ChloeWatts.com

Monday… early 12-21-09.. Holy Mackeral It’s Winter Already

It’s Sunday night and Chloe has had a pretty good day. When I left this morning she was still pretty sleepy but happy to see Mama walk in the room. Dr. Olson had just come in as well. She didn’t have much to add but thought Chloe looked pretty well. She also believed Chloe would be on the floor tomorrow. That is still the plan. And the oncology doctor on duty, Dr. Kevin Norwood, Chloe’s buddy. They should have fun together this week.

So I went to church today and played “A Medley for Chloe” that consisted of four songs. The first, “The Braham’s Lullaby,” a song most likely, subconsciously written with Chloe in mind. The second, “Oh Holy Night,” brought to me the realization of why it’s such an honor to be able to spend all night in PICU with her while sleeping 5 minutes at a time. The third is Chloe’s favorite song, performed by her favorite performer, M.J., “Smile.” And that’s what she did, full and bright, when I told her that would be one of the four song medley I renamed for her. And the final song depicts what Chloe is all about, “Amazing Grace.” Again, it’s a song that probably was in some way inspired by Chloe. I just barely made it through the performance. I was glad our soundman, John Mckean, had a lot of effects on my sax. It covered my shakes and lack of breath.

Chloe had a few really great things go on today. Most importantly she was off the ventilator all day until about 10:30 pm. She did very well off the ventilator and they just put her on overnight so she would get a good rest. She didn’t sleep all day but did rest well last night.

She went for a wheelchair ride today also. Her tour took her downstairs and around the scenic areas of the hospital. You have to trick yourself into finding areas you can regard as scenic. Just getting out of these four walls is magical for her though. It was about 20 minutes of freedom!

Something I wish I had been here for was the first trial at standing. It took three people to hold our rag doll but she had her feet on the floor and was upright. She was pretty nervous about the whole process because she doesn’t have a lot of control over where her feet go and she doesn’t have much strength after lying in bed for 18 days. But she did it at least. Now the goal will be to do this one or two times a day so that her strength and coordination returns.

She and Mama got to listen to some episodes of Cinnamon Bear on the computer. There is a website that offers most all of the shows for free. She loves that series. It’s kind of cool having a kid loving a radio show in these times. Of course, many refer to her as an “Old Soul.”

She’s sleeping well now and I’ll be sitting vigil until Dana comes back to the den. I’ll probably stay at the hospital tomorrow until we move. That should be easiest on Dana. Even though we have leaned the room down quite a bit there is still enough to overwhelm a worn out Mama Lion.

I’m sending love and a special thanks to all of you at Celebration Church today. We want to thank you for any cards or gifts that come our way but we will need your help. Please don’t be bashful reminding us what you have sent. I’m lucky I was able to remember my name this morning, much less who gave what to whom. Please know that it is all very warmly received, it’s the very tired and worn out gray matter that is lacking. The bracelet was a big hit… but I don’t remember who made it… so sorry.

Blessings,
Ron

Sunday.. 12:39 am.. 12/20/09

Today was a fairly good day for Chloe. She had a few uncomfortable problems but they were resolved by about 9:30 pm. Since then she has been all smiles and pretty happy with Dana and me in the room. She and Dana are watching Nancy Drew Mysteries. At one point Chloe said she was getting a little freaked out. I’m not sure why as she has seen it before.

Back to this morning. Dr. Quint was first to drop by and he checked Chloe’s chest. He said she sounded pretty good and said she would be back on the floor soon.

Dr. Nichols showed up next and said for us not to consider coming back to the unit as a setback. They just wanted her to be on the floor so much that they pulled the trigger just a tad too soon. He said she would have another antibiotic started in order to be ahead of any possible infection that may show up on the current culture. He said if nothing showed, we would simply stop the antibiotic but if something did show we wouldn’t be chasing it. He ordered another chest x-ray to compare it with last night. It’s necessary although we’d really like to stop the radiation. She’s had too much for our comfort.

Nurse Ericka came in next and showed me the two x-rays side by side. The morning one was slightly better, showing the grayed out area a little less cloudy.

