ChloeWatts.com

Tuesday, 12/8/09 mid-day

Chloe is sleeping well now. Earlier Dana and I were trying to find a comfortable position for her and she was getting a bit frustrated. However, she showed me how much movement she has in her arms and legs now. This is great to see. Let’s keep this healing Growing.

Dr. Tomkoria dropped by. Unfortunately Dana had run home for a quick relax time but Chloe was able to acknowledge her and give her a little smile.

Dr. Huffman also stopped by to check on things. She had spoken to Dr. Dorsen earlier and everyone is still very excited about Chloe’s progress. That’s what we like to hear!

She is being fitted for some sleeping boots so her feet don’t droop down. They took one feeding tube out of her mouth today. And tomorrow morning, around 9:30 am they will take the Ventilator tube from her mouth and rescope her vocal cords. Although they are saying there is a possibility that a trach may have to be placed I feel we have just as much, or more, of a chance that the cords will work just as they are designed to work and Chloe can be tube free.

I’ll be updating either later or tomorrow after the extubation. Keep the faith. Keep the prayers. We are moving in the right direction.

Blessings,
Ron

Tuesday 12/08/09

Here’s a quick update before I run over to the hospital.  Chloe had a restful night with sedation.  She has so much anxiety over the three tubes in her that all she wants to do is pull them.  She’s getting her wish tomorrow on the big one, the ventilator.  The tests came back okay for them to rescope her throat tomorrow to see the vocal cords working exactly like they are supposed to work.  Dana told me they are, right now, pulling the small stomach tube that is down her throat.  She will still be tube fed thru her nose tube.

So here’s your job tonight.  Blast out the prayers to see Chloe swollowing, coughing and breathing just like she is designed to do.  See the vocal cords working just perfectly!  See the doctors finding there is absolutely no need for a trach and they laugh that they ever thought there would be.  They, but not the rest of us, have underestimated the power of Prayer and Chloe.  Now let’s get to work.

Blessings,

Ron

Tuesday, 12/8/09 Early…

It’s the beginning of day six and, like Dana said, it seems like a hundred. The good part… we do have to look for those parts… is that Chloe had a pretty good day today.

She spent it with PT and OT visits that worked on her recovery exercises. She did pretty well from what I saw. She has a long ways to go but her effort was great to see. She seemed to like it. Of course this may be because she had a visit from Jake today!!! When Patty brought the golden retriever into the room and Jake jumped up on the bed with Chloe she lit up like the sunshine she is. She pet Jake with her elbow as it was closest to the dog. I wish I could have been there for that visit. When I mentioned it to her later she lit up again and I actually saw her smile and that Chloe Twinkle in her eyes. She loved that and we know how healing is for her.

The next time she lit up today was when Celeste, from the café, showed up with a 1000 piece puzzle of Twilights’ “Edward.” Celeste loves to do puzzles and when Dana and I were down at the café she was putting this puzzle into a bag. When we saw it we told her that Chloe was gaga over Edward. Then Celeste showed us her other puzzle…. All Coke products… Dana’s décor in her kitchen. That was just nuts that she’d have the two puzzles that meant something to both Chloe and Dana.

Well, Celeste showed the puzzle to Chloe and told her she was putting it together for her and would glue it before she gave it to her. I guess we’ll have to find a good frame now.

Later, when Dana was sitting on her bed, Chloe reached over and held on tight. She was making sure Dana wasn’t going any place. So Dana sat with her for quite a while with her hand on her chest and singing to her. Chloe looked very peaceful. God loves these two more than even I can comprehend. Dana said it was wonderful to see Chloe’s eyes like they should be today. There was actually life in there today even though her calmness was in part due to the medication.

Dr. Dorsen was in again today. He’s the only doctor I know that doesn’t take the weekend off. Glad for that! Anyway, his 6’ 4” or so frame came into the room and all 4’ 9”+/- frame of Sandy who shushed him when he let his booming voice come out. She shuttled him out into the hall because Chloe was resting and that’s what she needed most at the time. It must have been a very funny sight to see. Sort of like a cat herding the cowboy. In any case, Dr. Dorsen is still very optimistic for a full recovery. The next hurdle will be removing the Ventilator on Wednesday or Thursday and having the vocal cords working just perfectly so that Chloe can breath, eat and talk normally. That’s the number one focus for the next few days please.

Dana and I finally had a date night tonight… out in the hallway with ice cream cups and Scooby Doo dog bone graham crackers. It was just Dana, Me and Richard… the “Fred Factor” janitor who has been doing this job joyfully for over 20 years. We should all live our lives in his spirit.

