting those things at everyone. I’d feel better about her just using a water pistol though. All I can see is the amount of waste we are creating at the hospital. It’s amazing!

My favorite winter sport just pulled down the gold. The first time since I was born. So I’m closing with, Way to go 4 Man Bobsledders!

Be well,
Ron