ChloeWatts.com

Nov 6, 2011

Up until Friday the jury was still out on Dana’s job at World Market. She went into this not really knowing what was going to be the reality of the situation. It turns out there was very little training before she was stuck on the register, alone, for a 5 hour shift. Then she was required to move really heavy furniture, some that required her climbing a 20 foot ladder. (Fear of heights) She was a mess. I’m mean, so much so that she couldn’t function when she got home. So, to the relief of everyone, she let the job go. She now feels like a huge weight was lifted from her, even though she still needs to fix her financial situation.

Halloween turned out to be a real bummer of a holiday for Chloe. She wanted to be M.J. but no jacket could be found and the hair color was sold out. Then, with everything else she melted down and couldn’t even answer the door to hand out candy. We HAVE to get her swallowing again, and Soon! With the unfortunate necessity to change insurance most things are mixed up pretty bad. The one good thing is that we still have Steve, her speech pathologist, on board. Kaiser can’t duplicate him so we got the green light to continue there.

Still no swallowing however. Steve thinks there might be something getting down so he will call for a swallow study in the near future. It’s either the tongue is not forceful enough to throw the food back or the opening is still too restricted to received the food. Either way it’s a big problem.

Colin is a red head for a while. He was going for a certain look at Halloween. He looks a lot like Ron in the H.P. movies.

While on the subject of Halloween. We can’t believe the new Gestapo Principal at Robert Gray wouldn’t let Halloween happen at the school. Looks like Valentines’ Day won’t either. I’m just waiting for her to cancel Christmas or require no-one to wish anyone anything but Happy Holidays. I might just have to make a visit. This kind of thing just sets me off a bit. The kids need some outlets. Right now there is no exchanging cards, no candy, no this, no that. It’s no good.

Dana and I are stumped on selling our houses. We can’t afford to take major losses here and fixing them up so they will sell is almost out of reach too. We will see what comes for the winter. If you know anyone needing pet sitting or clutter/life coaching please get in touch with us. I’ll be working for TSA pretty soon but that may be just seasonal like my other jobs. It’s a crazy world lately but we keep plugging away.

Dana had a water main break a couple weeks ago. She is really concerned at what her water bill will be next time as nobody could figure out where the shutoff was for way too long a period of time. There is a temporary patch on it now but it looks like we will have to replace the line from the meter to the house. Hopefully nothing will freeze before we can get that done.

The holidays are approaching fast. Our wish is that everyone will enjoy them, no matter what might be trying its’ best to get in your way.

Be well,
Ron

10/3/2011 by Dana

Ah….time flies even when not having fun. Summer is over. It was a working one, as well as one of loss. (miss you my dear aunts) And it was one of hope that was dashed…or changed for another time, regarding Chloe’s biggest wish, to swallow food.

Chloe’s second botox surgery to help her swallow occurred on Aug 11. Chloe said, “it worked the first few hours.” She could swallow and didn’t need the suction machine for several hours. She gives credit to the dilation procedure during surgery. Since then, we just aren’t seeing evidence, and she is not feeling any swallowing success.

Her insurance has changed and this makes for some transition… which is a nice term for stall. Kaiser, her new insurance, is for healthy people. I guess that’s about all I will say about that. I have Kaiser, but for Chloe it means losing her primary doctor Dr. Tomkoria. She is the one who led us to the discovery of the tumor. We hope to return to you in the future. She was our quarterback and contacted the ‘team’ in all manners. She and Chloe relate in a personal way.

On Sept 7, another MRI of Chloe’s brain was conducted at Legacy hospital. This time without full anesthesia. Chloe had a rough reaction to anesthesia a few months back. Too much anesthesia was given and she lost two days of a regular life. (oh, I must use that term lightly) This was Chloe’s choice. When that day came, Rick, the MRI tech, was having a bad day and made it his business to push his agenda on us. He was running behind and was not patient friendly in the least. At that point, a doctor came over to tell us a baby from upstairs was in trouble, needing our MRI time, and asked if that was ok for us to be bumped. We, of course, said yes! This would give Chloe more time to have an IV placed. The daymare went on…

Rick did not want to call a special IV nurse we had requested for Chloe. Her veins need a specialist. Rick tried to slip a regular nurse our way who had her own idea on how to place an IV. Chloe has had enough pain to endure 10 lifetimes, which is why we set up, well in advance, to have the special nurse.