Then the Big Kahuna, Dr. Dorsen showed up and spoke with me a while. He is still very optimistic for a full recovery. I asked him about the order we could expect things to recover. Motor functions are superficial on the brain stem, so they will come back first. We have seen signs of that already. She is doing much better with her movements which means her long way to go isn’t quite as far now.

The last to come back will be the vocal cords. They are a deep sensory nerve, meaning they are deeper into the brain stem and will take the longest to regenerate. He said there is absolutely no time frame with recovery, it’s just when it is. She has been such an amazing case that anything’s possible.

I let Dana sleep in today. She didn’t need to be here and I didn’t need to be to the class I teach until noon. So at about 9:40 or so she finally turned her computer on to see the time and just couldn’t believe it was so late. Being the only one in the quiet room helped I’m sure. Not to mention that she is completely exhausted. There is a term used to describe the PICU Moms, PICUosous. It’s a real condition that just robs them of anything normal. Zombie would be a close similarity. Then add to that the protective gene that kick into overdrive and you have your devoted PICU Mom… or, in this case, Mama.

It’s still amazing how many of you are following this blog. It grows daily and I love all the comments that come through. When people follow the blog, and tell me so, it shows me they really care about Chloe. It’s also the easiest way for Dana and me to keep you informed and keeps us from reliving each day to many people over and over again.

We are all settled in for the night. Chloe has had her benedryl so she should be zoning out soon. MJ is playing on her Hello Kitty CD player. Dana is packing her computer and is off to the quiet room and I’m getting ready to settle into my wonderful recliner. So until next time… and to all a good night…

Blessings,
Ron

Saturday, Dec 19, 09 Early

Although none of us want to be back in the PICU it was the best decision last night. We were on a steady decline and this was the way to stay ahead of it all. Chloe had a good night sleep on the ventilator. It’s the small assist ventilator so that’s something encouraging. Her main, recent, complaint is where the feeding tube is taped to her face. It keeps pulling. So I’ll ask if they can re-tape it today.

Dana was in the quiet room last night and should have been the only one there. Hopefully she was able to sleep as well. When she went in I know she was pretty tense. She had too many people around yesterday and then with Chloe going into her downward spiral it all came to a head.

We had another culture taken yesterday to see if there is anything else growing in her lungs. We haven’t heard the results yet. With that many people around her, some admitting they were suspecting something but not masking up as requested, we just don’t know. Masking up is SOOOO important be it for 10 seconds or 2 hours. Germs move immediately. I’d like to see everyone masked until we are sure. Personally, I’d rather see her stay in here just for that reason but I know it’s better for her to be in a room with a view. It gives her so much more hope for getting home someday. And we are all about hope and positive energy around here!

So we’re going to try this process of getting her breathing on her own again and moving much less into the School Age Unit room ASAP… but not quicker than she is ready for. We can bring the small ventilator to the floor but we’d rather just not need it at all. What we need to do is get her up and about so that her lungs have to work harder to clear the fluid out. Most people can cough or deep breathe to do that job. Chloe will be able to deep breathe but she needs to be doing something that will make her do that. He cough coming back will be a great thing as well.

Another update will be forthcoming tonight when I return.

Blessings,
Ron

Saturday, early 12-19-09

So, we’re back in PICU. Yesterday was pretty good. Last night wasn’t so good. Today wasn’t too bad. This afternoon it was a fight to keep her O2 up and her CO2 down. This evening went down hill quickly so the decision was to get her back to PICU and get her some assistance for her breathing… she’s back on the vent for the night.

Some who have seen her briefly think she’s doing great because she looks so good. However, if you follow her stats for any period of time you can see there are a lot of valleys during the day.

After looking at her chest x-ray I can see why we’re back here. Her right lung is at about 50% capacity for air. It’s pretty cloudy. The lung doctor made the decision to bring her back here. He said it’s always hoped that we can get the kids off the ventilator and have them stay off. However, most are able to take a big breath or cough in order to clear things out. Chloe can’t do that. Other post surgery problems are correcting first it appears and the serious parts are taking their time. We are fully committed to the fact that the vocal cords and everything else that is needed for speaking, eating, breathing, swallowing and such, will return to their pre-surgery condition. She sees a food ad on TV and lights up like, as Dana says, like she just got a new puppy.

