ChloeWatts.com

Friday, Feb 5, 2010

Chloe woke this morning after a long night of suctioning, to have her first shower of the stay. There is a special chair that rolls into the shower so she doesn’t have to stand. The only problem is that the chair is poorly designed with a metal brace of some kind that pushes in the middle of the back. So, neither Chloe nor Dana was impressed with it even though the shower was a good thing.

During the shower Dr. Cuyler tried to stop by to see Chloe. He would have been at the procedure today but he was already scheduled for another patient. He really wasn’t needed there but I think he just wanted to reassure Chloe things would go well. Dr. Steve did get to see us before we went down, and he spun a good tail for Chloe to hear. He is the co-doctor with Dr. Shih and will be on for the next month I believe. I like him quite a bit. He calls a spade a spade and doesn’t worry about making waves where they need to be made.

We were picked up just before 10 AM and shuttled down to the 2nd floor where the endoscomys are performed. As I reported, the procedure went well and Chloe was back in her room by 11:15. We waited for Dr. Marshall to talk with us before heading back up. He assured us everything went just as planned and that Chloe would have some short-term discomfort. He also gave us some paperwork on the care of the tube and told us it would be in about 2 months before she transitioned to an belly plug that is much more compact.

To Chloe, any discomfort, at this point, is more than a little. She had morphine and oxycodone and zofran and various times. Her scheduled Speech, PT and Art were all limited, at best. Jenny and Jewel did get some work out of her in Speech and PT but Katie just looked in, asked, and decided to let Chloe rest. She was pretty miserable. Even my stupid humor didn’t make her smile much. There were a few good eye rolls but not many smiles.

By the time I left, just after 8 PM, she was showing signs of coming around a bit. She was more expressive and was able to get on her side a couple times. The very best report for the day is that Dana and I only suctioned twice since surgery. We had hoped that the tube was the cause of so much secretion and, as of now, it looks like that might have been the case. She rested very well and didn’t need suctioning. When I did, all I captured was a few thin, clear droplets.

It will be very interesting to see how she sleeps tonight. It’s great she has the weekend to chill a bit, although we do still plan on getting her up and having her doing some activities. She needs to move more and more and I think she actually knows that. She works through so much adversity.

Blessings,
Ron

Friday, February 5, 2010

Here’s a quick update to let you know Chloe had her nose tube removed today and her stomach tube placed. This tube is placed from the inside out via and endoscomy. The total procedure from set up to take down lasted one hour. Dr. Marshall said there were no complications and Dr. Rose, the gas man, was good for many jokes before the procedure and efficiency during.

In six to eight weeks we will replace this bulky tube with a button that is almost flush with the skin. So, for now, she will have to be a little gentle with the tube. It’s sticking up and out of her belly just to the left of her belly button. I think it will be a bit awkward at first but I also believe it will give the throat a lot better chance of recovering the swallow.

We are going to make the rest of the day restful. She has morphine on board and we will probably nix the afternoon activities.

That’s all for now. Everyone is tired but okay.

Be well,
Ron

Thursday, Jan 4, 2010

No Blog last night…. I slept 6 hours… Off to the hospital for this mornings’ procedure to place a stomach feeding tube and remove the nose tube. Pretty good day yesterday with a couple walks and a couple wheelchair rides.

Wednesday, February 3, 2010

Although Dana didn’t get any sleep last night Chloe had a pretty good day over all. As usual she started out tired but by the time I was here in the afternoon she was kickin’ it. She is doing well off the mist and just on the nose, which is always good.

When Dana left for the evening she was shot again. It doesn’t take much when you go two nights in a row without sleep. I’d love to just go every other night with her but she just can’t leave that often. It would also be hard on Chloe.

Tonight Ms. C was pretty tired. We watched Monsters vs Aliens but she was fighting to stay awake. Like Mother like Daughter I guess. She stirred enough to take a walk with me at 8 PM. After that we played beach ball for about 45 minutes. Her accuracy is pretty good. The longest run of getting the ball right back to me was with alternating hands. She went 8 times in a row of perfect hits.

Dr. Steve stopped by just for a chat earlier. He just had a few of the normal questions. Then we are getting close to the new belly tube procedure. That will be 10 AM on Friday. Dr. Peter Scott is on board for the anesthesia. It’s always good to have friends on important teams.

Thank you to all the people who have responded to Karen Preston’s request for members joining Helping Hands website. This is for food delivery only. It’s an important function while we enter week nine. It’s crazy to be so nuts about food when the one suffering the most can’t eat at all. But it’s something that helps the caregivers during a time when we are all getting fried.

