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Wednesday 6/28/17 weekly updates

6/28/17
Wil had a clinic visit today. His port has been giving us trouble when trying to draw blood. They put in a TPA clot buster and let it sit for an hour and then it finally worked! YES! His hemoglobin numbers are really low so they ordered blood for tomorrow just in case.
He had a visit from Jake's Crew at Friends of Kids with Cancer and that will be it's own post. I was just glad he was AWAKE. Seriously he slept a good part of the past WEEK. New chemo meds are kicking his butt. He is complaining of a lot of joint pain, especially his left elbow. His mouth sores are just awful and eating is a problem. We generally coat them with meds so he can eat, he takes small bites and puts them as far back on his tongue as possible. UGH.

6/27/17
Really sleepy day and rough day at the clinic. He literally slept through everything, he was so tired he could not stay awake. He would fall asleep snoring in the middle of procedures! It's hard not to worry that something isn't wrong when he is just knocked out. But I changed his bag pretty effortlessly and felt like a rockstar!

6/26/17
To say that our first night home with the IV backpack was a disaster would be an understatement. The batteries died FIVE times and I had to run to the store in the middle of the night to get more. I am sure the crazy lady in the jammies asking about 9 volts was talked about! I had to change his bag at 1:00am...interesting to do it in the dark with my phone flashlight. He was up every 2 hours to pee anyway, even though I'm not even sure he woke up some of the time, just walked with me to the bathroom. The homecare nurse came and replaced the pump it was bad! If I never hear the emergency alarm on that dang pump again it will be too soon.

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Please follow on facebook

Sorry that I have not updated here as I can not do it from my phone. Wil was in the hospital 2 weeks in April and then on his Make a Wish trip the first week of May. Please follow Wil's story on facebook "Wil Ohler's fight with leukemia #wilswarriors" https://www.facebook.com/Wil-Ohlers-fight-with-leukemia-wilswarriors-174102950041537/
5/25/2017 So, Wil is resting at home. It was a bit of struggle balancing him as he walked from the car all the way to the upstairs bedroom, but we made it! None of us were ready for him to leave the "safety" of the hospital. There you have a whole team of nurses with all that equipment to monitor him, so it was nerve wrecking thinking of bringing him home with nothing to help keep an eye on his vitals. After nearly a week of watching machines and carefully watching his pulse, checking his oxygen, and monitoring his heart rate it was hard to fathom going cold turkey. We joked that it was like bringing home your first baby. You can't believe they're just letting you walk out with this fragile young human. Scary. As of today, he's still in a lot of pain, his port continues to bleed, he's had a bloody nose, his bones ache, his back is sore, and is bored already :) However, sleeping in a nice big soft bed has helped...those hospital beds are definitely not built

Make A Wish soccer game

It has been awhile since I updated here. It is much easier to do from Facebook if you can follow his story there. CLICK HERE Wil has been struggling with the effects of chemotheraphy. The chemo has not been kind to his stomach, gallbladder, liver, or head. The good day was his MAKE A WISH faculty soccer game. March 15, 2018 Our family is humbled by the support of Wil and the Make A Wish foundation. Thank you from the bottom of our overflowing hearts, we love being a FLYER! -Thank you to Lori Condellire, Susan Dooling, & Beth Johnston for sharing pictures! A few members of the  StepUp  of St. Louis Teen Coalition presented a check from their budget for $100 to be used for Wil's Wish fundraising at the soccer game to day! So cool to see these kids in action. Way to go  Truman Middle School  for organizing such a fun afternoon.  # wilswarriors   # stepupstl