ChloeWatts.com

Tuesday, December 29th, 2009

Here’s brand new start of the blog…. Chloe had a pretty good nights’ sleep last night. What??!!! Yup, she did pretty well and woke up doing well. That’s a great start when she has a great start.

The entire day went pretty much according to plan. PT showed up early and got Chloe started. Afterwards they did a cough assist and took Chloe off the ventilator. She stayed off for four hours.

At 11 am Dana and I were invited to an informational meeting with the rehab staff. While there we were told about the plan of attack and specific goals. All of this sounded very realistic and encouraging. The only bad part was they are looking at six to eight more weeks in the hospital. However, when we leave here they expect Chloe to be only a limited assist patient.

Shortly after we returned from the one-hour meeting she went back on the vent. Then PT/OT showed up. The strength Chloe showed was very encouraging. They made their tests and she really impressed them. Here leg strength has increased quite a bit as well. Then it was time for her to sit up. She did a good part of the work and held her head up by herself for the first time. Then she stayed seated, with help, for 13 minutes.

Next up was speech therapy with Kim. She brought a larynx voice machine and Chloe was able to play with that a bit. It’s robotic in sound but, at least, she will be able to communicate better after she gets the hang of it. We will be getting a loaner of this $700 machine… as long as we put a credit card up for guaranteeing it doesn’t disappear. You better believe we will be keeping an eye on that little flashlight looking unit.

OT showed up to help get Chloe back in bed. With the vent hooked up it’s a bit of a mess of tubes to keep track of when putting her back in the bed. She was worn out by this time.

After her bed bath Chloe wanted home cloths. So we got her fixed up. When asked what she wanted for a shirt there was no hesitation, the Twilight shirt from Ruby Bell. So she said she is wearing it for her friend.

Both Dana and I had a chance to suction Chloe with the single sterile tube. Chloe helps out with her belly coughs. It’s not exactly a cough but more of a huff. Afterwards she went back of the vent for another 4½ hours.

It started snowing while Chloe was in the wheelchair and she had a good view. So while I was coming back from dinner I went out and got her a large cup of snow to play with. I put it in a dishpan to protect the bed but she still played enough to spread it around a bit. The interesting part was we discovered she couldn’t feel cold on her left side. Right side was no problem but the left wouldn’t register anyplace.

Her friend from the cafeteria came through for her again. Celeste came over to me during dinner and gave me a laminated calligraphy of “Chloe” and two bottles of nail polish, blue and green. Chloe lit up as usual. Anything Celeste does gives her a smile.

Another friend I forgot to mention from our last visit was Shirley from housekeeping. She just got out of surgery herself and was on for the first day yesterday. Chloe immediately remembered her when she came in to say hi.

Dr. Shih, who works with Dr. Cockrell, has become one of Chloe’s new favorites. He makes jokes she can relate to. Then Sarah came in and turned all the jokes back on me! Thanks a lot. Thought I was off your bad boy list. By the way, Chris beat you to the room today…

Okay… so here’s a sample: “Why doesn’t anyone want to hang out with Tigger? Because he plays with Pooh.”

By the way, if you are a visitor I must remind you we have started rehab now. That means she has a pretty buy schedule until 4 pm so if you come before then you may not get a chance to visit. Short visits tend to work best with softer voices. She does well then.

We are looking forward to many more good days. Let’s keep working toward the ultimate goal. Thanks for all your help.

Blessings,
Ron

Monday, Dec 28, 2009

It’s never dull with Chloe. After what seemed like a great night with Mama, sitting on the side of the bed… supported well of course… to dancing to Thriller… as much dancing as one can do on the side of the bed… to getting some good sleep after about 1 am, we then had the morning arrive.

Trying to get sleep in the morning is trying at best. All the activity started early, before 8 am. Then there were two cough assists within 30 minutes of each other. She had a lot of secretions from her nose and her breathing was shallow. Finally, at about 8:30 she fell asleep, completely spent. That lasted until about 12:15 noon when she needed to wake up for more nurse stuff.

When I arrived at 11 am she was sleeping deeply but her color was terrible. Very pasty and grayish, a look she hadn’t had for quite a few days… except for her crash the other day.