Cough assist is something we ask for every night before sleep time. I’m just so fed up with RTs. They come in and say they’ve worked with Chloe before and then they do something stupid like try and turn her in-side-out with the pressures on the machine. It was removed from the room today so the pressures were changed. The RT wanted to argue with me that her pressures never change. Then I had to tell her were the pressures were set. I’m sure it’s written someplace…. Not! These are RTs I’m talking about. There are very few that I have any respect for. The rest you have to watch like a hawk. And even then they pull something other than what you just told them. Aaarrrgggg! And I don’t have a good source to complain to about them. Their supervisor is the first one I asked to be removed from our room. The complaint we got was we are limiting the ones we will accept. We’ll, my solution to that…. TRAIN THEM. Every one of them does it different.

It’s not a good idea to tick me off when I’m writing the blog.  I guess it’s going to be a long night.

Be Well,
Ron

Tuesday, Feb 2nd, 2010… Two months into this adventure.

Today was one of those days that we love to see come by. Although it started out with a tired Chloe it quickly progressed to a bunch of good news.

While sitting there waiting for the meeting to start my cell phone rang. It was the business office looking for Dana. OHP came through for us!!! That means we are approved to stay in rehab where Chloe will get the best care.

Then during the meeting Dana asked that they get us a Versicare bed. This is the bed that goes to a level that Chloe can actually put her feet on the floor while seated. It took a bit of suggesting but they agreed to ask. It’s one of those things… we haven’t ever had them before… I suggested they check with our hospital neighbor who just had his daughter discharged on Friday. He works for the company that delivers these beds to area hospitals. They decided to check their sources first. Whatever works. The same thing happened with the trachs we wanted, so who knows. We got them.

After the meeting Chloe went to PT/OT. Dave was able to take her before he went to work so Dana and I had an hour to ourselves… sorta. We spoke with our favorite housekeeping lady, Shirley, for some of that time. She is such a bright light.

Then it was time to go take over at OT and School. When we got to the gym there was a sign on the door that Chloe was at the atrium gift shop. PT/OT had her out on a field trip. Her job was to walk in the gift shop, find certain items, get the price, write it down and later she would work with those figures in math and writing. Everything went well until Dave backed up into a display of ceramic blue birds on a metal leaf sculpture. The little birds all dove into the birdbath below, de-tailing one of them. Chloe got a kick out of that for some reason or other. By the time we got back to the wheelchair Chloe had been on her feet over 15 minutes! That’s a personal best.

We went back to the gym to finish things up. This was the first time Dana got to see Chloe do the stairs in the gym. It’s really great to see her manage them although she scared herself at the top by turning a bit quick and having to be steadied by Michelle. She trusts us all … to a point.

We did all of her morning activities with just the “artificial nose” that fits on the trach, and minimal suctioning. This makes it so Chloe doesn’t need the oxygen and mist tube. It frees her up to do the work. She is also just being spot checked for her oxygen intake numbers. Everyone felt very comfortable with her going without that line attached to her finger. Even more freedom.

In Speech she was taste testing again… with Pop Rocks. She loved these. Jenny had a hard time getting her spoon back each time she placed a few Pop Rocks in the different areas of Chloe’s mouth. Chloe would close down and make sure she got them all. Of course, then she’d have to spit them out but it was a new sensation for her. I got to see just how much more movement there is in her tongue. Although the tip is still asleep she is able to move her tongue side to side a bit and a little bit further forward. It’s all great progress even though it seems like nothing to Chloe.

When we got back to the room her bed was gone! In a short time David, our former neighbor, delivered her new Versicare Bed. This thing is a Cadillac. I’m not sure how they had to get it but I don’t really care. It’s one of those things that fall into one of my favorite lines… “Don’t question my methods, just my results.” So we now have a new bed, a new insurance, a return to rehab and some new trachs that weren’t supposed to be available at this hospital. What walls?????

The afternoon events went off without a hitch as well. I cut up a grapefruit for Dana and Chloe thought she like a taste. You should have seen her face when Dana put a little juice in the front of her mouth. She couldn’t really tell what it was she sensed but it sure made her make a face and jump. Both are good signs.

I had to leave for lessons tonight but Dana took her walking in the unit later. She did very well but was glad to see the wheelchair at one point. We hope to get her more and more involved in the later day activities so she gets out of her room more. Tonight was movie night and she actually went to the theater for a minute. There were Red Vines there. Tomorrow will be another speech tasting so I’m sure she will try those again.

