ChloeWatts.com

Monday, Dec 14th, PM

Today was a bummer for me personally, as I woke up feeling as though a cold was brewing. Tonight I think I have a handle on it but I’m not taking a chance with Chloe. It’s the wrong night to take off however, since Sandy left for home today and now Dana will have to pull a double shift. This is something she definitely doesn’t need. I think I caught things in time to be able to get there early tomorrow and give her a break.

Chloe had a hard workday. Dana has been concerned with the number of chest x-rays they have done on Chloe; Rightfully so as it’s been many. That little body of hers doesn’t need that much radiation. So the new PICU doctor agreed to limit them. She’s had 24 x-rays and scans. However, there is more stuff in her lungs. The number one concern with that is she could develop pneumonia. She already has an infection in there that they are fighting so we don’t need the big bad ugly one!!!

For some reason today her heart rate has been pretty high and the BP has been way up there. They are treating her for the BP with meds but I’d like to know why it’s up there in the first place. It’s far enough out from the surgeries that I’d think it should have settled down by now. It comes down but I don’t like seeing it up to 158/130 +/-.

She was in a chair today for over four hours and breathing on her own. At the end of that, PT saw she was beat and left but OT did some work with her. At the end her O2 was down to the high 80s rather than the 100 where we are comfortable. When that happens she needs to take some deep breaths or she needs to go back on the machine.

Our wonderful cheerleader rep, Sarah, came by today and made a “Journey Bead Necklace” with Chloe. For the number of days she was brave she held up 10 fingers. For the number of days she was angry she held up 10 fingers. For the number of days she was scared she held up 5 fingers. She gets beads for each of those feelings and she also got a special “Spirit” bead on top of it all. Like Dana points out, she’s a Fighter; same number of fingers for Brave and Angry.

This report is a 5pm report and Chloe’s BP is now 143/76, still high but not as scary. Her heart rate was 133 and is now down to 128 but up from 109. She does this roller coaster all day. At this moment she is watching a DVD, “Charlotte’s Web.”

Earlier Dr. Dorsen arrived and was “practically jumping up and down” per Dana’s report. He did a Rah, Rah, Rah with his arms and said today was a day of high excitement. For him this is a Biggie! He was ecstatic that she went 4 hours off the machine. “That means she can go 6 hours and more.” As he was leaving he told Chloe this: “Chloe you know we love you and its important for those we love to do well…that’s your mission… to do well.” That’s another Biggie for Dr. M.D. Way to go Aussie.

So that’s what I know from afar. It’s all I can do to keep myself from going to the hospital tonight but I know it’s better safe than very sorry. I wish we had Scape set up over there so I could talk to her at least. Maybe I’ll work on that and see if I can figure it out.

The plan is to get her to the unit after the trach change on Wednesday. So let’s all see that happening. If you pray, pray. If you visualize, visualize. If you use Voodoo, use Voodoo. I don’t care what you call it, as long as it works. They said we could expect one step forward two steps back. I say we can expect three steps forward and a little sway toward the rear if needed.

Blessings,
Ron

Monday, December 14, 2009… Day 12 post op

Okay, so that backfired. Now back to Chloe. Last night, after I left, something really sweet happened. Dana said to Chloe, “I wanna climb in bed with you.” Chloe made a motion as if to move over so Dana took the clue. She got in bed with Chloe like Chloe does to her at home. She almost fell asleep just like that. When Dana asked her if she missed being hugged Chloe nodded. So Dana held her as best she could, avoiding all the hoses and monitor wires attached to her. It was Chloe’s first night without a sleep aid medicine. (It doesn’t get much better than that.)

Today’s early report is that there is a new doctor on PICU for the week and he’s really with it. They will have Chloe in the chair, off the ventilator, and wheeled about for her first outing since arriving in PICU. Off the vent for two times at 4 hour stints is pretty good. She breaths quite well on her own but they do keep the O2 flowing at 40% to keep her levels up. The short-term plan is to get her transferred to the third floor unit after her trach change on Wednesday.

After she moves it doesn’t mean Party Time. She will still need her rest and she hasn’t been too open to visitors yet. We’ll see as the days progress. We are also so aware of the need to keep her lungs safe. She doesn’t need to get sick with the flu or a bad cold. She’s had a cold for a while now based of what we’ve suctioned out.