She had an x-ray of her abdomen and chest to see why things were what they were. The lungs looked good but she had a lot of pressure below that had to be addressed. That would make her suffer until about 6 pm.

Katy from childlife came in to see if she wanted to do a craft. After many choices she decided on a snow globe with a space to be able to put two pictures in it. As we were waiting for her to decide on the craft, Dana, Sandy and I all secretly guessed she would chose the globe. What we failed miserably on was the guess for the pictures. We all thought it would be Edward and MJ. Surprise! She wanted two pictures of Dana in the globe. One was to be a serious picture and the other, a silly one. The pictures came out great and after Dana left for the night Chloe kept the globe in her lap and looked longingly at it for an hour.

Rehab started today with Katy and Michelle coming in to do an extensive assessment of Chloe’s abilities. To their surprise, Chloe was much stronger than they expected. Also to their surprise they initially faced three badger making sure they were qualified to work with our Chloe. They were.

Chloe does have pretty good muscle tone so now we just need to get the coordination back. Rehab had her write her name with both hands. After many attempts to hold the pen she was able to write her name with her right hand. The left hand penmanship was actually pretty good.

Tomorrow we will have a meeting with the rehab team and also have two different sessions. The first PT will be done in the room; however, the afternoon session will be in the gym. That means we will finally be out of this room after three days. Sure, it’s a pretty neat room, but it’s time to leave. Chloe certainly agrees. Emily, our very good nurse for today, has just finished putting together a traveling kit for the excursion and restocked the cans of feeds we keep in the room.

Chloe did a complete turn around at about 6 pm when the pressure released. The full day of pain was gone, the breathing got better, the secretions reduced and her spirits jumped. Dave came in just after her turnaround and read more of New Moon to her. It looks like she’s ready to party all night but we are going to really suggest she sleep so she’ll be ready for her first full day of rehab.

She has been on the ventilator all day but we will get her a break before going back on for the night. We know that we will have roller coaster times but it sure is much nicer before the drop.

Be well,
Ron

Sunday, December 27th, 2009

It’s one of those rare nights that I’m away from Chloe for the entire day. I took Dana’s suggestion and slept in, got some things done and tried to relax for a whole day. I wasn’t sure I’d make it without going over there but I guess I surprised myself.

Sort of like what happened according to the latest email Dana just sent. Here’s what it said: “So I just got her boots on, she was in a feisty ‘night owl’ mood, (always perks up in the pm), and then…I asked if she wanted to sit up in bed with just ME here.

It wasn’t a no… It was a ‘maybe’… so we went for it, Just like Katy showed us. Piece of cake. Chloe saw herself in the mirror, (I brought her attention to the lousy job of 1 pigtail I had done.) Anyway, she sat up for a couple of minutes and didn’t look disturbed… AT ALL.

We had MJ on at the time so we did a little bed dancing to celebrate.”

It’s moments like this that keep us all going. Or times when Chloe just cracks up laughing like she always did on a normal day in the past… but without sound right now. We need these times, all of us.

Today I was transfixed on the problem facing me with my daughter in Wisconsin. One of her three-year-old boys broke his femur yesterday. She has four kids under five years of age, and a new puppy in the house, and now she has a little guy who will have to be carried everyplace since he can’t put any weight on his leg for three weeks. So, where’s Dad when she needs him? He’s taking care of his new family and, once again, his oldest daughter takes the hit. So the ol’ guilt gene kicked into overdrive.

Then I get reports from the hospital and I know that, although it has a confused feeling, I’m doing exactly what I am supposed to be doing. And, you know what… In the deepest part of my daughter’s heart she knows it as well.

Even though it’s Sunday, things didn’t shut down at the hospital entirely. Dr. Cockrell showed up early to make a decision about nutrition and rehab work. We had been concerned about a new plan to do bolus feeding with Chloe. This would mean pulling her nose feeding tube out a ways so it was positioned in the stomach. Then we would give her three large doses of feeds each day, just as if she was getting a meal.