Now my wish is that Dana and Chloe will both sleep well tonight. It was a long productive day and it felt like a new beginning for us. We will probably be here many more weeks but at least we know now that we can be and will be covered.

Be well,
Ron

Monday, Feb 1, 2010

It’s now two months since Chloe’s last full day of complete health. She has cleared many obsticles in this amount of time. We look forward to the day I can report it’s been two months since Chloe had a challenge with anything.

Chloe, after a long eventful night of suctioning every half hour, had a good day. She enjoyed the fact that she could throw her leg braces from PICU away. She also had a lot of playtime today. Some of the therapy was done in the room. She was able to walk with her walker and Michelle almost all the way to the Starlite room. That’s a pretty good jaunt. I love it when she walks in the unit, as many of the nurses haven’t seen her walk.

With Dana asleep on her feet, Kati decided she would be fine with the suctioning during art. So they sent Dana to bed for a while. This afternoon and evening the secretions have been thicker. This tends to be the case and I’m not sure why other than she is active all day. Yet a couple days ago they were very clear and thin in the evening. Can’t put our finger on it.

No word from OHP yet today. We sure hope there aren’t any stumbling blocks in the way. This will make things so much easier to know there is insurance with absolutely no cap in place. We’ve been told Healthnet doesn’t have a cap, however, nobody at the hospital has heard of a no-cap insurance in years. OHP is the exception. We already know that Healthnet will only pay the past 30 days of rehab so to get further rehab paid for we do need OHP.

It looks like Chloe’s next surgery will be Friday. This will be to remove the nose tube and place a stomach tube in. Then in six weeks we will replace that with a stomach plug. Then it’s just up to Chloe to regain the use of her swallow so we can get rid of the plug as well. The procedure is supposed to be pretty cut and dried with a limited potential for problems. I’m believing No Problems. We have had enough for one lifetime.

We certainly appreciate Karen Preston’s efforts to get food to the hospital for whomever is there. It saves a lot of running to the restaurant to see what they might have that’s edible. It’s a small rotation of choices unfortunately. Even the biscuits and gravy aren’t tasting as good as they did the first few weeks and the eggs are to die for… literally… you may just die if you have to eat them.

We have our Tuesday meeting tomorrow so, hopefully, we will have some word from OHP or, at the very least, a definite game plan for the future of our stay. Even with the vent gone there is a ton of stuff that we just couldn’t handle if we were at home. Home care nursing is limited and having someone in the house is just one more stressor Dana doesn’t need.

Recently I’ve received many kind words and thanks for this Blog. It’s intention has been met if it means as much to you all as it does us. Without it we wouldn’t have reached 27 countries, had over 22,500 hits, and had Chloe’s Peace Sun Tee Shirts in four different countries so far. We have a worldwide Prayer Team following Chloe. Daily I receive prayers from literally all over the world. We are so grateful. It’s also the only writing I’m doing lately so I thank you for that as well. It has also helped the staff here know what we are living, hoping and grateful for… or not…

Blessings,
Ron

Sunday, Jan 31,2010

Overnight last night went well. Chloe slept through any of the suctioning I had to do and that wasn’t too many. Surprisingly none of the machines went off last night. I think that’s a first. She slept in until about 10 AM.

Dr. Cockrell came in to discharge her from rehab and readmit her to acute care. Now we just have to wait and see if OHP picks us up to go back in Rehab. Emmanuel really wants her to stay in Rehab as there is only one other kid in there right now. This is a paperwork battle between the insurance company that Chloe has, Emmanuel and OHP. Dana has the paperwork in but there has been no decision made. It would be great if being accepted by SSI and by OHP were the same thing, but they aren’t.

What we were told in the meeting last Tuesday was “we are hopefully optimistic” that OHP would pick us up. What the heck that means is anyone’s guess but the body language was that of knowing there is a possibility of craziness in decision making. IF we are accepted it will mean that we will be in acute care on paper for a short time and then back in rehab.

Dana and Chloe had a good afternoon of stretching, weights, walking and being together. Neither of them is overly happy when they are apart. And put the fact that Chloe is bummed about being in the hospital during her birthday, things have been a little sad lately. She actually indicated she’d rather not even have a birthday celebration of any kind if she couldn’t eat. We’re working on that.

