ChloeWatts.com

Tuesday, Dec 22, 2009 Very Early

We’re all a little bummed out here today. It was expected we would be out of PICU Monday morning, however, with the amount of gunk Chloe was producing in her lungs and the amount of times we needed to get a cough assist on her during the morning hours, it was decided to keep her here until she did well for 24 hours. Nobody wants us bouncing back and forth between the floor and PICU. So, for now, we are staying put.

When we do move from the unit we will be going to the floor and be under the care and watchful eyes of the rehab doctors. That means Dr. Noorwood, Sarah and Chris will have to come by as visitors instead of as official oncology rounds. Whatever works best is what we’ll take. The fearsome threesome did drop by today and Chloe really perked up. They make a great team and have worked wonders on Chloe’s behalf.

During rounds it was determined that Chloe was back to only one antibiotic. One had run its course and now a second was added to fight the new cultured bacterial infection she has. She still doesn’t have a fever so we believe this will clear things up soon. Her lungs were working very hard today trying to clear the mucus so she is back on the ventilator to give her a rest. Again, they don’t consider this a setback, just a rest. She works very hard at everything they ask her to do and we want to make sure all systems are working the way they should when she dives into the rehab program. It’s pretty intense.

Although I missed him by a few minutes today, Dr. Dorsen made an appearance. Dana and the nurse had Chloe sitting on the edge of the bed when he arrived. He told Chloe to raise both arms over her head. She did so right on command and Dr. M.D. almost did a break dance in appreciation. He really has taken a liking to our little star child. No wonder.

The day had its ups and downs respiration wise. After she undergoes some good movement she brings up more gunk. This tends to make her breathing crash. Normal is 100 and when it goes into the 80s it’s cause for action. She was there a few times today. The good part is that she bounces her numbers back up quickly. Highest 90s to 100 is usual for her. Right now she is at 100 with her respiration at 14. When it gets out of the teens that is also something to watch or act on. During her episodes she has been up pretty high, 40 and above. That really wears her down quickly and you can see the concern on her face.

She is getting stronger by the day. She can now help in the rolling process and she can, but is afraid to, hold her head up pretty well. She will lift it off the pillow to reposition her bedding. Her right arm, hand and fingers have a lot more movement and the control is coming back a little at a time. The right leg is doing the same. She is still quite weak on that side but she’s working it. And she says her sight is getting better. I haven’t noticed the eye shaking to any extent in a couple days. She still says she doesn’t think she could start reading again yet. When she does I think that will boost her spirits a lot. She loves to read.

Dana left for the quiet room about 11 pm tonight. It’s always a hard parting when she leaves before Chloe is asleep. The bond these two have is beautiful to watch. I know I’m one of the top potatoes but I also know there is a huge gap between number 1 and number 2 potato.

Most of the day we had Chloe either smiling or laughing. It’s strange to see her laugh and not hear anything. But you can feel the laugh. It’s complete except for sound.

The thought of being here for Christmas has us all a bit down. Neither Dana nor I have been out to even start our shopping. We are hoping that with Sandy back in town we might be able to sneak out for a morning trip to the …. Ah… mall. It’s funny that a place neither of us likes sounds so appealing at this point. Rev. Barb has offered to sit anytime so she is an option I might just ask for.

So many people are saying so many nice things about Chloe and sending their thoughts and prayers her way that it’s warming up the atmosphere. I just hope Al Gore isn’t paying attention… This is a tough road for many of us but I can’t imagine how tough it is for an active 10 year old around Christmas.

Blessings,
Ron