What did me in was seeing Chloe’s face turn white while biting her lip. She began to accept her fate, follow their directions and then something happened within me. I stopped it! I stopped them all. Some force bigger than my 5′ 2” frame came forth and demanded we would be leaving with no preamble if an IV nurse was not called. (They are so specially trained). There is a special numbing cream they were to use and we were told it would take 45 minutes, and later told 30 minutes, for it to work. I knew the truth. I set it up and that’s what we were having. End of story.

Chloe and I were sent back into the waiting room with our scrubs on for 1/2 hour. Then an IV nurse arrived. Rick was still difficult throughout Chloe’s MRI. Afterwards he picked a fight with me inside the MRI area, raising his voice and pointing his finger at me. I ended the discussion with, “You can try and talk you’re way out of this, but the truth is we’ve not had a good experience here today”. All this time he was taking the IV out of Chloe’s arm, paying no attention to what he was doing. He was reported.

A writer writes what they know. This is my experience and it’s why I often do not write. It’s long and pain-wretched. This is not an easy story to read. I would not want you to live it, nor to witness it.

There were 2 long days of waiting before the results of her MRI scan. That Friday we were ushered into a room…but not just any room. Chloe reacted immediately and said her thoughts aloud. “This was the same room we were given the bad news in when that tumor grew back in 2009.” We waited 45 minutes…..finally…a doctor we didn’t know came in and somberly began asking Chloe all sorts of questions. We were not breathing. I purposely did not sit in the same chair as the visit in 2009, even though it left a space between Ron and me. Ron kept the mood light before the doctor arrived. Finally the doctor said, ‘Oh, and your scans were good. No new growth.’ Geez………………………say it first already please!!!!:) 🙂

That news left us on a high and a new wave towards Chloe’s goal, to swallow. Her speech/swallow therapist is working diligently on new ideas to get that muscle to wake up and to strengthen it.

Chloe has begun 7th grade and is handling the schedule pretty well. A new lovely language is making itself a new friend in her life, French. She’s excited about learning French, and this excitement is a first in quite a while. She is having friends over sometimes for homework time and doing some shopping time as her physical energy/strength improve.

Her nights are still beyond words. She dreads going to sleep. Ask her.
Personally, I look back at my journal and see how far she has traveled. But Miss Chloe runs weary of hearing this. It actually annoys her. Perhaps this is her time to be heard. Wanting to, at least, be able to swallow her own spit and lose that machine at school. This would be something we can’t even begin to relate to. Eating and swallowing would satisfy a need so basic and human that it’s a matter of survival, not just enjoyment. Socially…being able to swallow and eat will include her ‘EVERYTHING’ again. Just consider a birthday party without anything to eat? A holiday without food? If you could not eat, would it not be torture to attend any functions?

This is why I don’t write the blog. Raw. Way to raw.

Colin, our light in shining armor is doing very well. Learning to drive, working some, applying for new jobs, spending time with friends, as well as a special one, and preparing to be an outdoor school counselor, as well as taking the PSAT test soon…whew. He’s busy. I noticed it’s been a year since he and I went out to dinner alone. Way to long.

Ivey seems to be bouncing back amazingly from her Cancer bout over the summer. We did not pursue Chemo for her. It just wasn’t in the cards. We hope for her best and she reminded me today, running the cement steps at the school, that all is well. Ivey….you are the best dog-person there is.

Currently a job search is still in full force for me. There are some leads out there and I’m pursuing inside, as well as outside, my experiences. No words can convey how taxing this has been within this circumstance. There is an elephant who parks on me now and the weight is so incredible ….no one should know this. Somehow though, you know this…if you are human and still breathing. I suspect you’ve had elephants of you’re own. I’m just grateful for Ron, who keeps me calm and sane during an insane time. You are Good to us all and help make sense out of this. You keep the dream a picture, not just a sketch.

Till next time….

Take care, all of you. The world needs you well.
Dana

August 14, 2011

It’s been a long time since the last blog and I hope we still have our audience. We have had our plates full for quite some time now but this should catch you up a bit.

Chloe had an episode of sleep apnea/aspiration, that scared a bunch of us. She stopped breathing one night and the nurse couldn’t stimulate her for quite some time. It seems she had aspirated a lot of fluid into her lungs. Dana drove them all to the hospital in the middle of the night for an x-ray and consultation. She didn’t have to spend the night but we have been on high alert ever since. There have been no more episodes, however, she still desats numerous times during the night.

