ChloeWatts.com

Monday, Jan 4, 2010

January 4th, 2010 Posted in Daily News Post

Dana says that she and Chloe had one of those ridiculous nights of two hours total sleep. Nothing exceptionally abnormal just an up and down night with a lot of fluid breaks. However, sleep would be good for everyone. We can’t quite figure out why we aren’t sleeping when we are at home. I think, probably, we can’t get our minds out of room 3502.

Even with the lack of sleep Chloe did very well during Speech, OT and PT therapy. A lot of the speech therapy will involve using her computer. They are trying to get the right hand involved. She has pretty good use of her left hand so she tends to not use her right hand much unless prompted to do so. We will also get text to speech set up on her computer. I just have to make a phone call to our community resident, Larry Lake, who has graciously offered to walk me through the process. It’s his specialty. It’s kind of amazing how many specialists of different fields we have in our corner. Sort of like it was planned out or something….

Chloe remains our chief specialist, as she knows exactly what she wants. She chose to stand today even though she was wiped out. She lets us know when she needs suctioning and what kind. If the tube isn’t right she lets us know. She knows when she is supposed to be on and off the vent and when the feeds are supposed to start. She nixed the electronic larynx as she knows she doesn’t want to use it and she probably also knows when she will be speaking again. She just hasn’t told us that part yet.

It’s now 12:40 PM and she’s trying to get a short nap in before her next PT/OT visit to the gym at 1 PM. Oh, she also had some time with the schoolteacher. So each day things are getting a little more intense.

Here’s something someone could deliver if you’re coming this way. We use a standard sized beach ball downstairs. However, we had it for the evening and it was a big hit. Not sure where there might be one this time of year but my guess would be the Dollar Tree. They seem to have everything out of season.

If you’d like to see something that is very interesting take a look at the map on the home page. Click on it and see how many different areas of this country and how many other countries are following Chloe. If you are one of our daily readers and you haven’t taken advantage of the comments section, please feel free to add your voice to help Chloe regain hers. We read the comments to her on a regular basis and she loves hearing your thoughts.

It’s now 5:35 PM and we have relearned the word HORRIBLE!!! Chloe needed her trach changed and also needed some scabby material cleaned away from her trach site. Silver Nitrate would be used for that and we were warned that it doesn’t feel good at all but “less than a bee sting.”

About an hour before the change was planned Chloe started getting sharp pains at the trach site. They were stabbing pains in the range of 10! Dana held her hand and was squeezed constantly. They gave Chloe Tylenol but it didn’t touch it. We repositioned her in a variety of ways and it didn’t help. Finally they came in with the Ativan which would put her in a semi out of it state. It works fast so the trach team had to be on the ready.

Dana and I had been trained on a trach baby earlier in the day and I thought they would ask us to do the change. Neither of us felt that comfortable with it so we suggested the RT do the actual procedure. It was a good thing. She asked if one of us would assist. I volunteered but Dave had just walked in so he said he’d like to help. He would just have to hold the trach in place while the ties were coming off. When the ties were removed the SN Nurse moved in for an initial cleansing of the area. It was pretty bloody and it was pretty hard on Chloe. Then the RT went to remove the trach and it didn’t want to come out. It was really painful for Chloe I’m sure. Dave backed out of the way. It finally let go and the SN Nurse did some more cleansing. It was pretty much a mess in there. Then the new trach wouldn’t go in and a smaller size was called for. When I saw there was no lubricant on the new one I spoke up. They lubed it as Chloe turned gray, her eyes rolled and she was out. Dana was a basket case at this point. The new trach went in and the airflow was reestablished. She woke up quickly after that and we calmed her down.

It was a traumatic experience for all of us in the room, the RT included. Dr. Shih showed up just in time and he has such a calming affect on a situation it was nice to have him there. Soon after that Sarah and Chris showed up. Although Chloe was mostly out of it they still created a positive atmosphere. She gave them a thumbs up for being there. All in all the teamwork was good throughout the procedure. We just didn’t like the fact that Chloe would have to go through something this bad.

Chloe was cleaned up and the trach site newly dressed. We are so glad it’s over with and plan on a different approach to trach care in the future. There Will be more dressing changes and better cleaning of the area from now on.

Dana finally left to get something to eat at 6 PM. She probably won’t eat much… although I hope she does. She is completely wiped out from this experience. I know that future trach changes will be easier on all of us but that doesn’t lessen what happened here tonight.

Dana and Sandy will be with her overnight. Dana should have a runner with Sandy here so maybe she’ll get some sleep. I’m watching Chloe and she’s dreaming. I think she must be reliving the entire episode. She hasn’t had a relaxed face on her since before the trauma.

We can just hope for a better day tomorrow. She has a full day and we will also have our Tuesday meeting to discuss what went on and what needs to go on.

Be well,
Ron