Dr. Cockrell was really surprised by the advancements Chloe has made since she last saw her. It’s been a few weeks and Chloe’s strength is way up there. I had her move her tongue from side to side for her after she noticed the tip is still stuck down. She was happy to see that improvement and noted that things wake up from the back forward and from the unconscious to the conscious. For instance, Chloe can swallow a bit if she isn’t being watched or thinking about it. It’s not enough to eat but it’s a start.

Karen Preston has put together a calendar on the Helping Hands website. If you’d like to become involved in some help for the family follow these directions:

1. Cut and paste the following address into your browser:

http://www.lotsahelpinghands.com/c/621517/

2. Once it takes you to the website, click on “Interested in becoming a member of this community?” and request to be added to the community.

3. After a coordinator adds you as a member, the system will send you an email with your *own* sign-in link. Click on the sign in link and follow the directions given there. (It will take 24 to 48 hours to be added, so don’t be alarmed. Your participation is appreciated!)

4. If you are unable to gain access doing the above, email Karen Preston at b2krn@yahoo.com for help being sure to retype your email address in the body of your email to her.

This should help quite a bit. BTW… when Dana is at home she is there for R&R. I know everyone would love to see her, me included, but she needs that alone time to rebuild for the next round of shifts. I’ve found that visits, by non-family, at the hospital tend to work best if they are 10 minutes or so in length. Anything longer than that and, depending on timing, she gets overwhelmed and exhausted. And she is too “nice” to let you know it’s running long. Maybe just telling her to let you know when she’s tired would make it easier for her. At home though, please let her have her space with no calls or visits unless set up in advance. I hope you all understand. It takes less and less time to become fried when doing 24/7 care.

I guess Chloe’s friend wore her Peace Sun shirt to school the other day and lots of kids want their own. Whomever wants one just needs to get in touch with me through ronhorton21@msn.com and I’ll send out the information.

Thanks to all of you who have helped through your actions and or prayers. Oh, and Chloe will be the name of a new filly being born soon in Wyoming. Thanks Cliff, that gave her a good smile.

Blessings,
Ron

Saturday, Jan 30, 2010

Saturdays tend to be lighter duty than weekdays, and Sundays are the day of rest… unless you’re Chloe. Before I leave at 11 am tomorrow she will have done her weight training and some homework if I can find where Dana put it. Dana will have her in the evening so I know she’ll have a workout.

Kevin came in to give Dana a hand today. He has the suctioning down pretty well now. Good to have another family member set up to suction. Sometimes just getting up is a challenge. Today has definitely been a get up often type of day with numbers jumping all over the place and lots of suction needed.

Dana and Chloe had some visitors today. Judi came by with some help for Dana and some love for Chloe. James and Daniel showed up for a visit as well. James is the one who is in charge of printing up the Chloe Peace Sun Tee Shirts. If you want more information about them you can contact me at ronhorton21@msn.com. I’d be happy to give you details.

Chloe is settling in for the night. The last walk to the can and benedril is on board. She will have a cough assist in a few minutes and then we hope for a long night’s sleep.

There are loads of prayers headed our way via email and we appreciate them all.

Be well,
Ron

Happy Birthday Chloe 2010

My Birthday letter to Chloe

Welcome to your 11th year, a sign of good luck someone told us recently!

The beginning: His words will never leave the air, not for me and his first name is all I recall. Peter. The announcement he made was joyful as it matched my deepest desire. He was the Dr. who delivered you.

“You have a Chloe!” were the words.

You arrived “barking”. I kid you not. It was not a familiar kind of crying at all. It was a distinct bark. You would grow to adore, ADORE dogs.

Colin had only wanted a sister. He never wavered….well till years later of course as he came into his own independence. Also, stashed deep in the closet of Colin’s room was a little denim outfit with roses on it. A purchase I had made, telling no one with hopes of a girl. One of your middle names just had to be Rose.

See? It was all intentional. As it is today.

INTENTIONAL.

Become intentional Chloe. Be intentional about who you are while you are using key after key to unlock the doors of healing your formerly broken body.
Become intentional inside your silence. Make plans. Feel and notice your feelings. The not so happy ones. Yes and know these too shall pass.

Become intentional about swallowing. Do it. Everyday. It is a practice towards the real thing. Wake up those throat muscles. You are powerful.

It doesn’t surprise me that you are stronger than all of us. You have such high integrity (I notice this every time you correct me when I say something which is not precise). The promise you made to Ron is why you decided to stay. Bravo to you both. Now we see so many pieces of our life puzzle fitting together. So many whys are answered. And lives saved, I suspect. I wasn’t present for that moment, to hear that promise made but what a present it has turned out to be.