The latest and biggest news is that we finally had her botox surgery. It went well as far as the surgeon was concerned but we do have to wait about two weeks for results. That is about how long until we know if Chloe is really swallowing or not. We do know she has passed something by her esophagus, evidenced by some color when her tube feeds backed up. She just hasn’t known for sure that she is or not.

The interesting thing is that the first words out of Chloe’s mouth, when she woke up from the surgery were, “it worked.” So let’s all keep whatever we cross, crossed.

It looks like Dana will be pulling more night shifts soon as the nursing hours will be reduced starting in November. We don’t know how much but it will be quite a bit because she no longer has the trach. They actually asked if we’d consider putting the trach back in to justify more hours!!! Can you believe it?!

Another tough thing is that the insurance is being changed. This means we will have to break in a whole new team of doctors at Kaiser. It’s not something we’re happy about but it was not something that was planned. Boarders is going out of business and that’s were the policy was from.

Dana and I have had a few sales this summer in hopes of reducing our stuff so that we can get our houses fixed up and sold. Mine will go on the market ASAP. When it sells then we’ll start trying to sell hers while looking for our own home. More on what we find later.

Until next time please stay well. We’ve had too many notices that were not of the wellness kind lately and enough is enough.

Thanks,
Ron

6/29/11 The Ivey Saga

This week has been a real challenge, for all of us. On Friday Colin was at DMV getting his learners’ permit, even though he won’t be able to get his license until he has a different address. Dana’s wallet can’t afford the, close to $2000 increase in her insurance when he’s licensed. Chloe is still recovering from her aspiration episode and readjusting to the mask so she breaths at night. Kitty went to the emergency room with an infection that, thank God, was cured by hydration and antibiotics. Then on Sunday Dana left here to go home and find Ivey unable to get off the floor.

Now, for those of you who don’t know who Ivey is or how important she is to the family here’s a brief bio. Ivey Rose is a Jack Russell Terrier. Not just any Jack, but the Jack that probably had a lot to do with saving Chloe’s life. Her dog (God) energy was just right at all the right times during and after the worst of it. She’s been the one sleeping with and watching over Chloe like a … Jack Russell. So to say she is important is something like saying the Pacific Ocean is a wee bit damp.

Off to the emergency vet for her. The x-ray about floored Dana. There was a mass in Ivey’s belly the size of her belly! There weren’t experts on board that night so we were back to her regular vet in the morning. All of us were there.

With no definitive answers we scheduled her for surgery later that evening. Dr Amelia Simpson seemed like just the right fit for the job. The hospital… Veterinary Surgical Center of Portland. She felt that the mass was either on the spleen or liver and gave us all the options. Saying goodbye to Ivey, there was the chance it was for the last time.

However, Ivey being so like Chloe, surprised everyone by going through the surgery with flying colors. She gave up a spleen with a 3 pound cyst attached! At only 22 pounds regularly this was huge.

She spent one extra night at the hospital as they wanted to watch a heart situation that was of concern, but now she’s home where she belongs. We still have to wait for pathology results but everyone is cautiously optimistic. The bill being almost $4000 so far, we need things to be clear from here on out.

This was a draining week, emotionally and financially. How Dana has been keeping her head above water is something I can’t fathom. She attributes it to Dave Ramsey and the class I taught, but I think she is just the best money manager I’ve ever met. However, the emergency fund is gone now and she is still out of work. It seems she is well ingrained in the 10.6% unemployment here even with the loads of applications we’ve sent out. (It’s a blessing in disguise as she Must give Chloe the care she needs.) She won’t ask for help, but I’ll ask for her, without hesitation or fear of ridicule from anyone who doesn’t get the fact that she has Paid it Forward for years!

The Chloe Watts Fund is still available to anyone who would like to pad it. This is the name of a company I started two years ago that is designed to protect anything that is lurking, trying to stop Dana in her tracks. With thousands of hits on this blog worldwide, I know I’m not the only one who is in line to protect Dana, Chloe and Colin from financial disaster.

If you would like to make a donation or buy a Chloe’s Peace Sun Tee Shirt, just send me a note at ronhorton21@msn.com or ronhorton21@q.com (my email may change tomorrow thanks to Qwest) and I’ll send you the address. It can go directly to the account or to me. Paypal is also available. It’s not tax deductible but I know the Chloe team; You’re not in it for you.