Sounds like a plan until you go with her history. She hasn’t had anything in her little stomach in twenty-five days and it’s a stomach that has had a history of not being too settled. One thing we really don’t want for her is to vomit. It was bad enough when she didn’t have a trach. We don’t want to find out what it would be like with one of those in her throat.

Dr. C. decided this wasn’t the right time but it’s still on her horizon. She also showed Dana the latest chest x-ray and it was looking very good, almost normal. That’s a great thing!

Chloe spent some time in her chair today, the wheelchair. She didn’t take a trip but just sitting there is special for her. The more we have her sitting up the better it will be for her lungs… and her spirits.

Colin came to the hospital again today with his Dad. It’s always as treat when Dana and Colin can have some special alone time together. He is one who tends to build up a bunch of questions or concerns and unloads them all at once. The good part is that he does, indeed, unload them.

Dana just wrote that there were two nurses in the room so she was going to get a little dinner. There have been some things brought to us that have really hit the spot. The last salad was tremendous. It’s such a treat to be able to have the choice of going to the same old grease trap or having something homemade with the extra ingredient… love.

And that’s what we send out to you as well… love. Thanks for being there.

Blessings,
Ron

Saturday, December 26, 2009

Our Christmas present from the hospital is a huge room. Since Chloe will be going to rehab on Monday we have been moved into the rehab room side of the ward. It’s like a triple room with only one bed. So that makes it easy to get to either side of the bed to help her and it gives us lots of room for sleeping during the night. We also aren’t cramped for our necessities that are mixed among the machines Chloe needs. The only down side is that it’s more noisy and colder. We’ll deal with that.

Sleeping is still a challenge but it’s getting better. When I got here today everyone was resting so I sat and fiddled with some computer work. About 10 am Dr. Cockrell showed up and took a listen to Chloe. She sounds pretty good but they scheduled a chest x-ray to see how the fluid and infection is going. Results later.

Dr. Norwood was next to show up, bearing gifts as promised. Actually it was just one gift, the picture of his puppy for Chloe to put on her wall. These two interacting is fun to watch. They tend to cheer each other up immediately.

Third up was Katy, the rehab PT. She worked very well with Chloe, getting to sit, hold her head by herself and getting her feet on the ground, even though she didn’t have a lot of weight on them. Before the heavy-duty stuff she did all her exercises.

The timeline is a bit mixed up today but it seems about 1 pm we started moving to our new room. That took a bit of doing since we were just three doors down so we didn’t use a wagon and we had all sorts of posters to re-hang.

About that same time James and Daniel showed up with a gift for Chloe and the rest of us, her Peace Sun Design on tee shirts and a special sweatshirt for her alone. They are very nicely done. The guys were a good relief for Dana especially as James has been a special friend forever.

About 4 pm someone from OT showed up. This was the big mistake of the day. The PT people did such a great job getting Chloe up and everything. The OT girl didn’t have anything go right from start to finish. Chloe even blacked out after getting her in a seated position. We did a second try after we got her stabilized but it didn’t go much better. I think, from now on, if they aren’t a regular on the team I’ll be asking a lot of questions and will probably request a nurse be present. I wasn’t impressed with this procedure. I hate learning at Chloe’s expense.

Then during the move, while trying to get all the machines hooked up and lines repositioned, etc, I got a phone call on my cell phone. I took it out of my pocket and flung it onto the windowsill bed. I was still a bit fried by the OT episode. When I checked the message I found out one of my twin grandsons broke his femur sledding today. Like I really needed any more stress. With four kids under 5 years old, and a brand new bullmastiff puppy in the house, my oldest daughter is in a constant battle of medical mayhem.

Maybe someone can help me understand something I heard recently. Long distance Reiki and Energy Work can interfere with sleep if done after 7 pm. I don’t know a lot about these forms of healing work but I do know there is a lot of belief in their power. However, if Chloe is getting help after 7 pm this might explain the restlessness during the night if what I heard is correct.

It’s 6:30 pm and Chloe will be coming off the vent for four hours. Then she’ll be on it overnight. She is exhausted but doesn’t know how to catch some sleep. Not sure what to do about that other than to keep quiet and see if she can be lulled to sleep by her music.

