ChloeWatts.com

Monday, February 15, 2010 .. Happy Birthday all you Presidents

After a pretty good night Chloe and Dana had a full day. It was filled with PT/OT and Chloe even brought her therapists to show them she could play the piano. I’m so going to have her do that for me! I would have been there today but it seems my furnace has decided to die while my repairman is away for a couple days. My fixing ability is limited on furnaces I guess. Or the new part is defective. Oh well… it’s not freezing at least.

After the regular day they were off to Mind/Body, a class they both like. It’s taught by a man who had a child there for a while. I haven’t joined them there yet but they both look forward to it each week. The instructor calls Chloe’s right side “the adventurer.” Chloe likes that. I’ll be looking for a better definition of what he means tomorrow.

Chloe had a good friend visit today and they played beach ball for quite some time. It’s probably a good thing for her close friends to visit and see what she is like now, so that when she goes back to school there won’t be a bunch of surprised faces for her to look at.

Colin had surgery today on his toe. It’s been a constant problem for a few years now and he’s had multiple surgeries on it. Apparently they did two permanent things to the sides of the toe that are supposed to help. Let’s hope so. Tomorrow he will be headed to Corvallis to perform with his choir and then with a combined large group. We saw the performance last year and it was pretty cool. I guess we’ll be missing tomorrow night though.

Did everyone see the youtube Colin did? It was his new version of the video he made, “A Strong Little Girl.” http://www.youtube.com/watch?v=n5qtYc7lqAM He did a very good job on it. Just click on it or copy and paste it to your browser if the click doesn’t work.

Chloe is asleep very early tonight, probably because she had a full day. I’m expecting to find they had a great night. I’ll be there after my dentist appointment at Dana’s friends’ office.

Be well,
Ron

Sunday, February 14, 2010

A pretty up day overall after a pretty good night as well. Lots of visitors during the middle of the day and Dana was supplied with a few choices of food. Mitchi brought a huge heart signed by all the Girl Scouts as a Valentine’s gift for Chloe. It must be impressive as it’s covering the MJ poster.

There aren’t any activities scheduled for Sundays so Dana and Chloe get to make it up as they go. One thing Dana and Chloe did today was to go downstairs exploring. They went to the heartbeat café and found samples of bread pudding and whipped cream. Some of this will be saved for taste testing during speech on Monday. Whipped cream is probably one of Chloe’s favorite staples and she’s considering the bread pudding as the first food she will be allowed to eat after her swallow comes back.

After the heartbeat they decided to go to the children’s garden. They made it outside just minutes before the rain started. They stayed and had a blast. The first time I ever met Chloe was in a downpour at the church picnic. She just stood under a high down spout and got soaked. So I know she likes the rain.

They went back to the starlite room and watched a Disney movie before going back to the room. Chloe had asked me to check “The Wizard Of Oz” out for her this weekend. For those of you who don’t know, it’s a theme for them. The funny part of this is that Dana had brought some ruby slippers from home, to remind Chloe that she has the power all along and there’s no place like home.

Dana also brought her a couple pictures from home. One was of her learning how to walk, all the while screaming her lungs out. Dana titled that one “My Life Sucks Right Now.” Chloe loved that. She also brought one of a 2 year old Chloe sticking her tongue out. This is up on the wall for inspiration. We need the tongue to work like that again.

Later in the day Chloe took a walk from the room to the starlite room and back again with the walker when her dad came to visit. She was actually up with just the artificial nose on her trach and no extra oxygen or mist. That’s pretty good.

Dana was able to witness what I liked about the RT Jessica today. Although Chloe opted out of a cough assist, Jessica did do suctioning on her and was able to clear some very thick secretions.

Chloe has been sassy and feisty the last couple days. I’m her favorite punching bag and I love it. If I can be part of her PT/OT, all the better. Dana got her today by teasing her that she needs to stand more upright so she doesn’t look like a little old lady with her walker. I’m sure she got the “face” for that comment.

During later on Chloe had one of her Blue Times. We’ve spoken with her about these to assure her it’s quite okay and normal to feel down and disappointed. I can’t even imagine what I’d be feeling like in her shoes. Luckily she does come out of these pits and gets back into her lively ways.

Here’s part of the days’ outing that was fun to keep for last. Dana wheeled Chloe into the “creepy chapel” on the first floor. There is a piano in there so it drew them in. At first Chloe was timid, but in a short while, she sat and used both hands on the keys, finding out what she really CAN do. Dana says it was a “cool moment.” I wish I had been there.

They went to sleep watching skating on the TV. It’s great to have these good days in our adventure. Let’s see more and more of these.

