ChloeWatts.com

Thursday, Dec 17th, 2009

Today was another big day with Dr. Dorsen smiling and very excited. Although there are smiles there are also deep concerns still. We need the lungs to cooperate, we need the vocal cords to respond so she can swallow, eat, talk and function normally without risk of aspiration or pneumonia. These are Big. So we are concentrating on one thing at a time with not timeline in the picture.

I suggested today that we were probably trying to spell the word BELIEVE in this trip down this ugly road. “B” was making it to PICU, breathing. “E” was envisioning and then finding out that the tumor was gone. “L” was life outside PICU… we made it to the next room. “I” was sitting up in bed for the first time, with her legs hanging over the side… with the help of three people. “E” will be everything involving the lungs will be corrected. “V” will be having the vocal cords back and hearing Chloe spout her first words in way too long. “E” will be seeing Chloe Eat anything she wants… She’s thinking Kentucky Fried Chicken. And the ! and the end of the word will be seeing Chloe in a long and Very Productive Life.

We did get to move out of PICU today. The trach change on Wednesday went well and she was able to stay off the ventilator all day yesterday. I spent the late shift with her and she did well overnight with only needing three cough assists to get congestion out of her lungs.

This brings up a good point by the doctors. We need to make sure that no-one with a cold, the sniffles or anyone who even thinks they are sick is around Chloe. She has enough problems without getting the simple cold. This could be disastrous at this point. The unit we are in right now has many other very sick or immune deficient kids there. A person with an illness could potentially risk the lives of any of them.

That being said, the hospital, due to the H1N1, has many restrictions on visitors. We haven’t had the entire family in to see her yet so those people will be getting first billing. After that, per the doctor’s suggestions, we will see about limited visits by the healthiest of you. These visits should be short and set up in advance via email or a call please. There have been signs limiting visits to family but we are uncertain if that’s still in effect. We’ll find out. Chloe is starting an intensive regiment of PT/OT and will be worked pretty hard. This means the medical team will wear her out and we well wishers will just have to understand that she comes first. Chloe is being patient so I hope the rest of us can be the same.

We won’t be out of the hospital for Christmas as far as we can tell. There is just too much in her minute-by-minute care that would overwhelm us if we were even given the opportunity to try it at home. So that means we will be having a family Christmas in the room. This is going to be a challenge as these rooms are VERY SMALL and barely have enough room for a few extra clothes for Dana and Chloe, much less Christmas presents. So we’ll have to figure out what to do about that.

Rev. Barb was able to stay with Chloe this afternoon in order to let the rest of us out of there to attend Colin’s Christmas Choir Concert. Seven of us were able to attend and it was well worth it. The director at Wilson has done a wonderful job with these vocalists and makes it fun in the process. Colin is in the Wilson Men’s’ Choir and they did some really fun tunes and did them well. All the groups were excellent.

Time for sleep. Two hours doesn’t cut it but it’s worth it being with Chloe that much more. I’m proud to be in the roll of Step-Dad for such a wonderful girl. ASD is the official title but she recognizes me as SD and it’s just a formality anyway.

Be Well,
Ron