Be well and be with our blessings,

Ron

Sunday 12/6/09

There has been some confusion caused by an old automatic message that goes out anytime you send an email to Contact Chloe. This message said Chloe was home. That was from last time she was in the hospital, 2008. The blog is still the most current information and we certainly apologize for those of you who received that bogus email.

Sunday is supposed to be a day of rest… but I guess not for Chloe. She had a restful night last night but about 5:30 am the agitation began. This is good and bad as I’ll explain in awhile.

She is mad, very, very mad. She didn’t sign up for all this and can’t figure out why she has to go through it all. I can’t begin to imagine how frustrated she is. She went into surgery as a normal 10-year-old happy girl. She didn’t have any symptoms and took us at our word that she needed the surgery. But she also thought it would be no different than last time. A day or two in PICU and then out to the third floor and home in a couple weeks was what she expected. The surgery Was Indeed Needed but she will only believe that when she is up and about.

Never in our wildest dreams did we foresee the Ventilator and Partial Paralysis. But that’s what we are facing. She can move her left arm and leg pretty well and she flails around in complete frustration. Her eyelids are getting better and so is her vision. She can now hold her eyelids open for a longer period of time and I didn’t notice the eye shake of the last few days.

Dr. Dorsen came in this morning to see her and was very impressed with her movement. He sees as I do, a complete recovery in her future. She is still in one heck of a mess but I’ve seen improvements that just help me believe even deeper that we are going in the right direction.

Dr. Dorsen also thought the anger was a good thing. It gives her some movement but it also shows she wants to get on with it, now, not later.

All day she had blood pressure problems so they medicated for that. When I arrived at the hospital around 8:30 pm she was resting well. About 10 pm they ended up waking her for some regular maintenance. From then on she was back in mad mode. We just couldn’t make anything work for her. She doesn’t want anything we ask if she wants. She just wants the tubes out of her and to get out of bed.

Colin was finally able to come in to see her today. Even though he was prepped for what to expect he took on a look of complete shock when he saw her. He didn’t even feel he could get close to her. We know he’s very wrapped up in his sister even though he may not say it. The reality seemed to be just a bit much for him.

Tomorrow will be a full day for Chloe. She will see all the PTs and will have a workout. I don’t expect her mood to be any better after all that but, at least, she will be working her limbs. She was able to move her right side some today. That’s another indicator to me that she is going in the right direction.

It’s 2:30 am so I’ll keep this update short.. and I’m sure I’m forgetting some things. The main thing is that Chloe is a fighter. She is fighting everyone and everything. I say, Go For It Girl! The doctors can only do so much. Chloe is still in charge.

By the way… if you were on the receiving end of my teeth today please accept my apology. I’m hanging on by a thread as are the rest of the team members. My fangs came out way too quick today.

Blessings,
Ron

Dec 6, 2009 Midnight

Chloe is resting fairly well this evening. She had to endure yet another tube down her throat. This one is a direct feed tube into her stomach. In order to find if it’s positioned correctly they take an x-ray. She will be having her second one about 12:30 pm. Dana spent some time working her legs and massaging them with lotion. Then she lightly dry brushed her legs and scratched her back. This seemed to be a hit with our lil’ one.

Dana was able to get home for a short visit with Ivey and to dump spoiled food. We aren’t there long enough to eat most days and there isn’t a fridge at the PICU. When we finally get to the 3rd floor ward we will have more freedom of choice as far as food is concerned.

While at the house Dana came across the letter Chloe wrote to President Obama. Most of you know that she is a Make-a-Wish kid and has been able to join in some of the local events held by the organization. Some of you may not know what her “One Big Wish” is that will be granted soon. Chloe wants to meet President Obama and it is mutual now. She has 20 kids in front of her that will be going but she will get there in time. By then she will be well on her way to continuing her active kids self.

She was also able to meet some of the cast of Twilight and New Moon. When they heard her wish… the wish of a ten year old… they were amazed and she became the hit of the party. The other 10 kids that were there all had similar wishes… to go to Disneyland. Not our wide-awake Chloe. They huddled around her like she was the star… as she is.

So here is the letter she wrote while 9 years old, almost 18 months ago:

Dear President Barak Obama,

My name is Chloe Watts. I am 9 years old. It was awesome to find out you won. Your win was by a longshot. You have made history. Everyone will remember the election of 2008.

Many kids are in the hospital at this very moment. I was one of them last summer. That’s another story though. Most of the kids’ parents don’t have enough money to pay for their child’s medical expenses. I would be so grateful if you lowered the cost of all medical procedures. I’ll bet you one million dollars that you love your girls. What if you ran out of money and couldn’t pay for your girl’s medical bills? That would be a big embarrassment, wouldn’t it?