Be well,
Ron

PS. I didn’t even get to see my Valentine today but we did talk on the phone.

Saturday, February 13, 2010

It all started the other night when the RT and Nurse assured Dana, more than once, and adamantly, that Chloe was safe with her trach leaking air from her nose and mouth. She was not safe. She was secreting into her lungs for 18 hours. Arrogance has no place, especially at a hospital and more specifically when it involves our Chloe.

Yesterday was a mess with fatigue and suction needs. Late afternoon and evening the secretions were so thick that it plugged the 10fr catheters on a few occasions. Then all night long it was 10 to 15 minute breaks between suctioning. This was all, night, long. By 5:30 I had to let the RT Jessica and nurse Joanna take care of the suctioning. I watched from the windowsill but moving wasn’t happening.

Lucky for Chloe she didn’t have anything on the schedule until 12:30. She slept until about 11:00… as the word “slept” is used very loosely. The secretions continued into the speech therapy. Then OT/PT we started slowing down but it did continue throughout the afternoon.

This morning, early, Drs. Shih and Cuyler both dropped by. Dr. Cuyler checked the cuff and site. The result of the sputum sample didn’t show anything at that time and, later, I was told there wasn’t anything that looked out of the normal.

Dr. Shih was his typical jovial self. Between his comic relief and his thoughtfulness it’s a help having him around. We discussed her case but nothing earth shattering came of it.

We finished up the therapies with a few games that she stood for mostly. This came after a good but not exceptionally long walk. The weekend team didn’t know Chloe’s progress too well but, with my description, they were able to go at a good pace.

This afternoon Chloe finally started reading her books again. She does have The Wizard of Oz to watch with Dana sometime this weekend. We will have a new nurse tonight with the hope that the night will go smoother. As of now we are still doing more than a reasonable amount of suctioning but, at least, it’s thin.

Okay, this blog rambled but that’s what you get from a non-slept out writer.

Be well,
Ron

Friday, February 12, 2010

Hang onto your hat, I’m about to write the blog, and it’s not going to be something you’d expect. Chloe asked for cough assist tonight for the first time since the Feb 3rd incident! So I was all poised to make sure everything went perfect. RT Jessica W. showed up and assessed the situation. She asked the right questions, listened to the answers, had zero EGO and performed to my high expectations. I had to let her know how much I appreciated her professionalism and told her it was a very rare thing lately.

Last night was one of those regular RT times. The new trach was filled with air after the change. RT wasn’t around for the trach change even though it is a trach they seldom see. I guess they weren’t interested in the procedure or in getting familiar with something that may be the trach in their future. In any case, based on the past, Dr. Cuyler chose to use air instead of saline or sterile water. He felt that would work fine for her. However, during the afternoon and evening the cuff was deflating and by nighttime there was air leaking from Chloe’s nose and mouth. Both the nurse and RT told Dana, twice, that Chloe was safe. She wasn’t. She was secreting into her lungs. The entire night was tag team suctioning. By morning Dr. Cuyler decided to go with saline in the cuff. That halted the problem but the secretions had already caused trouble.

All morning long she was a suction frenzy. Her energy level was down to zero so her progress today was minimal at best. When I took over at 11am, and headed for speech therapy, she was about asleep. Jenny was surprised anyone would say air leaking is normal or safe. While those two were doing their speech thing I read the directions for the Bivona trach. There is a new warning listed in the directions that says air permeates the silicone cuff and that sterile water should only be used. This is something someone in RT should have known when they ordered it and then delivered it to us. Instead they just brought it to us with no instructions that using this would require anything different than what we had. Dr. Cuyler has enough to do without having to stay on top of equipment needs changes, so, once again I place the blame squarely on the shoulders of the RT department.

I let Chloe sleep through her first hour of scheduled PT since she wasn’t able to function. She was a little rested after 2½ hours deep sleep. We went to OT as Rev. Barb showed up for a visit and to deliver a great dinner. We delivered Chloe downstairs and backed off so the three therapists could work directly with her and help her to feel safe without a parent there. All went very well.

Art was next and she did well with Kate. I wasn’t called in to suction once during either session. By 4 PM though she wasn’t too thrilled about going to the Starlite Room activities… but we went anyway… for a little while. She made a heart and we left to get her back in bed. She slept well for another hour.

At 6:30 PM she started the non-stop suctioning with very thick, pasty gunk. That lasted 45 minutes and she finally decided she’d like cough assist for the first time since Feb 3rd. Unfortunately the assist didn’t produce anything but fortunately it was performed just as it should be.

