Loving Taylor

Well....we have had quite a 24 hours. It started off yesterday with Taylor needing a dressing change....never fun. Then we found out that it would be necessary to have Taylor get another nasal swab for influenza. She had already received one negative results but it is necessary to have 2 negative swabs before Taylor can be cleared to go back to the oncology floor. The nasal swab is very painful. A very long q-tip is stuck into each nostril and pushed up very far. It is then swabbed for about 30 seconds. It is pure torture for Taylor and she has already had 4 done....so it was not fun. We got through both of those and tried to have a better afternoon.

Taylor had to have a blood transfusion last night. It started out well but about 35 minutes into it she became really restless so I went to check on her. Both of her legs and ears were very red and rashy. The transfusion was immediately turned off because she was reacting to the blood. She was given another dose of Benadryl and then the transfusion was re-started. Luckily, she did not have any reaction after that.

We woke up today to find out that her nasal swab was deemed "insufficient quantity" and needed to be re-done today. At this point, I talked with the doctors and nurses and we have decided not to do the swab again. I just can't put her through this....it is too much. So....we will stay on the 3rd floor in an isolation room for the remainder of this round. She is disappointed that she won't be able to see all of her "friends" downstairs but happy she doesn't have to be swabbed again. We had to move rooms today and we are now back in the room that we were in for all of round 4. This is a private room but they are having problems with the heat and the room is a SAUNA....it is so hot. They are trying to work on cooling it down....we are both very HOT!!!!

After all of this, we tried to enjoy the rest of our day. We enjoyed a visit from Michael and had a pizza party with Aunt Kerri and Uncle Shawn. Taylor was very irritable and feisty today.....I don't think she felt that well.

For the good news.....one of my best friends came by and has given Sean and I a new laptop!!! This will enable Sean, Savannah, Taylor and I to Skype.....we will be able to see each other via computer every night. Kim - thank you so much!!! I also wanted to thank Betty and Kimmie for trying to get this going for us. Betty tired to do this for us when Taylor was first diagnosed but our computers would not allow Skype to be downloaded.....thank you for trying!!!

I am also attaching a link to a video that Taylor and I participated in. Phoenix Children has a big Christmas fund raising dinner and they asked if I would share Taylor's story on their video. It turned our really well. Cheriese reported that there wasn't a dry eye in the audience after hearing about Taylor's story.....we hope our message helped get much needed donations and support for PCH!!!

http://www.youtube.com/watch?v=WvGtwBhQ-eo

I have also attached a picture of Taylor and one of her (favorite) RN's from the 3rd floor......she loves Amanda!!

Long day....going to take a COLD shower and try to get some sleep....this room is so HOT!!!