Tuesday, August 5, 2014

Week #1

On Friday Brayden has his port placed and he did great as usual! The nurse got his IV and labs all in one poke, they started on time, and we were home by lunch. Brayden was pretty tired, had a pretty bad cough, and slept most of the day but I didn't think too much about it. Shortly before dinner he crawled up into my lap and he felt very warm so I checked his temp and he definitely had a fever. I spoke with the oncology oncall person and we were instructed us to go directly to the ER.
We spent many hours in the ER for which they accessed his fresh port to draw blood cultures (and he cried a LOT), did a chest xray, and gave him an IV antibiotic. Child life was kind enough to get the movie "cars" for Brayden to watch to help pass the time. When the doctor came in to look in his ears he pushed her hand away and said "I'm watching cars". It was so cute and really showed his little two year old personality. We did eventually make it home and I finally put Brayden to bed around 2AM. Friday might have set a new record for most time spent at CMH in one outpatient day. Saturday morning he seemed a little better so I went to work (late) but I am still counting it :) He spent most of the day sleeping off and on with a low grade fever with mawmaw and he finally came to life around dinner so he got treated to the Olive Garden because he LOVES the salad and breadsticks so much he is usually full before the pasta comes.
Today marks the beginning of our year long relationship with "Vinblastine". Brayden did so great for vitals/height/weight he got to pick some crayons out of the prize box. He was talking about a bus on the way to his room so they found him a bus to play with. While no one ever wants to have to be in this clinic, they do their very best to make it enjoyable for these kiddos. I am happy to say that we were in and out of the clinic this morning in 90 minutes and while Brayden did cry for port access it wasn't nearly as bad as in the ER. He has come so far developmentally since his previous chemo that he knows more about what to expect. As our nurse went to gather the supplies for access I said to Brayden "Let's take our shirt off!" 7 months ago he would have just lifted his arms up but today he immediately started crying and tried to run away. When the nurse came back and started cleaning his port site she sang him a song and he started calming down. He did well until the actual poke, so next week we will put some numbing cream on before we leave the house. I am hoping that with each week access will get easier for him. I think my husband said it best as we pulled out of the Children's Mercy parking garage this morning when he said "One week down, fifty one more to go". I didn't know whether to laugh or cry at that moment so I did neither. Two weeks ago we were told his tumor was progressing and at that moment it felt like we were getting his initial diagnosis all over again. I was immediately as scared as I was when they found the tumor, and while I am still scared, it is lessening every day. Brayden is loving life as usual and smiling through most everything so we are just doing all things fun.
My dad and husband got started putting his swing set together on Sunday and Bret is finishing it today. Brayden of course wanted to help......
Helping build my slide
are all these tight daddy?
I think it will even be done in time for him to play on it for a bit tonight after it cools off some! Thanks to daddy for working all afternoon in the 90+ degree heat to make it happen!

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