The earlier part of the day had some good parts to it. Chloe did get to go on her shopping trip with the Make-a-Wish people. She was able to sit on the side of her bed with only two people helping her. She held her head up mostly by herself. This was eight minutes today.

Later in the evening I brought Colin over to see his sister. We both masked up because of him getting over a cold and me being paranoid. I know I’m not sick but this dry air in the hospital and the hot air heat in my house make me feel like I need the mask. When I’m outside I’m just fine but with the feeling I get in the hospital there is no way I would bend over her to hold her hand or try and read her lips without a mask.

Colin was very good about his mask. He played with it the entire time he was in the room but kept it in place. The only time he took it off was when he put a surgical glove over his head and blew it up. He looked like a cross between Jack of Jack in a Box and a rooster. Quite the picture.

One huge problem for us tonight was the move from the room to the PICU. Everyone who came to visit brought gifts and other things. Everything was wonderful and we so appreciate everyone who cares enough to do that for us. However, we have a good chance of bouncing back and forth, so we are going to have to keep ourselves lean and mean. Both our cars are packed and we still have too much stuff. It’s a hard paragraph to write but it’s a need and we keep having to answer the question, “what do you need.”

It’s 1:53 am and Chloe is resting well. The extra help was exactly what we needed for her. It was discouraging to have to move back but we know it was the right decision. The lung doctor even said he was a little sad that she didn’t do extremely well the first time out of here. But, he feels confident that she’ll be off the vent soon and back on the floor. Even Dr. Dorsen was amazed she was moved so soon after so many complications.

Tomorrow is another day… or rather… today is another day. They tend to meld into one and other when you spend so many hours here. I still don’t know how Dana does it. I KNOW why… I just don’t remember how…

Be well,
Ron

Friday, December 18, 2009

Although I’m not due at the hospital until 8 pm I have some information from Dana that should be enough for an update.

Chloe had an uneasy night. Just couldn’t find a comfortable position so Dana was up and down all night. She now gets to sleep on the windowsill bench in the same room with Chloe. It’s good in so far as she is there with her, but bad, in so far as she is in there with her and doesn’t get much sleep. All in all though it’s a much better situation for both of them. Chloe has a window and not so many scary monitors hanging around. She is on a four-hour shift for vitals, etc., which gives her more time for doing fun things, like hanging out with Mama and doing PT/OT or exercises to try and develop some coordinated muscles.

That’s going very well I’d say. Every day I see improvement over what she couldn’t do the day before. It’s a long road but she’s definitely on it. She is also mouthing more words thus keeping her mouth ready for when the vocal cords decide they want to wake up like the rest of her is slowly doing. The stroke was certainly a dent in our armor this time around but we have the tools to get that dent out.

Chloe was shopping today. Yup. The Make-a-Wish group showed up and took her out of the room in a, almost normal, wheelchair to do some private shopping at the activities room. There she was able to pick out something for immediate family members and they even wrapped it for her. She was feeling very puny before the excursion but she was determined to go even though she was over visited earlier.

Back in the room she paid a price for her over exuberance when her stats fell to 60 something and the team showed up quickly to get her breathing and O2 levels back up to where they needed to be. It’s all in the game plan though. We know there will be these scary times but without her doing the hard work there would be a lot more scary times.

Dana said a wonderful gift came from the Bridlemile Ladies. It’s a handmade quilt and there are all sorts of notes attached to it somehow. Dana has been reading them to Chloe and they are both amazed by how well everything was done. I’m looking forward to seeing it.

I’m off to get Colin now and we will head up to the hospital about 8 pm. Colin will be able to spend some time with his sister. He sure hasn’t had much time with her due to a cold he is getting over and the rules about PICU when she was there. It’s still mask time but I think we are out of the danger time.

Sunday, at Celebration Church, 10:30 am, I’ll be playing my semi-yearly Christmas solo. However, this year I’m changing it to add Chloe’s favorite song by her favorite performer. When I told her this I got a HUGE smile flashed at me. I told her I’m also renaming it “A Medley for Chloe.” If you want to know what song is added to the Braham’s Lullaby, Oh Holy Night and Amazing Grace, you’ll just have to show up I guess. If you’d like to bring a note or a card I’d be happy to deliver it to Chloe.