There have been some very heartfelt food donations showing up at the hospital. There’s no way to express the amount of gratitude we have for you generous people. There are many of you involved so please accept our blanket thanks. If I tried to thank you all individually but I know I’d miss someone.

So Dana and I are going to get settled in now. I’m still not sure of the schedule but I’m very concerned about the lack of sleep everyone is getting. We need to figure out how to have everyone come when they want to come and still have quiet so sleep can be completed as much as possible. If we are all walking zombies then Chloe isn’t going to get the care she needs and things like the OT episode will have more chance to happen again.

Be safe and well,
Ron

Christmas 2009

Merry Christmas. Let’s make it a Merry Year. Although there was no sleeping going on here last night things progressed well throughout the morning and afternoon.

Dr. Nichols stopped by for a listen and liked the way Chloe’s lungs sounded. We have had a couple cough assists and pulled some thick gunk up but we’ve had it pretty good so far. She is also trying to cough, practicing is actually what she says she is doing.

The I-Pod she won from Lucy’s facebook challenge has been the greatest gift. She drops it a lot but, overall has figured it out and been using till the battery runs out. She said that the dexterity was coming back some from using it.

Swamp Santa stopped by to visit with his favorite patient. He brought her the board game Sorry. We will definitely be playing that together ASAP. I’d say within a few weeks. Chloe’s determination in the fine motor skills is amazing to watch.

She received two gifts from Santa that were huge hits. First was an Ice Blue digital camera. She can snap pictures of all her friends as they come in the room now. Second was a full size portrait of Edward. She will just have to meet him someday!

It’s nap time in the okay corral right now. With the lights off even I’m dropping eyelids every once in awhile. We are going to try and have Chloe do some power naps in order to get a sleep pattern developed.

Dana, Chloe and I had a little Christmas before noon and then Dave and Colin showed up for the rest of the presents. Everyone did well in the receiving department. The gifts Chloe bought with the Make-A-Wish people were last and longest. Great gifts!

Dana has gone home for the evening and I’m on the swing shift today. Sandy will join Dana at Kevin and Laura’s house for dinner and then Sandy will be by here for the night shift. We are trying to devise a system that everyone can get some sleep and keep their lives in order as we move forward.

We had a peak at our new room when we start rehab and it’s so much bigger than this one that it will be easy to take care of business. However, it means we are in it for the long haul.

So that was our Christmas. We hope you all had one at least as good as this was for us. We know the place isn’t the most inviting but we also know it is all the right plae and right time.

Be well and Merry Christmas!

Ron

Christmas Eve 2009

What a day! Chloe didn’t sleep well at all last night. Sandy and she dozed off around 3:25 am. I arrived around 8:15 and they already had company. No wonder everyone is dead tired. I left to go sit with my tea until the doctors started their rounds.

Although the sleeping part didn’t go well it wasn’t due to anything special. She has been on the ventilator at night and hasn’t had as much cough assist needed. We will go with the sleep meds again tonight and see if she can make it through the night. My feeling is that she’ll be tired enough to sleep.

Today’s plan was to get to the gym. So, about 10 am the two PT ladies came to get Chloe. It was a good and bad experience. The bad was that there was not good briefing given about what Chloe could do or what she would need to bring down with her. They expected she could sit up, stand and get in the chair by herself. NOT. After giving them the briefing we were able to sit her up and get the wheelchair set up. That took about 30 minutes, however, now they know what to expect.

Dr. Dorsen showed up during a time when Dr. Cockrell’s co-doc was in the room. She turned to greet him, introduced her self and asked “are you with Pulmonary?” He smirked and said, “No, are you?” She answered and he just said, “I’m actually with Neurosurgery.” So I said, “yea, he’s the one who…” and he interrupted, “who gets all the blame.” I said, “actually the credit. Without you this day wouldn’t have been possible.” He’s my Santa.

We did a cough assist before getting under way to the gym. Then Linda and her co-worker helped Chloe into her wheelchair and Sandy and I helped the caravan of machines and Chloe for the walk to the gym. It’s located on the second floor; quiet a ways from the room, so it took a while. We took the scenic route back.