The head of RT… the Air People… tried to get Chloe to talk today. He reduced the cuff on her trach, which allows the possibility of speech. She tried but nothing came out. We still need more movement in her vocal cords. This is where we need all our focus. I know this is more than possible. We rewire ourselves daily so, with the speed Chloe does things, this will be done in short order.

Sandy left for home today, for a much need and deserved break. I’ll take her shift tonight with pleasure. I’ll try and kick Dana out early so she can get some quality sleep. It doesn’t take a rocket scientist to see she needs the rest. Grandma Lee is coming to town tonight so maybe she’ll be able to take a shift or two as well.

There will be more information later as I get the reports.

Be Well,
Ron

Sunday night 12/13/09

Today was one fairly hard to describe. Chloe says that if the days are rated #1 as the best and #10 the worst, this was a #8 day. Sandy met Dana this morning, mouthing the words, “Sad, very, very sad.” She did have a restful night however, the rest of the day has been just a somber awakness.

The peak parts of the day were when she received pep talks from the doctors. It seems they carry more weight that we parents who, she may feel, are just saying things to make her feel better but without much truth to the talk. Dr. Dorsen’s right hand man, Tony, did a fantastic job explaining the rewiring process of the brain and nerves after the delicate brain was disturbed. Dana says she was very attentive to all he said.

They set Chloe up with a hand call button instead of the thumb press button. It is much easier for her to push and is very sensitive to the touch. She was able to use it three times last night. She probably loved the new responsibility.

Dr. Maya Hunter stopped by to deliver a card and a spiny blue ball, from her great friend Michiko, that is made of material that grossly resembles a reluctant bugger. In fact, I named if for Chloe, and she loves the name,… the bugger yoyo. It can bounce like one of those paddles with a rubber band and ball or she can squeeze it and it blows a bubble out of the interior that resembles a… you got it… a bugger bubble. She was bouncing it really hard and it slipped from her hand, bounced off the wall behind her bed and retreated under the bed. Her expression was priceless when she tried to follow its flight. Then she smiled wide and long. It was a great silent laugh. In a day that had been so sad this was wonderful to see. BTW… Dana asked me not to refer to the blue ball as a bugger yoyo so will the readers please disregard the previous reference to the blue ball as the bugger yoyo.

Sandy was awake and available so Dana and I planned a short getaway to her house for a cleanup and wind down from a hard 11 days. Dave was here to visit with Chloe so we took Colin and went to the house where Dana was able to finally spend some time in the tub and we were able to eat something other than hospital food. The lemon chicken and mashed potatoes was perfect. And Colin got a look at the new paint job in his room that he thinks is very cool. Thank you neighbors.

Make-a-Wish dropped a few pick-me-ups off while we were gone. They never cease to amaze me with their devotion to their kids. It’s been wonderful being associated with all of the volunteers.

During the day Chloe has been getting cough assist procedures. This is a process of giving her a shot of air in her lungs and then the tech does a quick suction to get any of the gunk that passes where it shouldn’t. Yesterday the culture they examined showed a low-grade infection so they now have Chloe on antibiotics in order to stay ahead of the problem. They call it a low-grade infection but any grade in her condition is, as far as I’m concerned, a major situation that needs immediate and intensive action taken. We still plan on bringing a perfectly health little girl home with us in the shortest possible timeframe. As it is now we should be graduated to the third floor by the end of the week. If her vocal cords would wake up by then I’d call the week perfect! They are the key to everything.

Sandy is finally going to take a break tomorrow and go back to Canada and try and salvage a mess at her job. She has been amazing with her overnight caregiver shift. I’m on call now for that shift if we need it to happen. Dana is still the #1 person on this team.

It’s 9 pm now and Chloe is finally getting a bit tired. She will have one more cough assist at 10 pm and then will be given a little something to help her sleep the night. The eyes in this chair are essential when she is asleep as she doesn’t have a voice and her coordination isn’t good when she’s awake much less asleep. I wouldn’t feel comfortable leaving her alone during that period of time.

Thanks to all of you for your support. It’s Chloe, the fighter, Dana and Sandy the protectors. I’m the gofer and writer. I appreciate the fact that there are many who like my writing but please, it’s only writing… something I do in my sleep. I don’t need the praise. The other three are the ones much more deserving and the ones I hope all your energy is focused on.

