Sunday, April 15, 2012

Opening day 2012

Friday we spent all afternoon and evening at the hospital. It initially ended up being a bit more involved than planned, just as the nurse was beginning to draw cultures we all realized he had clotted off the one lumen of his central line, while running two continuous infusions, none the less. A first for Wyatt...we typically have the opposite problem. He's a bleeder, not a clotter. After a bit of scrambling and clearing the clot with TPA, we were able to draw the cultures. Then we settled in, watching two units of blood drip slowly into our boy.

Saturday morning we coaxed Wyatt out of his bed bright and early. No easy task! Last year Wyatt had a great time playing baseball and being a part of the Padres team. This year, Wyatt's health and abilities limit him from playing ball, but he's been invited to hang out with a team and was asked to lead all the players in saying the Little League pledge on opening day.

While different circumstances than last years opening day, it proved to be another special moment for our family. Months ago we were sitting in the PICU and I was dreaming of watching my son play baseball again. While we may never watch him run the bases or catch a fly ball, watching as he cheers on the players is heartwarming in and of itself. I'm so thankful to be able to stand at another opening day ceremony, cheering on the children, including my son. So proud of him!
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Wednesday, April 11, 2012

Spring break.

Happy Easter! 

 Our spring break included cheap, easy projects, offering hours of fun...
"Cloud Dough."


 And snuggling with a long awaited new friend. 

The weeks have been moving along quickly, our days packed full and not allowing time to gather my thoughts enough to blog. Wyatt's been struggling with pain in various areas recently, some intense and very uncomfortable. We visited with the urologist and he talked of surgical options yet again. We now have decisions to make of what the next step should be. The Supra pubic catheter has given him more comfort than the foley through his urethra, however we've recently run into some issues with its positioning which is causing irritation and a very irritable spasming bladder. That in addition to his increasing belly pain, makes for a sweet boy who is not feeling too well. The last couple weeks he's asked to stay in his bed for the majority of the day and has declined fun outings that he's looked forward to because he's "hurting too much." He's currently in need of a blood transfusion and has been bleeding consistently from his nose and through his g-tube drain throughout the weekend, which isn't helping his energy levels. His weight continues to climb as his body holds onto more fluid. He did enjoy the brief distractions that the Easter holiday offered, partaking in an egg hunt through the yard with the girls while visiting with friends and family. We've also been celebrating the arrival of our close friends' new baby boy this last week. The kids have patiently waited, watching our friend's belly grow in anticipation for 9 long months and are now quite fascinated with this new little person that has been welcomed. But Wyatt particularly was looking forward to the new little boy's arrival, he's been asking to hold him, bonding and snuggling with each chance. So, so very sweet.

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