Please be patient with us on visitations. We are doing everything we can to keep Chloe safe and on the road to recovery. Her journey is a slow one so having you be patient with getting to visit with her is greatly appreciated.

Be Well,
Ron

Thursday, Dec 17th, 2009

Today was another big day with Dr. Dorsen smiling and very excited. Although there are smiles there are also deep concerns still. We need the lungs to cooperate, we need the vocal cords to respond so she can swallow, eat, talk and function normally without risk of aspiration or pneumonia. These are Big. So we are concentrating on one thing at a time with not timeline in the picture.

I suggested today that we were probably trying to spell the word BELIEVE in this trip down this ugly road. “B” was making it to PICU, breathing. “E” was envisioning and then finding out that the tumor was gone. “L” was life outside PICU… we made it to the next room. “I” was sitting up in bed for the first time, with her legs hanging over the side… with the help of three people. “E” will be everything involving the lungs will be corrected. “V” will be having the vocal cords back and hearing Chloe spout her first words in way too long. “E” will be seeing Chloe Eat anything she wants… She’s thinking Kentucky Fried Chicken. And the ! and the end of the word will be seeing Chloe in a long and Very Productive Life.

We did get to move out of PICU today. The trach change on Wednesday went well and she was able to stay off the ventilator all day yesterday. I spent the late shift with her and she did well overnight with only needing three cough assists to get congestion out of her lungs.

This brings up a good point by the doctors. We need to make sure that no-one with a cold, the sniffles or anyone who even thinks they are sick is around Chloe. She has enough problems without getting the simple cold. This could be disastrous at this point. The unit we are in right now has many other very sick or immune deficient kids there. A person with an illness could potentially risk the lives of any of them.

That being said, the hospital, due to the H1N1, has many restrictions on visitors. We haven’t had the entire family in to see her yet so those people will be getting first billing. After that, per the doctor’s suggestions, we will see about limited visits by the healthiest of you. These visits should be short and set up in advance via email or a call please. There have been signs limiting visits to family but we are uncertain if that’s still in effect. We’ll find out. Chloe is starting an intensive regiment of PT/OT and will be worked pretty hard. This means the medical team will wear her out and we well wishers will just have to understand that she comes first. Chloe is being patient so I hope the rest of us can be the same.

We won’t be out of the hospital for Christmas as far as we can tell. There is just too much in her minute-by-minute care that would overwhelm us if we were even given the opportunity to try it at home. So that means we will be having a family Christmas in the room. This is going to be a challenge as these rooms are VERY SMALL and barely have enough room for a few extra clothes for Dana and Chloe, much less Christmas presents. So we’ll have to figure out what to do about that.

Rev. Barb was able to stay with Chloe this afternoon in order to let the rest of us out of there to attend Colin’s Christmas Choir Concert. Seven of us were able to attend and it was well worth it. The director at Wilson has done a wonderful job with these vocalists and makes it fun in the process. Colin is in the Wilson Men’s’ Choir and they did some really fun tunes and did them well. All the groups were excellent.

Time for sleep. Two hours doesn’t cut it but it’s worth it being with Chloe that much more. I’m proud to be in the roll of Step-Dad for such a wonderful girl. ASD is the official title but she recognizes me as SD and it’s just a formality anyway.

Be Well,
Ron

Thursday, Dec 17, 2009 – We’re moving on up…

Regarding the Mother…

I feel your presence. I feel your presents of thoughts, prayers, visions and voodoo…all are welcome. I thank you deeply, each of you. Please know this.

The PICU staff has been simply amazing. My full gratitude goes out to them for their care, support, professionalism and personal involvement in Chloe’s care and the understanding of all our needs.

Because there is such hope, I wanted to say to all out there I am ok too. I know there has been concern for the mother.

Today I danced. A moment opened itself and inspired me to move. The song is Clair de lune (Debussy). Oh yes indeedy, the Mother Lion danced to celebrate where we are today as opposed to the words, “If she wake up”. I am grateful my belief at that moment was to switch the word to “WHEN” she wakes up. In this room (called the quiet room, a 6 bed unit which overlooks an outdoor garden as well as the heartbeat cafe) my seized up left knee urged me to get up and stretch, breathe and be thankful.