Blessings,
Ron

Saturday, Dec 12th, 2009

I think Dr. Dorsen must be reading the blog because today he came through with some good news. (Oh, okay… he’s had some before too…) When he heard that Chloe had mouthed the words back to Dana he was VERY ENCOURAGED, as this has to do with the sub cranial nerve #7, which is the facial nerve and has four components with distinct functions. It’s an easy Google search if you’d like to take a look. This link has a pretty easy to understand function of this nerve and is, again, very encouraging to me as well. http://www.med.yale.edu/caim/cnerves/cn7/cn7_1.html

Chloe has been in good spirits today and has been smiling quite a bit with her nurse Linda. Linda even found the right combination to get Chloe to wear the support boots she needs while staying in bed so long. They were driving Chloe nuts the first time we had them on her. They now fit right.

Dr. Larry Sherman, a personal family friend and Captain on the Chloe Team, has been all over this case from afar. He is a “brain guy” and was emailing Dana throughout the night with information and offers of answers if she or the rest of us need them. This is most helpful. It’s always good to have an outside set of qualified eyes and thoughts following us.

Speaking of which, Dr. Peter Scott shows up ALL THE TIME for Chloe. Even when we were at the radiology department waiting to get tube place, there was Dr. Scott, watching over us. Thanks so much Peter! It means so much.

Chloe’s classroom cards have come in and she will get to see and hear them through the weekend. This is huge. Having her spirits high is going to speed her healing. We have very high obstacles in our way and anything we can get to help clear them we are going to accept. This is ALL ABOUT CHLOE and we are very clear about that.

Heather wrote a very sweet email to us as she walked on the beach Chloe so loves. She called it Chloe’s Beach, and so it is from now on. Dana recalled the visit we had there on the last weekend of November. She sees Chloe flying her dragon kite and running after Ivey, who had to go say hi to everyone she saw. She also, as I do, sees Chloe doing all that and more, over and over again, until she’s too old to run.

We not only can, but we Will Do This, and you all are a part of the process.

Blessings,
Ron

Update to the next bloog… 12/11/09…

I’m going to pick on Doctor Dorsen’s statements a bit in the next blog but please don’t misunderstand that for not liking him. He is the man! Without him we wouldn’t have Chloe. He has been as surprised as anyone that things progressed as well as they have and it was his hand, guided by God, that took that tumor away. He is a great surgeon and very fine man. I feel he is so disappointed in not having a perfect outcome so far that he keeps trying to prepare us for a worst case senerio.

Friday, Dec 11, 09

Today was supposed to be just another day of healing. As it turns out there have been a lot more unexpected events happen. Chloe had a pretty restless night… no sleep. At about 7:30 am she finally got some relief but it wasn’t long lasting. When I arrived she looked very depressed and solemn. Dana was with her and Dana had sent me many updates from the morning visits by doctors.

Dr. Dorsen has been the most discouraging of all the doctors as he paints the picture the darkest. However, every picture he has painted Chloe has added bright yellows, blues and reds. When the tumor was classified as inoperable Dr. Dorsen went in anyway and Chloe did very well. When he told us that he chased the tumor into the brainstem and that she may not wake up… Chloe showed us that the tumor was gone and she did indeed wake up. Now he is saying that because Chloe hasn’t been able to cough she may not get off the trach and that phenomena is a serious side effect she will face. Well, this afternoon she did the next best thing to coughing with a belly burst of air and yesterday she was swallowing a bit.

We may be facing high odds once again. The breathing is our main concern and she is reconnected to an assist machine that lets her breath on her own but adds a little support when she needs support. They have been able to suction some of the junk from her lungs. They are going to try something new tomorrow. Tonight, though, they are letting her sleep with a little helping drug.

At about 3:30 pm today they brought Chloe, Dana and Me down to radiology. Chloe was getting a weighted tube placed in and below her stomach. It was a weighted tube and it was placed by a Radiology Doctor who did an amazing job. It went right where it was supposed to go with very little coaxing. With the relaxer drug they gave her she breezed through the procedure. It’s about time. It was interesting to watch the pictures as the tube was directed to the right place. Oh, by the way, this doctor said it was mostly luck if he got the tube to go where he wanted it on the first try. I told him Chloe was spanking all these bad odds in good fashion. So, go ahead Michael, keep the worst case scenarios coming… Chloe is ready for them.