When she saw the gym with a couple other kids there she started easing up. There were mats and table things. We pulled the chair up to an elevated mat and transferred her over. That went easier than getting her into the chair. Once on the mat she started to get really comfortable. Linda got an exercise ball and sat with it on Chloe’s back and Chloe’s feet were on the floor. Then she played beanbag toss. She was challenged to reach for the beanbags first and then to try and get them in the holes that were about 2 feet away. She hit the board most of the time, hit the nurse once and hit me once. She lost points for the last throw…

When she was sufficiently worn down we got her back in the chair and made our way toward the room. She was smiling all the way back to the room. And when we rounded the corner, there, in the middle of the hallway, was Chloe’s best friend, JAKE, alias CHESTER the golden retriever with Patty Brandt. They had waited for Chloe to get back from the gym… probably for a while. Chloe almost climbed out of the chair to pet Jake. The meeting was mutual but brief, as we had to get her back in the bed. Patty and Jake waited patiently so that Jake could join her on the bed. They visited for about a half hour with Chloe petting Jake the entire time. Then it was time to wish Patty and Jake a Merry Christmas… by signing. She has that down well.

Rev. Merv and company showed up with ukulele and voices to sing to us. They did some great tunes. They didn’t know the words to Randolph the Bowlegged Cowboy though. Although they did try a little of Grandma Got Run Over By A Reindeer. They had as much fun as we did. Thanks guys.

The most wonderful social worker in the world, Sarah, of the Swamp Fox Team, was by twice to cheer Chloe up. If there were a video about Social Workers I’m sure Sarah would be the spokesperson for the entire Social Worker world….(There Sarah, am I off the Bad Kid list now???)

Dr. Kevin Norwood was also here Twice today. Chloe asked him for a puppy for Christmas but he refused to give her anything live. So a picture of his puppy may be on the way and that would suit her just fine.

Curiously enough, the only member of this fabulous threesome that didn’t show up today was… ah..er… let’s see… rather we didn’t see… Chris. Sick ‘em Sarah. Oh, how I just made Sarah’s day. We forgive you Chris. You looked busy. Merry Christmas “A” Team and You Too Captain Dr. Michael Dorsen.

TJ… Chloe loved the hat. You are a talented guy. You’re welcome to visit anytime but don’t expect us to be back there…. No offense…

As you can probably tell by my demeanor tonight I felt as though today was pretty good. Chloe is a happy camper tonight. She’s about to get her boots off for the night and she is getting her last meds for the night. After some Christmas TV Cheer we hope to have a long successful night of sleep.

So to all of our tremendous followers and supporters we wish you a Very Merry Christmas. There are many of you that I personally would love to be with tomorrow. And I know that feeling is room wide. We will have a Merry Christmas because we are together and Chloe is happy. Colin will join us tomorrow afternoon and that will complete Chloe’s picture. Our two little Christmas Trees are brightening up the room and we will be up at a reasonable hour tomorrow to see how blessed we have been.

Blessings and Christmas Cheer,
Ron

Wednesday, Dec 23, 2009

Dana and Chloe had a rough night trying to adjust to the new room and procedures of the new floor. They didn’t get to sleep until after 3 am. Then they were awakened at 7:30. Dana is trashed, completely trashed. To say she is hanging on by a thread is even an overstatement. With the help of Rev. Barb, I was able to get Dana away from the hospital for about 3½ hours just to try and have her be normal. She cried at McDonalds, she dragged through the Pottery Barn and she felt overwhelmed at the house.

Tonight she went home to try and get some rest and she was awakened again from her much needed sleep in her own bed! I thought everyone, by now, knew and respected the fact that she needs her rest when she’s home. Someone didn’t get the memo I guess.

Rev. Barb and Chloe had a great time. Barb read to her. Chloe took a little nap. When we arrived back at the hospital Chloe was winning at Bingo again. She won 3 games! It’s great fun, and, for the kids that can’t make it to the activities room, it is broadcast to their rooms. When they win they just call in and claim their prize.