What came to me in the slow movements and breathing was the choice to do so. I could have always danced.

The song I dedicated to my daughter so many years ago? I Hope You Dance.

Music, the healer is working its magic here too. From The Beatles, All You Need Is Love, Michael Jackson’s version of Smile, Robert Pattinson (Twilight heartthrob of Chloe’s’) Hold On, How To Save A Life (The Fray) Over The Rainbow (IZ) and Clair de lune, which gave me the dance. I can go on now into room 9 and follow the yellow brick road towards Oz. Today moves us steps closer to home. But for now, this mother lion is grateful to music, not only for the dance but for the release of emotion and most of all the BELIEVE part of me.

Thank you for following Chloe’s journey and caring so deeply.

And more than anything, I thank you for your part in saving a life.

Now lets get started on rebuilding ………

Peace out,
Dana

Wednesday, Dec 16th, 2009

There haven’t been too many days that I would classify as good days, but today was as close as it’s come so far. Chloe did very well all day off the ventilator. She needed the cough assist machine a couple times and she needs to be suctioned regularly as she still doesn’t swallow. We had her out for a spin in her big wheel recliner and she loved it. Her driver escorted Dana and Me with her and we went to watch the construction of the new Children’s Hospital. Then we went and looked out over the city. Then Dana noticed a big fat guy in a red suit down in the lobby so we hustled down to him. Wouldn’t you know it, there was one thing left in his bag! It was a nice furry bear just for Chloe. Why were we not surprised? She loves it but, knowing how many stuffed animals she has, Chloe has decided to donate it to the Celebration Church toy drive. I’ll drop it off on Sunday.

Today was not only a good day it was also a big day. Chloe went through her first trach change. Although she admitted she was scared we had a very smooth procedure. She saw what her own trach looks like with the help of a mirror. This was her first view of it. Then she saw what the new one looked like before they inserted it into her trach opening. It’s a bit scary looking as it has a tube of about 3 inches that actually goes into her windpipe. Then they inflate a cuff (bulb) to keep it in place. She held Mama’s hand and I played with her toes as the doctor went to work. Dana and I had good vantage points to see the entire procedure. The scary part will be the next one. Either Dana or I will be doing that one. Even with a good look at the procedure doing it will be another story. The doctor will be right there with us.

Around 1 pm the child life program held bingo. Chloe was a three out of three winner. Her first prize was the DVD “Misty,” a horse movie. Second was a make-up kit and third was a very neat eyeliner pencil with a blush brush… or whatever you call it. Think I really know? Just fakin’ it here folks.

Dr. Dorsen and his assistant Tony dropped by later in the day. I haven’t seen M.D. in awhile and it was really amazing to see him in the spirit he was in. He asked about Chloe and when I told him she was off the ventilator all day and was planned to be off all night. He went to a broad smile and said this is “Very Exciting. You know this is VERY EXCITING. You know we may just have a great recovery.” That’s as positive as this medical giant gets. It was a real treat to witness it myself. The other doctors have confided in Dana that Dr. M.D. has a real thing for Chloe. Go figure… Not like she can wrap anyone around her finger or anything like that…

I’m on for the overnight shift tonight and thank goodness I have a really good nurse on duty. She wants Chloe to do as much for herself as she can. So far she has rung for the nurse three times by herself. Minor positioning things but at least she’s in control. She even turned herself quite a bit before ringing for some help.

We have been reading her facebook hits to her nightly. There are almost 500 hits so far. Again, why am I not surprised? She told Dana and me that she wasn’t going to shut up once her vocal cords come back. Her hand mimicked a hand puppets’ mouth. So I’m sure she will be getting in touch with as many of you as she can down the road a piece.

Be well,
Ron

Tuesday, Mid-day 12/15/09

After a long day today, Dana is pretty wiped out. She only got 1½ hours in two different times for sleeping. I know the feeling but she’s in the middle of it all. Chloe is still pretty puny but Grandma is spending a lot of time quietly holding her hand and everyone is encouraging her. This is something everyone says we need to do… and something we have known from the start. That’s the easy part.