She had a late bath and when she came back she was bringing up quite a bit of phlegm. It cleared well and she was able to go right to sleep after getting her nighttime meds. We are looking forward to a great night.

Be well,
Ron

Thursday, February 11, 2010

Depression. That’s what I saw in Chloe this morning, total and complete depression. It’s a look that can just break your heart. She is so done with this trip! She can’t see her progress for the vision she wants to be. It’s really sad.

Last night was a mess with lots of suctioning and little sleep. Dr. Cuyler decided today would be a good day to do a trach change to see if we had a gunked up track. I’m sure a lot of what was bothering Chloe was the change. They have been very hard on her up to now. And today is a day Dana was going to go home for the night. That also very hard on her.

Dana was able to go home for a time, but, with the trach being changed, she needed to be back at the hospital by 4 PM. The change was scheduled for between 4:30 and 5:30. We asked for Adivan to be on board so Chloe would be out of it by the time the change was done.

Back to the morning now. Chloe went through PT/OT with a lot of success, even though she was wiped out both physically and mentally. She had another very long walk and was able to accomplish many tasks with minimal help. She can now sit fairly straight up without a therapist holding on to her. They are just next to her now in case she completely loses her balance. Standing and walking are also with minimal therapist assistance and the walker. She is trying so hard but she still doesn’t see the progress.

Jenny saw quite a bit of lateral movement with her tongue during cold tests. This was very exciting and promising. We also heard earlier that Chloe is a very challenging swallow test for them. Of course, she has been a very challenging everything test for them right from the start and look what she’s accomplished!

During our afternoon sessions we met with her teacher and Psych. There we discussed a plan for getting her back into her school and what all that would look like. Chloe was finally out of her funk and was very involved in the conversation. She is using text to speech on her computer, but we do need to get in touch with Larry Lake as he has offered to help with a better program. If you know Larry please have him call me. I’ve lost his contact information.

Mama showed up just before we left the school discussion. Chloe was very happy to see her. We went to the room and had the Ativan given by 4:20. Dr. Cuyler was running late, which was a very good thing, but not late enough. The medicine didn’t do what it was supposed to do, so we gave her some more. Then we gave her Oxycodone. She just wouldn’t get groggy.

Dr. Cuyler waited as long as he could but then it was time to get through the procedure. I’ve never seen Chloe so scared in my life. Dana had promised her she would be out of it before the procedure but she wasn’t going to be able to keep that promise, even though she tried with some firm delaying words. I knew it had to get done but didn’t really like the fact that we were going to go back on our word. All we could do at this point was to try and calm her enough to get through it.

Dr. Cuyler prepared for the change. Dana had Chloe’s hand. Nurse Pat helped steady Chloe. I had the suction and lubrication ready. Then it happened. Dr. Cuyler, in one swift, smooth move removed the old trach and, even without the need for lubricant, he inserted the new slim trach in place. We were done in a matter of 5 to 6 seconds. Then I had to dive in with a lot of suctioning, as there is always a huge need for this after a change. The rest of it was easy but Chloe took some time to calm down. The suctioning took a couple hours to calm down. No matter how smooth it goes there will always be a lot of color. This is something that really worries Chloe but it’s really normal… if you can think of a plastic tube being shoved through a hole in your neck and down your throat, as normal…

When I left tonight about 8:30 Dana and Chloe were cuddling in the bed and Chloe was pretty much asleep. We’ve decided we are starting the medicine two hours before the next trach change. With all that she went through she was more focused on forgiving Mama for not being able to stop the change until the meds kicked in. She comforted her over and over again. She is such a good person.

With luck there will be some sleeping going on at the hospital tonight. They both need that after what they went through this afternoon.

Be well.
Ron

Wednesday, February 10th, 2010 — Crystl’s Birthday

With the change in medications Chloe and Dana both had a good sleep with no suctioning. However, it appears the ying and yang prevailed during the day. Chloe woke up wheezing and needed saline to get enough moisture to get suctioning to produce results. Then, throughout the day, she needed more and more suctioning.

This all put a crimp in Dana’s plan to stay out of PT/OT and the rest of the therapies as much as possible. There were too many times when she was with those who are not suction trained. That meant Dana had to stand close by. Then Chloe had a new PT person today. But between suctioning and bathroom time they only had a few minutes together. Bummer because I hear it was a good fit.

Dana said Chloe made Blue Flubber in OT today. No, I have no idea what happened with that. I didn’t hear she bounced off the ceiling though.