Before the tube was inserted Chloe was pretty down. Dana asked her how her spirits were and she got thumbs down. What happened next was nothing short of wonderful. Dana asked if she would be able to bring her spirits up after the procedure was done and Chloe nodded she would. Promise? She nodded yes. Then Dana said the line she and Chloe are famous for sharing. “I love you to the blue ponies”… and Chloe mouthed “and back again.” Dana lit up. She has not tried to use her words up until that point in time. To me it said, here we go again… we’re clearing another hurdle. She’s amazing.

Our nurse today was great. He really knew how to talk to Chloe and explain things so that she understood. He also had a great sense of humor with her and she liked him a lot. He and the RT tech worked well together and I feel the amount of oxygen and the way everything was placed was done just right. I also got to watch my first dressing change on the trach. It will be much easier after the site heals a bit so that the panic of it falling out is taken away.

Sandy and Dana are exhausted and have hit the wall on a few occasions. I feel helpless in finding an ease to that situation. When I go home at night I sleep but I get up in the morning and don’t remember going to sleep or feeling like I’ve slept. It’s a crazy time for all of us but it much have a meaning. Chloe is stronger than any one of us separately or all three of us together. I don’t care what the naysayers come up with, Chloe will find a way through all of this. She will be 100% again sometime somehow and we will all be amazed.

Blessings,
Ron

Thursday, December 10th, 2009

This wasn’t the kind of day any of us needed. The morning nurse left a lot to be desired as she got behind the pain meds and then left Chloe in a soaked bed for over two hours. With all the frustration she and the rest of us have, we didn’t need that. Then there was an out of control cleaning lady that jumped all over Dana because the laundry basket was too full and the CD player was in the wrong place. Like any of that was Dana’s job in the first place. Then we had a charge nurse that was a bossy b—h.

All in all we are about to bite some heads off. Especially with the kind of day Chloe had! She had pain in the morning after not sleeping most of the night and day. Then she thrashed about most of the day in frustration. They gave her a PCA button to push for pain and it turned out to be too much. Her breathing went to hell.

Dana and I had been able to leave Sandy with Chloe while we went to hear Colin’s play. At the time we left Chloe seemed pretty good after a terrible morning. So we didn’t feel bad about leaving. However, she had so many visits from doctors, nurses, PT/OT, etc., in the afternoon and evening that she just got way over stimulated.

When we got back her blood pressure was higher than I’ve ever seen anyone’s blood pressure. They believe it was a neurological episode and not anything that was caused today. It did come down relatively soon. However, the other problem was that she is unable to cough which means her lungs have some gunk in them. They aren’t terrible but we want to make sure they don’t get that way. They are keeping her on assistance overnight and will re-evaluate her in the morning. We are also withdrawing the bulk of her pain meds in order to see if the breathing comes back to normal. We think this is suppressing it and causing problems.

Chloe is strong. She can pull your arms away from your body and she kicks hard when frustrated. Her coordination is terrible though. It takes a lot of concentration to make her hands go where she wants them to go. The left is what she uses almost exclusively. This is something PT/OT is working on with her.

In the morning we are hoping to see her pass the swallowing tests that will be done. We need to get her to be able to swallow. That’s the first step toward eating. The vocal cords are part of this process as well. They need to come back ASAP!

The other thought is that Chloe is getting too stimulated with too many people trying to help her all the time. It was decided to test out the practice of having just one family member in the room at a time and for that member to sit in the chair and only call the nurse when something seems amiss. At first they suggested we all leave and Dana about came out of her skin at someone. There is no way we would Ever leave Chloe in the room alone. This is just not something anyone should ever do with any of their loved ones at any hospital. Was I clear on that point?

It’s late and I’m going to try and get to the hospital a bit earlier tomorrow. We are all working toward the same goal, a perfectly healthy Chloe. Thank you all for your thoughts, prayers, concern, help and love. We will get there.

By the way, Colin was excellent in the play. He was a British marketing man and pulled the accent off to perfection.

Blessings,
Ron

Thursday, Dec 10, 2009

This morning I opened the blog and read what I wrote and wasn’t very happy with it. I guess lack of sleep leads to lack of detail.

