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.
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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