This afternoon was the first Bingo game they actually went and sat through all three games in the Starlite room. She needed a lot of suctioning but mission accomplished. I haven’t heard what she won yet.

With Dana not participating in the PT/OT as much as usual I think Chloe was a little bummed out. She is pretty depressed, “because she is here.” Who can blame her? I think we need to find some really fun nighttime activities and take the food network away for the most part. I think it’s working against her.

It was really funny to hear again today that my blog has people on the edge of their chairs. Letters are one of my specialties. They are much more powerful than a blog.

The suctioning is winding down for the evening. That’s a very good thing. Maybe she just needs to get used to the new meds. She was having “chin” pain tonight. We are hoping that is from nerves waking up.

Be well,
Ron

PS Happy Birthday Crystl.

Tuesday, February 9, 2010

Today counts as a good day… The night, not so good though with little sleep and lots of bells and whistles keeping everyone awake. However, the morning PT/OT went great. Maybe Chloe was trying to impress everyone for Michelle’s sake. We will miss her on the team for sure but we want her to take good care of herself and her preemie son.

I met up with Dana and Chloe a little after noon as they went for a stroll before returning to the room. They actually found some sun on the second floor deck. Not that either of them need any vitamin D or anything…

At 1:30 we were off to more PT with our newest member of the team who hadn’t seen Chloe since when she first arrived. Well, I think we impressed her quite a bit. Chloe walked over 190 feet, with only one break!!! Then she got on the big three wheeler for the first time and rode it for about 10 minutes. She didn’t say but I think that was a highlight for her. She so loves riding her bike at home. So putting on the helmet and putting the feet to the pedals had to feel very familiar, in a good sort of way.

Next we had a 30-minute break so we went in search of more sun. No luck this time but we did get some outside time. The fresh air of a fairly warm day was great for her. It was sweater weather for the girls and tee shirt weather for me.

School was last on the list. That was 2:30 to 3:00 but we didn’t have the right homework so we used what we had. We only had about 20 minutes before we had to go to the weekly meeting. Turns out they were ready for us 20 minutes early. That’s a first, as they usually run over.

The meeting was a good one, filled with lots of information. We have a “Target Date” of March 10th for going home. All that means is that we are shooting for having Chloe ready enough to bring home with the least amount of care needed… which will still be a lot. However, we also found out we will be able to get nursing help at home and school.

During the meeting we also discussed the lousy nights. They are changing Chloe’s medicine at night in order to help her sleep better. We now have the monitor volumes down as low as they can go. They still are monitored at the nurses’ station so we haven’t reduced the safety any. Most of the monitor alarms are false but they still need to be addressed and they still wake whoever is staying.

Another concern was addressed and pursued after the meeting; the call button issue. We are still trying to get them to make sure, for everyone, that if there isn’t a response when they ask, that they send someone in the room immediately, and announce they are coming. In a real big emergency Chloe was told to rip the call button off the wall and a Big, Big alarm goes off. That’s fine if she has the strength to do so in the middle of a major emergency. We just hope that time never comes.

Facilities had to be called this afternoon because Chloe’s TV volume didn’t work. This is the second time since we’ve been here that’s been a problem. It’s also the second time that we’ve been helped out by John Z., or Jazz as he likes to be called. If you’ve ever read the book “The Fred Factor” then you’ve read about Jazz. He sure is a joy to have around. He’s been through it all and he is still quiet and smiling the whole time he is doing his job. He earned a Kite award today for sure.

Starting tomorrow we are taking a lighter version of what we have been up until now. It is the next step in getting Chloe more independent. She will be at PT/OT, Speech and School now without us hanging out. That will give her confidence that she is safe with others. Right now she knows we are there to protect her. However, she is showing, daily, that she is getting better.

Dana had shrimp tonight so that helped squelch her appetite. And I got her a couple of her favorite Wendy’s Jr. Bacon Cheese Burgers with no Mayo. That should keep her until tomorrow. No Mayo, No Cottage Cheese or Cream Cheese… those are about the only restrictions for Dana. No nuts or peanut oil for me but I’m able to eat elsewhere so the only thing we need to know is if there is anything like that in any of the food so I can opt out of the meal.

Thanks again for all your continued help and support.

(Larry Lake… please get in touch with me. I lost your contact information. We need help with the text to speech on Chloe’s computer. The program we have doesn’t have any volume.)

Be well,
Ron

Monday, February 8, 2010

A huge factor in Chloe’s progress has to be her PT therapist, Michelle. On Saturday Michelle gave birth to her baby boy, very premature. We were very upset to hear this and we are asking for our great prayer team to add Michelle and baby Thaddeus. His lungs need to grow as he is having some very big respiratory problems. Join us in prayer for Michelle and Thaddeus that all turns out perfect for them.