Thank you very much for reading my letter. I hope you think about what I have written. If you would like to get more details on my situation please visit: www.chloewatts.com, though I recommend that you click on the pictures and videos icon or go to youtube video. I had a brain tumor that was why I was in the hospital last summer.

You rock!
Sincerely,
Chloe Watts

Now is that cool or what?! She wants to meet him and continue this conversation in person. Man, will she have something to say after this stay!

Dana is so right. This is pertinent to today. I was happy she found it and brought it to me to put here for all to see. It speaks volumes about Chloe. She’s a pretty big soul.

Blessings,
Ron

Sat 12-5-09

I’ve not been back to the hospital yet today but here’s what Dana updated me with.

Chloe had the procedure today to try and remove her from the ventilator, however, when they put the scope in they saw lots of gunk and not much action with the vocal cords. So they intubated her again and want to wait a week to see if the swelling going down makes enough difference to allow her to be without the ventilator. He tended to believe there was a chance of that. This means that they will try again in a week. In the mean time she will have the tube in and also be tube fed.

What happens if it’s the same as today? Then the plan is to do a tracheotomy. I don’t want to see this happen, but I do know it is much more comfortable than the tube down the throat. I think it would give her hope a boost as well.

I should know a bit more in a few hours. I’ll be with her later on this evening.

Someone asked about Colin.  He isn’t able to go in to see Chloe due to the hospital age restrictions during H1N1 but he has been to the waiting room the past couple nights.  He light up when we told him the tumor was gone.  I know he’s involved but I’m not sure what he is truly feeling as he masks very well.  Outwardly he seems to be doing very well.

Blessings,
Ron

Dec 5, 2009 – Early

Chloe had a very restful night with the right meds. Dana and Sandy were also able to get some sleep due to being able to sign up for a bed in the Quiet Room.

This morning, however, Chloe was pretty frustrated and agitated not being able to make herself clear to Dana and everyone. She knows what will go on today and is pretty scared. I can only imagine. I’m scared for her as well.

So, what will happen today, is that at 12:30 noon she will be brought to the operating room. At some point they will relax her to just above sleep and remove the tube and insert a scope to look at her vocal chords. The chords are left and right, activated separately by the brain, and control the opening and closing to breath and swallow. What they want to see is that there is movement in both sides, in which case they will leave the tubes out.

If, by some chance, there is some paralysis in either side they will intubate her again and give that area more time to recover from the stroke she had. Again, this is as far as I’m going to project.

To recap her problems: She is on the ventilator because the first attempt to extubate failed when she couldn’t continue to get good breaths. She did breath twice and coughed once before she began to ingest mucus and they had to re-intibate her.

The stroke she had was small but in a very significant part of the brainstem. This area in adults takes longer to recover from than in children, however, neither is a quick fix and the extent of recovery is unknown. We are hoping for 100% and leave it at that.

The stroke makes it so she can’t keep her eyelids open. Her eyes, although getting better quickly, tend to shake so she is unable to focus well. This is also associated with her sensory problems. The stroke was right side and the swelling is left side. So her left arm and leg have mobility without feeling and her right side is limited mobility with feeling.

What this means is there is a lot of therapy in her future. How much and how long is anybody’s guess at this point. Our first priority now is to make sure she can breath on her own without the tube inserted.

Today is another big hurdle to clear so let’s get the energy flowing and make this happen for Chloe. She is our light and you all are her switch. She knows the support that is out there and loves everyone for being with her.

Blessings,
Ron

12-4-09 PM

We are now at hour 57 of this radical trip. This is like a football game, maybe the Ducks vs Beavers game. The score flips back and forth constantly yet there is only one final score. That’s what it’s been like for us. We have flipped scores back and forth over the past 57 hours and we are still only in the first quarter.

Here’s a review. The kickoff: Surgery prep. All went well and everyone was feeling as comfortable as possible. The return: Dr. Dorsen took an aggressive approach to the surgery. The tackle at the 30 yard line: Dr. Dorsen presents post op to us and paints a grim picture. First down: Chloe wakes up and scores big by beating the odds maker. The kickoff: Chloe is breathing on her own so the decision is to extabate her from the ventilator. The tackle at the 10 yard line: Chloe almost drowns during the effort to relieve her of the tube. She was re-intibated. The score flipped. The kickoff: Chloe hits the wall. The tackle: Dana demands different medicine for sleep. First down: Chloe, Dana and Sandy get some sleep.

We are still in the first quarter but I’ll get out of the example now. Today we received some amazing news and some disheartening news. Chloe’s tumor appears, to everyone, to be gone. However, so is 3 mm of her brainstem. She had a stroke and although Dr. Dorsen felt it wasn’t a factor in the current events the neurologist did tests and decided it most likely was a big factor. Chloe has motor function, sensory function and eye function problems which are probably a direct result of the stroke. She also is on a ventilator.