She is spending the day off the ventilator for as long as she can. Hopefully it will be all day and then she will go back on the assist tonight so she can get some quality sleep.

The doctors aren’t too concerned about her BP or heart rate since it goes up for short period of times and then comes back down to a reasonable rate. I haven’t heard about the most recent cultures on the suction to see how the infection is. The antibiotics should knock that out.

She had a bath today and then she spent some time with her hospital teacher Sami, a very nice African lady who has nothing but hope for Chloe. Her positive attitude is genuine and deep.

Speech therapy brought the talking keyboard back to the room for Chloe to have during her stay. She’s only spelled out her name so far but she did put two “e”s at the end so the pronunciation was correct by the machine. Before is sort of mushed the end of her name. The stroke has made it very difficult for her to get to the letters on the keyboard but you can see the determination on her face when she is trying. It will be much easier for her once she is able to sit up and put it on her lap. Right now we hold it in front of her and she hunts the letters down and punches them.

PT helped her into the recliner chair again today. It’s a hospital style recliner so it’s more like a tall bed that bends down at the knees resembling a real recliner. It’s one of those baby steps I have referred to. She will be taking many of those along the way.

Many of you have asked about timelines for her progression. There is absolutely no way of knowing for sure. Our first goal is to be on the unit ward by the end of this week. There is a lot more room and a little more freedom for all of us. We are still going to stick to very limited activity and people in the room though as we found too many last year really wore Chloe out fast. After that we will set more goals. I’d rather not be watching fireworks from the balcony like we did for the July 4th celebration of ’08. We aren’t going to rush anything though because good results are always better than quick results.

I’ll be so glad to get to see her again tomorrow. My cold was short lived thank God. I didn’t need a two weeker.

Thanks for being on the team, Team Chloe!

Blessings,
Ron

Tuesday, Dec 15th, 2009

It’s almost 1 pm and I haven’t received an update from Dana since about 1 am, so my hope is that she’s sleeping. My cold is almost gone so I think I’ll be there for tomorrow, another big day. The first trach change is scheduled. If that goes well we can get in the unit where there is more room, relaxation and comfort… all-be-it slight.

Grandma Lee arrived yesterday and that boosted Chloe’s spirits a lot. The first visit was short and sweet but Lee will be taking the late shift tonight and that will be good for everyone. Rev. Barb is on call forever as well. That helps with the mental anxiety of who’s going to be there when Dana crashes.

Dana was very comfortable with the nurse and Rt last night so she said she would even be able to retreat to the quiet room if the recliner wasn’t working for her. It really isn’t a good fit but she makes it work out of necessity. Chloe has the soft call button and can use it well so that is also a relief.

The nausea has passed but they have also stopped the feeds for the night. There is a plan to take another picture to make sure the tube has stayed in place. I’m wondering if the feeds are just not agreeing with her… like a minor allergy. Maybe they have another type we could try. We’ll see about that.

Chloe lost a tooth yesterday, with the help of Mama. It was just too loose to be comfortable with it staying in her mouth. The last thing we need is for her to aspirate a tooth! So, after about 30 minutes the two of them were able to twist it out. Hope the tooth fairy has a wrist bracelet or she won’t be allowed into PICU.

Blessings to our Child Life Rep, Diane. She relieved Dana so she could get a shower and some food. Diane always knows what we need before we do. She’s always a pleasure. And Patty Brandt is another one who shows up at the right times. She brought Dana something to eat, not knowing she was sequestered in the room without an alternate.

Chloe didn’t get her road trip yesterday. The nausea was too much of a problem so they kept turning the feeds on and off and kept a fan on her to help keep the feeds down. We don’t want vomiting at this stage of the game! Her lungs sounded a bit better today so that’s another reason for caution with the feeds.

As soon as Dana is able to send me an update I’ll get it on the blog. For now I’m going to believe everything is calm and everyone is getting the rest they need. I know PT and OT will be up to see Chloe today. She was pretty beat yesterday but she has the determination. She will try and use her fingers in fine motor detail. Although it’s very frustrating for her, she goes back and tries to touch two fingers together or grab something or point and touch something. She’s in a do over stage of her young life.

Be well,
Ron