Other than hearing that news we have a great day to report. Dana heave-hoed the RT department by sending the last RT machine packing today. As I’ve said many times before, the respiratory therapy team is broken. It’s broken from the top down and needs a complete overhaul. Not needing them anymore is a blessing.

Chloe took her longest walk to date and she spent 3 hours away from oxygen. She needs less and less to keep her numbers up where they should be. Jewel did the walk assist with Chloe. She does a fine job with our girl and will fill the gap left by Michelle being away.

Dr. Steve is really active. Whenever there is a good suggestion he’s on it right away. He even ordered a 3 AM suction and tube drain so that sleep wouldn’t be as broken for the overnighters. He is also the reason Dana and Chloe were able to salute as the cough assist machine was wheeled out of the room.

Dana warned me that the entire weeks menu at the large café is terrible. So if you feel like jumping on the Helping Hands website and signing up for a meal delivery, this would be a great week. It’s kind of amazing that a hospital has to cut food quality and times in order to make a profit. My belief is that it should just break even and be kept as a service to the staff, patients and families. Make the money on the medical and break even on the services.

Dana and OHP had a meeting today and Chloe is considered a “fragile child.” This means there will be nurse support at both school and home when we get to bring her back to the house. This is a huge relief. With the amount of assistance we provide for her with staff on hand, it would be impossible alone. Nobody would ever work or sleep.

And the final word of the day, Chloe wheeled herself in her wheelchair for the first time. It wasn’t too far and it was still a bit of a challenge but she did it. The right hand received some assistance with a new peg added to the rail. That makes it a bit easier for her to control. She so wants to be independent. This is a step in the right direction.

Thank you all for keeping us in your thoughts and prayers. It certainly helps.

Be well,
Ron

Sunday, February 7, 2010

Her favorite activity is still beach ball. She is getting quite good at hitting it with either hand and kicking it with the left really well and the right pretty well. Her name was the only one written on the ball so I added Mama. Then I added Ivey and Firebolt. Then she asked “Where’s Colin?” And she wanted me on the last slot but I figured I’d let Dana add that one.

Overnight was a success for her more than me. She slept through a lot of suctioning. It was clear but loud. Think of someone snoring. That’s what it sounds like when she gets flemy. It doesn’t take much to clear it but you still sleep with one eye and one ear open.

Today we did homework and entertained a few visitors. The nurses were really happy to see the frosted sugar cookies Patty W. brought in before the game. They were little footballs. I told Chloe that Mama would probably let her taste test the frosting. She can do that as long as she doesn’t swallow it.

I had to leave after the first quarter to go teach my class. Dana walked in just as I needed to leave. This is our life lately, but Chloe’s worth it. Unfortunately we are still fighting one battle at the hospital; the battle of the call button. Chloe rang at 6:43 tonight and there was no reply, just a “can we help you” and then they hung up. At 6:49 our nurse made in to the room. Now, fair be it all, she was probably with another patient, however, SOMEONE should have come to the room immediately and someone should have said they would be right in. I thought we had this problem fixed but it’s obvious we don’t. So it looks like we’ll have another talk with everyone.

Colin has auditioned for a singing solo for state this year. I think it’s down in Eugene. Good for him! He also bought himself a football… and one of his friends kicked it on the roof of the high school. I guess the janitor will have to make a trip topside to get it for him. Just having him buy a football floored me. He hasn’t shown interest before. Change is the only thing that is constant they say.

Let’s hope Dana and Chloe have a good night tonight. They sure did two nights ago.

Be well,
Ron

Saturday, February 6, 2010

Well, today was a day of control the pain and keep the spirits up. The night was the best so far, with both Dana and Chloe sleeping all night with only two small suctions needed. That, I’m sure, helped today’s results.

Activities were limited with speech and PT/OT being done in the room. She took a few trips to the bathroom and her walking is coming along. I’ve noticed she is getting her feet to pass each other on a regular basis, rather than just bringing the back foot to the front foot. She is also getting her right foot flatter on the floor than before. It used to come down on the outside edge of her foot most times.

She has spent a lot of time on her computer today. Everything from cooking websites to her own website were all perused. I’m sure Mama has received a few of the latest recipes.

She has needed a bit more suctioning this evening but I think we are still in for a much better night than I have seen in the past. Then, during her tooth brushing, I noticed her tongue movement was much more than I’ve seen in the past week. We keep making progress towards our final goal, perfect health.

Be well,
Ron