I mentioned we all went to lunch on the Candle Lighters… not so… Chloe wasn’t present. Although we do have hope, Chloe is still unable to eat, swallow, talk or sing. This is a big detail I left out. This makes Chloe and Dana extremely sad as they sing together often and talk constantly. I’m convinced this will come back but it’s going to take time and effort.

I’m not at the hospital yet so I don’t know how her night went. No flash reports so my guess is they kept her comfortable overnight, as per the plan. When I left last night Chloe and Dana were both very sad. They want, so much, to join their voices and, right now, can’t. This is my current prayer request. Let’s hear those two together soon!

More updates later.

Blessings,
Ron

Wednesday, 12/9/09

Chloe is frustrated but calm. She is off the ventilator and is breathing on her own with only a humidifier hose up against her trach. We have had some good moments with some of her silent laughs when either Mama or I said something stupid. She also liked the story of Sandy and me waiting for three hours until Barry and Heather left… only to find out they had left 2:45 minutes earlier… Duh.

The Candle Lighters held a lunch for all of us. Pizza and pasta with a side of cookies… hit the spot. Dana and Sandy hadn’t eaten all morning.

Interesting about the surgery schedule today. Chloe Rose and Sadie Rose had their surgeries back to back. She’s 7 but we expect the two Roses will bond before long.

At one point tonight we had to change Chloe’s bed as it had some intermittent electrical problems. So Dana and I held Chloe up and the nurses slide one bed out and one bed in. It was a little awkward but everyone managed.

One problem today was her lizard has taken leave of this place. Little blue beanie Liz may be tumbling in a dryer as we speak. Many eyes are on the lookout.

Chloe has been in and out of sadness today. When the swelling goes down enough we are hopeful she will begin swallowing so we don’t have to suction her every few minutes. You can imagine that as a frustration for her.

Another little setback is that her vision is double now. Possibly a result of the trama of getting her tube out. She did watch a DVD tonight though.

That’s about it for tonight. We are so happy the Ventilator is gone… not so happy they had to put a trach in… very happy she doesn’t have a tumor anymore… and hopeful for the future.

This has been a long day but it’s had its bright spots. Chloe is alive, getting better, calmer, and a fighter. We are in for a long rehab with her coordination and strength and all the things associated with her vocal cords. We hate to see her have to go through this but we are so happy we were given this second chance.

Blessings,
Ron

Wednesday, 12/9/09

Dana and I are sitting in PICU with Chloe now. She is heavily sedated due to the fact that they did give her a trach today. When they scoped her to take a look we have some movement on the right side cords. The left side, the tumor side, is still asleep. The trach will make it much easier on Chloe in the meantime.

The doctor told us that she is able to breath on her own, however, for awhile the ventilator will remain hooked up. She knocked if off her trach a few minutes ago and I was able to easily replace it to the opening. I’ve done this before…

What we know is that Chloe is healing at, what I consider, a pretty fast pace. She went from not being able to move her right side, open her eyes, breath on her own, or keep her eyes steady, to, in a week, being quite strong on her right side, able to open her eyes and focus, and breath on her own. Now we have some movement in her vocal cords which is what we need next. That will allow her to speak, sing, swallow and eat. I’m making the prediction of one week or less!! Believe that with me okay?

Dr. Peter Scott came to get Chloe about 10:15 and we were back to the room by 11:30. Dr. Cullyer did the trach and was happy with the results. He will also be the one to monitor the vocal cords and can do so without bringing her back to the OR. While she was there “Swan” placed a pic line, which means IV lines get pulled. This will make blood draws and infusions of any kind much easier on Chloe.

Sandy and Dana are holding up better than most would under these conditions. They are living in the PICU and the “Quiet Room” with the other parents. That means little sleep and no idea of the time of day, what day it is or if they’ve eaten or not. There is a shower down the hall. Sort of like dorm living only worse…. No Parties!

I take that back, we just had a pizza party thanks to the Candle Lighters, an organization that helps kids who are in this kind of trouble. There are so many of these great groups around. It’s nice to know there are so manhy people to help support them as well. We hope to be in a position to contribute in the future.

We are having some picture problems, but as soon as I can figure it out I’ll have them posted for you.

Blessings,
Ron