Dana gave Chloe a bed bath and washed her hair. That is quite a feat, when you’re awake, mush less when you’re asleep. The bed was going to be switched out for a different kind with an airflow mattress so it was a good time to mess the old one up.

Sandy arrived shortly after we did and took over for Barb. Dana and I carried things to her car and, although she was without sleep for many days, she drove home, with instructions to call when she got there.

Colin was going to be at the house so they would have a time to visit before his Dad picked him up. Dana went to bed as soon as she could after speaking with Colin. I guess Colin had a lot on his mind.

Chloe, in the meantime, was busy at the hospital. She is now on the ventilator a few hours, off a few and on it overnight. This gives her a little assist to help build up her strength but not so much as to make her lungs lazy. She had fewer cough assists than any other day I’ve been with her. She was looking good and her spirits were bright.

Dr. Norwood appeared during our away time and Barb said Chloe completely lit up. They really have a cute little stick going on. Sarah does a lot for Chloe but ol’ Swamp Fox really gets her going. Chris, you do a pretty good job too.

The plan in place is to have Chloe go to rehab starting Monday. This will be hard work for her as it’s 3 hours straight, two times a day. The rehab takes everything into account. There will also be training for us, on all the machines she may need, the trach, the exercises and everything to look for. They told us we would be experts by the time we were ready to go home. The bad part… we may not be going home for quite a number of weeks. It all depends on Chloe.

Tomorrow we hope to have a digital speaking machine so Chloe can start talking. It won’t be her voice but it will be a voice. It was all explained to us and we all think it’s a great idea to get her to believe talking again is possible.

This blog is being followed by so many who love Chloe. Dana, Sandy and I are the revolving caregivers but there are so many who would if they could. Thanks for being there.

Blessings,
Ron

Tuesday, Dec 22, 2009

Hello Blog. We had a big day. First thing out of the box was when Dr. Quint came in and told me we really want to get Chloe to the floor today. Then Dr. Mark came in and said the same thing. He told me Dr. Cocral (sp?) will be in charge. She is from Rehab and, when we actually start rehab, she will be our doctor there. Dana woke up in time for rounds and it was confirmed we would get sprung today!

I’m sure the fact that Chloe had a wonderful night was a key to their decision this morning. It’s something we all were sitting on pins and needles to hear. The good news, unfortunately, didn’t keep me from hitting the wall with a completely out of line RT chief this morning. Sometimes it’s just good to make the point that has to be made and let go.

I went for my catnap and in an hour Dana was getting me up for the move to the School Age Unit. The nurses on that side were really excited because they all know Chloe from last year. It was fun to see them come to PICU and ask when they would have her back.

The room is completely backwards from all the other rooms we’ve been in over there so it’s strange setting it up and getting so we aren’t running into walls. The actual move to the room went smoothly. Once there, the plan was reemphasized that we would keep Chloe off the vent for five to six hours at a time and then give her a break on the vent. That way we can do more PT and OT with her and she will have the strength to do all the things we ask of her.

Sandy walked in as we were setting things up. What a great relief to see her back in town. Chloe lit up. Tonight Dana is going to sleep in the room with Chloe and Sandy has Colin home at the house. That will be great to get Colin some Sandy time.

We were a little frustrated with not having PT or OT over in PICU for the last three days. It was an order mix-up. When you move between units new orders have to be written. One hand thought the other had done this and it wasn’t even caught at rounds when we mentioned it. If that’s the worst thing to happen I guess we will get over it. Both PT and OT showed this afternoon and we put good use to both of them. Chloe sure has the determined look when working with the coordination exercises. She’s comical when she is asked to do something with her limbs and they don’t cooperate. Her right leg was having difficulty staying in the knee bent up position so she pointed at it and mouthed “stay!” It did.

When PT got there and, after we did her exercises, Jeanine and I were able to get her sitting on the side of the bed and holding her own head up after only a little support. She was scared because last time we did this her breathing went to pot. This time she made it just fine. In fact, both PT and OT commented on how much stronger she was since the last time they saw her. It’s true; she is making good strides in that department.