That being said, the doctor felt comfortable that, within time, Chloe would regain most or all of her functions. This will require much theropy, effort and time. The testing was very interesting and informative. For me it opened up possibilities that may have been questions before. It made me feel very confident that the tube problem of yesterday will probably be something we can correct sooner than later. Just remember, I’m no doctor.

Tomorrow we will try again to extibate her. It will be in the controlled environment of the O.R. That way they can get a good look at the vocal chords and determine the damage and what it was from, nerve or irratation. After that we will have a much better idea of what we are facing.

Optomism has been the projection that I have been feeling with those who have been testing Chloe. I’m probably the top optomist in all of this. Going into the surgery I had the distinct belief that the tumor would be removed. I also felt strongly that there would be some complications but that these would be surmountable. Maybe I just changed my mind when I looked over at Chloe. She is probably the biggest optomist. Her fighting spirit, positive attitude, joy, cooporation… is all an inspiration to everyone she is in contact with. She remains the number one healing medicine in this entire process.

Put all the prayers on top of what Chloe can provide and we have the reciept for the winning play of this game. When the final score is posted I’m betting on Chloe: 100, Visitors: 75, and the broadcaster will announce “Fred has left the building.”

Blessings,
Ron

Friday 12-4-09

It’s now Friday afternoon and there has been a lot of information shuffled our way. Some of it is very good, however, as Dana put it, we don’t want everyone getting excited about the good news when Chloe can’t breath.

What we have is Chloe sleeping right now and still on the ventilator. Why we weren’t able to extibate her yesterday is a mystery that we should have some answers for tomorrow about 1 pm.

They will bring her to the OR to try to extibate and also to look at her vocal chords. There are many different possibilities that I won’t go into because it would be guessing. What we need is for everyone to see the vocal chords working exactly as they need to work.

If everything is working as it should after they pull the tube then she will be allowed to breath on her own. If there are problems they will re-intibate her and watch her progress for a week. That’s as far out as I want to project at this point.

There is some gunk in her one lower lobe of the lung. That is being treated and, hopefully, it will be resolved before the procedure tomorrow. Our best case is that she will come back upstairs without tubes.

The other things discussed yesterday concerned the vision and surgery site. The vision will be addressed with a neurologist today. It could be from pressure. That’s an uncertainty.

The other thing that happened was that Chloe had a right side stroke. It was called unconsequential by Dr. Dorsen. What exactly that means isn’t clear.

Problem number whatever… she has left side swelling at the surgery site. This could be causing some of the many problems she is encountering. She is on steroids, antibiotics and pain meds. All of these have side effects as well. So to say one thing or the other now is a guess.

The best news we received was about the tumor. As I stated in a former update, we couldn’t see the tumor, just where it was before. The radiologist did his high scale search of the MRI and concurred with we laymen. He couldn’t see it either.

This is the part Dana doesn’t want everyone jumping for joy about when there are so many other problems remaining that could be short or long term problems. It is good news that the tumor isn’t wrapped up in and out of the brainstem though. If we hadn’t been aggressive we may have had more problems down the short road.

We are a long way from home free. We plan to take the Prayer Train out of this wilderness though, so All Aboard!

Blessings,
Ron

Friday Morning 12-4-2009

Last night got ugly about 10:30 pm. Chloe was hitting the wall because she was fighting the tube and wanting to go to sleep. Dana finally when on the attack and demanded a new course of action. They listened and took action. At one point Dana suctioned out Chloe’s mouth and nose. You remember she uses that devise at her work so it’s pretty easy for her.

Dr. Quint ordered new meds for Chloe and she was finally able to get some rest. In the morning they took a chest xray and the ENT Doc was there to check things out. There isn’t a temperature, however, due to her drowning episode yesterday she did aspirate something into her lungs. Not a surprise.

The next time they try to take the tube out it will be in the operating room. They will also look at her vocal chords at that point. There is a possibility they could have suffered some paralysis, which would make breathing and talking difficult. We just don’t know about this right now.

Her vision is also a big concern for us. This morning the report is that the eye shaking we have seen is subsiding but we don’t know if the vision is getting better. The first day her eyes were going to white with all the unsteadiness. Yesterday they were not flailing to that extent, and today is even less. That’s a good sign.

I wish I could put more good signs in the blog but reality is reality. Chloe is in trouble and we’re trying everything we can to get her out of there. We knew going in there were possibilities we didn’t like but we refused to believe they would occur. Now we are refusing to believe they will remain.

Blessings,
Ron