Blessings,
Ron

June 14, 2011

It’s been a few days of antibiotics now and Chloe has responded to the drugs. She is still very depressed but did have a good day at school. It was her last day so now we will be officially on summer schedule….even if summer isn’t official or even appearing to be normal.

Nurse E has been tremendous through all of this. She checks in even when she’s not on duty and has a real vested interest in Chloe and the family.

Chloe hasn’t been able to wear her mask for five nights now but Dana asked her to try for just a little while tonight in order to extinguish her fears about aspirating again. Can’t say as I blame her for that. Aspirating spit is bad enough, but stomach acid had to have hurt!

She has a bit of a voice back now. She was so hoarse and sore that she didn’t speak for three days. Her computer is her main entertainment and, thanks to Colin loaning her the power cord, she has had almost uninterrupted use of the internet. I’ll be borrowing her computer for a run to the store soon. There are a bazillion power cords for these e-machines. I’d hate to order the wrong one over the internet.

Dana says that sleep is still not happening… for any of us. It’s kind of amazing how long a body can go on without sleep. We are all shooting for the Guinness Book of World records. Maybe if we break it we’ll start sleeping again.

Thank you again for all your thoughts, prayers and well wishes during our latest trauma. We don’t need scares like this one. Our hope is that, when the botox surgery happens, she will not wake up as often and that her breathing problem will start to resolve as well. Until then….

Be well,
Ron

June 10, 2011

It’s June 9th, late at night or early in the morning, and Chloe aspirated stomach acid into her lungs. The night nurse tried to get her to cough it up but nothing worked so Dana drove them to the Emergency Room at Emanuel Hospital. In-spite-of getting lost on a very familiar route, they arrived okay. The chest x-ray confirmed the aspiration.

Dana’s big job over the next couple days is to watch Chloe very closely to make sure this doesn’t develop into pneumonia. The antibiotics are available if the first signs develop. The night nurse agreed to take on Dana’s Friday night so that there are extra eyes on board, that are exhausted.

Chloe’s day today was uncomfortable at best. She is also very sad she couldn’t be at school for a play in which she was to perform. This probably parallels the first surgery, when she had to miss the last day of school and their party.

Her breathing is rattled and raspy. She also hasn’t been able to be fed. The doctors said to keep gravity working on our side for a while. I’m not sure of this response as I’d probably hang her from my inversion table if that were the case. She also can’t wear her breathing mask until things are settled. It’s a damned if you do damned if you don’t situation with that. The mask was probably the cause of the acid being forced into her lungs, yet she doesn’t breath on her own, on occasion, throughout the night.

We really need the swallow surgery to happen yesterday! That’s going to be the first step to getting things somewhat normal for her. Chloe has made so much progress over the past 30 months, however, this is one more example as to how fragile she really is. Dana knows better than anyone this fragility and has been the one able to sense just what she needs when she needs it. And she is unwavering in the face of coddling accusations and other judgments passed along. All in all though she Knows she is doing the right thing. THANK YOU Ma’Lady!

Friday the 13th of May, a fine day

Another day, another gift. Without further adieu, Chloe’s MRI results show No Tumor Growth! Dana and she have been concerned over the past while, as she has had some issues. I relate it to flying at night in a single engine plane. Every noise possible shows up in the engine during the dark hours. Same with waiting 5 months to have this MRI done and confirmed. However, it’s the news I expected and the news we were all wanting. Way cool.

Here’s the fun details of the day. Chloe’s weight is up from what we thought, as is her height. When Dr. Norwood’s assistant came in the room there was something on her mind and she seemed out of sorts, not coming right out with the news. This added to the drama, sort of like American Idol and who’s going home or not. After a short time she did indeed let us know the great news. Then we proceeded to amaze her with answers to her hundred questions to update the chart.

We left that appointment completely lifted up. Chloe so much so that she wasn’t going to let anyone pull her backpack equipment around for her and we headed straight to the third floor to show off.

When her social workers, nurses and Child Life people saw her they about fell over. Many had not seen her since discharge and we’ve come a long way baby! We went to the Hollywood Video Starlite Room to donate 3 movies Chloe wanted to give them. She sat and watched some of the ongoing cartoon on the big screen while waiting for another caregiver to show up. It was a lot of fun watching her beam.

After leaving there it was off to the snack bar for Red Velvet Layer Cake and Bread Pudding Cake, to give her something to taste after we got home. She prides herself on picking out just the right slices to bring home.