You are more than you know and those whose ‘light’ is also on can’t help but notice and learn from your bright force. It’s simply blinding. I am honored to be your mother, your cheering leader, your person.

You belong in this world and today let me remind you how fortunate the world is.

The world is because you are.

Sammi (teacher at Emanuel) says, “Not one thing prayer cannot do”. She prayed for you while she was away in Nigeria. Nigeria? yes Chloe, the world is listening to your hearts desires and look what is happening as a result. You, nor I have any idea how your life is impacting others right now.

I have a felling people are noticing more and more how grateful they are to just breathe. Perhaps some of them say Thank you. Families are moving closer together. Ours is. Parents are hugging their children a little longer, saying and showing “I Love Yous ” with ease. Your empty desk remains empty as only you can fill it says your teacher. I suspect some forgiveness is also occurring. You have opened hearts that were sad, lonely or worse. There is evidence to support this.

We tease you about being a little Mother Teresa and yet why is that? Mother Teresa turned her back on wealth and an easier life to care for starving and sick people, especially children. She was a world teacher. What did she teach? One person CAN change the world. She also taught compassion and grace; As are you.

What is it James says about you? (That you have taught him) What would Chloe do? (He asks) Make it Happen!!

I say again…The World Is, because You Are.

I love you to the blue ponies!

Mama Mio
ps…Let’s look for the good things today! Happy Birthday!

Thursday, Jan 28, 2010

Chloe had a great night last night. She slept through all the suctions I did starting at 3:15 and running through when she got going at about 9 AM. So I guess I had a night like Dana has been having. However, I haven’t been doing it night after night.

In the morning the gastro doctor came to discuss the procedure of putting a stomach tube in vs the nose tube. It’s another surgical procedure and they had it scheduled for Monday. However, we were only in the discussion stage and didn’t mean for anything to be scheduled yet. He was great about it and said it just takes three days to set it up. He cancelled Monday. He also told me there were two different procedures, one that was done from the inside out and the other was more surgical and was from the outside in. The former is supposed to be the least invasive but it also means that it will be a two-stage procedure. The first would be a tube and would stay in place for six weeks. Then a plug would be placed. If we went the surgical route the plug would be placed right away but the procedure would take more healing time and has a few more risks.

I think we are going with the former but we are letting Chloe be a part of the decision. We also want her to understand the procedures and the benefits of each.

PT/OT was about an hour and a half and went well, although I believe Chloe was a bit distracted. She was in thoughtville throughout the workout. First up was paddleball with a beach ball. Next it was weight training while standing at her walker. That was going okay until she dropped a one pound weight on her toe. That set us back a bit but we did recover. After that her feet were covered by two layers of pillows. She didn’t drop another weight on her foot… but did on Michelle’s.

Then we were off to a set of stairs in the gym. She walked first to a chair at the base of the stairs. She rested a moment and then climbed the stairs. She did very well, although she thought she was going to fall over backwards at one point. There was no risk of that with Michelle right there.

She went on a scavenger hunt to finish the session. She walked out of the gym and down the hall. When she found something on the list she’d have to stop and mark it off the list. It ended at the bathroom. How convenient.

We were upstairs for speech and schooling. Speech is showing more and more signs of sensation every day. She actually said the coke was too strong today. And her gag response is coming more forward in her mouth. Every bit forward is a great thing.

School also went very well. She is doing very well in her math and is spending time writing her own answers. Her writing is getting a little bit better daily as well. Of course she won’t be satisfied until she has her pretty handwriting back again.

Dana stopped by for a little while during the end of PT/OT as she had a little more to take care of at the business office. Chloe sure liked seeing her. So when it came time to leave again Dana picked a busy time to say goodbye for today. Then tonight I noticed Chloe was emailing with Dana. Even though Chloe says Dana has to leave and get some sleep, she really would rather she stay all the time.

She has been on sterile room air almost all day with just a little change to oxygen before going downstairs for her hour with Margaret. All of her bathroom breaks have been on foot! She still won’t try it without her leg wraps but I think that’s coming soon. She is really moving quite well, all things considered. She can almost sit up by herself. And she motors right along with minimal support from behind. Still can’t get on and off the bed by herself but that’s probably because she really doesn’t know where her right foot is going at any given time.

We are hitting the hay a little earlier tonight to see if we can get a full night of sleep. She did pretty well but I’d like to see a little less suction needed. She’ll be on oxygen overnight. She will wake up tomorrow an eleven year old! Of course we all know she is actually Twenty-Nine.

Be well,
Ron