Dana and I are going to be able to go shopping tomorrow morning thanks to the watchful eyes of Rev. Barb and sister Sandy. Dana has so wanted to get out for a little real people time and tomorrow is our only opportunity before Christmas. She did get a couple hours at home this afternoon to re-acquaint herself with her house and Ivey.

Be well,
Ron

A few Pictures

Dana, Chloe and Ivey at the beach 11/29/09

Dana, Chloe and Ivey at Lincoln City

Fun at Ron's house Nov 20th

At the pre-surgery visit... A big Dave Ramsey Fan

Dana and Ron with Dave Ramsey

Colin and Dana

Tuesday, Dec 22, 2009 Very Early

We’re all a little bummed out here today. It was expected we would be out of PICU Monday morning, however, with the amount of gunk Chloe was producing in her lungs and the amount of times we needed to get a cough assist on her during the morning hours, it was decided to keep her here until she did well for 24 hours. Nobody wants us bouncing back and forth between the floor and PICU. So, for now, we are staying put.

When we do move from the unit we will be going to the floor and be under the care and watchful eyes of the rehab doctors. That means Dr. Noorwood, Sarah and Chris will have to come by as visitors instead of as official oncology rounds. Whatever works best is what we’ll take. The fearsome threesome did drop by today and Chloe really perked up. They make a great team and have worked wonders on Chloe’s behalf.

During rounds it was determined that Chloe was back to only one antibiotic. One had run its course and now a second was added to fight the new cultured bacterial infection she has. She still doesn’t have a fever so we believe this will clear things up soon. Her lungs were working very hard today trying to clear the mucus so she is back on the ventilator to give her a rest. Again, they don’t consider this a setback, just a rest. She works very hard at everything they ask her to do and we want to make sure all systems are working the way they should when she dives into the rehab program. It’s pretty intense.

Although I missed him by a few minutes today, Dr. Dorsen made an appearance. Dana and the nurse had Chloe sitting on the edge of the bed when he arrived. He told Chloe to raise both arms over her head. She did so right on command and Dr. M.D. almost did a break dance in appreciation. He really has taken a liking to our little star child. No wonder.

The day had its ups and downs respiration wise. After she undergoes some good movement she brings up more gunk. This tends to make her breathing crash. Normal is 100 and when it goes into the 80s it’s cause for action. She was there a few times today. The good part is that she bounces her numbers back up quickly. Highest 90s to 100 is usual for her. Right now she is at 100 with her respiration at 14. When it gets out of the teens that is also something to watch or act on. During her episodes she has been up pretty high, 40 and above. That really wears her down quickly and you can see the concern on her face.

She is getting stronger by the day. She can now help in the rolling process and she can, but is afraid to, hold her head up pretty well. She will lift it off the pillow to reposition her bedding. Her right arm, hand and fingers have a lot more movement and the control is coming back a little at a time. The right leg is doing the same. She is still quite weak on that side but she’s working it. And she says her sight is getting better. I haven’t noticed the eye shaking to any extent in a couple days. She still says she doesn’t think she could start reading again yet. When she does I think that will boost her spirits a lot. She loves to read.

Dana left for the quiet room about 11 pm tonight. It’s always a hard parting when she leaves before Chloe is asleep. The bond these two have is beautiful to watch. I know I’m one of the top potatoes but I also know there is a huge gap between number 1 and number 2 potato.

Most of the day we had Chloe either smiling or laughing. It’s strange to see her laugh and not hear anything. But you can feel the laugh. It’s complete except for sound.

The thought of being here for Christmas has us all a bit down. Neither Dana nor I have been out to even start our shopping. We are hoping that with Sandy back in town we might be able to sneak out for a morning trip to the …. Ah… mall. It’s funny that a place neither of us likes sounds so appealing at this point. Rev. Barb has offered to sit anytime so she is an option I might just ask for.

So many people are saying so many nice things about Chloe and sending their thoughts and prayers her way that it’s warming up the atmosphere. I just hope Al Gore isn’t paying attention… This is a tough road for many of us but I can’t imagine how tough it is for an active 10 year old around Christmas.

Blessings,
Ron