After arriving back home Colin advised us he was going to work. He mowed two lawns up the hill, one taking 3 hours. While he was away we bar-b-Qed turkey burgers. Dana and I then sat down for a movie, “The Next Three Days.” Highly recommend it.

Other than me with my broken ribs, it was a pretty normal night for a change. I think everyone will be sleeping a bit better tonight after this great news! You all, with your support, thoughts and prayers are a big part of Chloe’s success. Thank you!!!

Next up will be her repeat of the botox treatment to get the esophagus to open up, allowing her to finally swallow. That’s the only major thing left. Her crutch went bye bye a couple days ago. The leg brace she had is useless so we will try something else to help her regain her complete walking abilities. Her speech gets better each day even though there is only one vocal chord working at this time. And her left handedness is working for her right now. We will get her right hand working better also.

All in all we have healing going forth.

Be well,
Ron

May 5th, 2011

Well, yesterday we went to the swallow doctor. His news wasn’t what any of us wanted to hear, especially Chloe. Although it wasn’t terrible news it wasn’t what we expected. Chloe isn’t swallowing. This could mean she has antibodies that act against the botox, or, it could be that it just needs to be done again. He’s seen the same procedure produce different results a number of times.

Next on the docket is another swallow test to see what IS working. That will happen Friday. Then on Wednesday we will have her in for the next MRI to confirm there is no tumor anymore. Results will be on next Friday. Then it will be up to a couple doctors to decide what to do about her swallowing.

The big blockade is the bipap machine. This forces air into her at night because her lungs forget to fill up with air when she is asleep. The trouble is it also forces air into her stomach, causing nausea. This would be even worse if we get the top of the esophagus to open up. We really need it to come back on its own.

A big surprise to me was that the brain stem doesn’t control the esophagus. It has its own nervous system. He gave the example that if there was an esophagus on the table it would work just as it’s supposed to all on its own. Crazy. So, my big question is why then is it a problem since the stroke? If the nerves in the brain have nothing to do with the esophagus, why isn’t it working? I didn’t think of that during the appointment.

Chloe wasn’t in the best of moods after hearing all this news. She is so disappointed. We all are, but she tops the list. Even though she bounces back quickly it’s a shame she has to in the first place.

With Mother’s Day coming up I can only think of how Dana deserves Mother of the Century! She has been the rock through all of this and the river that has poured over her has taken its toll. I do what I can but it never feels to me that it’s anywhere near enough.

We’ll keep you posted. With my new job I’m trying to adjust my schedule to include everything, including the blog. Thanks for understanding when there are gaps in publishing.

Be well,
Ron

April 5, 2011

The Hummmm is going around. Chloe’s botox surgery went very well today. She was up and perky at 5 am with Dana and I dragging along with her. At 6 am we were checking in at the hospital and by 7:45 she was in the O.R.

As they were wheeling her into the O.R. they had to wait a minute as Chloe was updating her status on the computer…. “Surgery” is all she had time to say but it was enough.

By 8:45 they came to get us and said everything went just as expected. Now all we have to do is watch what happens. The botox isn’t expected to start working for, at least, two weeks but could be up to four weeks. Chloe is excited but bummed out about the delay.

Back home we all tried to keep our eyes open and get the day going. Soon after we walked inside the house the hail started and Chloe was back on her computer. I had to leave as I’m in the throws of starting a new job and doing the training for that job. It’s the type of job that gives me starters remorse, but I’ll do my best to get over that and start making it work for us.

So, keep the Hummmm going toward the goal Chloe has set for herself, swallowing ASAP. We really feel it’s just days away now.

Be well,
Ron

Pre-procedure Update 4/4/2011

Good rainy morning to you. I know there are many of you chomping at the bit to hear the latest news, however, there really isn’t any latest news. Other than Chloe really is trying to start using her middle name, Neva, more and more. She is also doing a lot of cooking. We may just end up with a dessert specialist chef on our hands.

Wednesday is the day we will be going in to have her botox injection. After that it will be two to three weeks before we know if it is doing anything. It’s objective is to relax the esophageal muscle enough to allow her to begin swallowing. I think 16 months is way too long not to swallow!

The trach being out has certainly made a huge difference in her demeanor and happiness. She even spent the day with a friend over spring break. That is HUGE. Being in public is still difficult, but getting better.

So, with that, I’ll just stay, stand by to stand by. I’ll update as to how the procedure went. The MRI will be coming up very soon as well and I’ll fill you in on that news too.

Be well,
Ron