Fri. 9/12 - update

Our day was very similar to the previous ones. We went to the hospital first thing this morning. Caed's labs were better again today. He will get a break (from labs) the next 2 days. Then, we'll start back up Mon. morning.

Caed had to have his dreaded dressing change today. A home health nurse came to the hotel to do it. She was very sweet to him, but I got a little emotional during it. Not sure why exactly. I guess part of it was b/c everything seems to be different here. The things we have been used to doing (medically) are done differently. May not seem like a big deal, but for Caed.....his dressing changes are always pretty traumatic. Since the middle of May he has developed trust for his HH nurse Laura (in Lubbock). There is a large amount of security in just "familiarity." This nurse today was nice, but just did it differently. There have also been some other changes with his central line. In Lubbock they use claves. Here, they like to use the "interlock system." Anyway, that basically means I have had to re-learn how to flush and hook his line up. Again, not a big deal.....but ALL these changes have been a little overwhelming to me. Just as I was getting confident with being his nurse, it changes. Please pray for me in this area. I know it will get easier the more I do it.

I have also been getting lots of calls everyday. I am getting overwhelmed with them too. So many different people and things to remember and do. (home health nurses, IRP nurses, social worker from hospital, insurance people, med delivery company........)

We did get word finally today that we can stay in the Leid Transplant Center (suites) for the duration of our stay. (this is located in the hospital) Haven't seen them, but heard they were nice. ??? That will probably be finalized Sun. or Mon., so we'll move over then.

It has been raining all day today again. I guess a lot of us are getting the wet weather. Lubbock is apparently flooding, which is very unusual. And...of course all our dear friends down in Edna are preparing for Hurricane Ike. Know we are praying for you all!!!!

Since the weather has been dreary today, we decided to let the kids go to the indoor water park located in the hotel. It is really neat, and they of course were SO excited! Caed seemed a little more reserved today in the water than he was yesterday. There were lots of waterfalls, etc...that he seemed to be a little timid of. However, since he can't get too wet, it actually made it easier for us having to watch him. He really seemed to enjoy just watching the other kids.

I personally had a hard day today. I can't really explain my feelings. Everything on the outside looks as though we are a family on vacation. Sure, we are getting to do some fun things. But....we are also having to make daily trips to the hospital and our hotel room is FILLED with medical supplies. Caed has to be hooked up to an IV and G-feeds everyday. As I sat tonight watching other families at the water park, I became very sad. I know there are probably things going on in their lives too, but on the outside everything looked so normal. The other children I saw did not have tubes going into their bodies like mine. They seemed so carefree. Instead of being thankful for the "fun" that MY family was having too, I found myself feeling sad and overwhelmed. Caed has made progress. Just the fact that he is HERE, in a swimsuit, and eating real food is a major deal. I don't need to forget. I think I am also just missing Caleb! It will be a week tomorrow. And the thought of many more to come....is sometimes too much for me to think about. I would ask for prayer for this as well.

Here are a few pictures from the water park. We might try to go back again tomorrow since we have a "free day" and it will more than likely be raining again.







On the lazy river