Today is Monday. Every Monday we head to the hospital so that Zack can have labs drawn and work on some other things. We leave our house at 5:45 which is brutal for Zack and for me. At our last visit, Zack’s sodium levels were doing so well that we were allowed to miss a week. We still had to drive in last week for another appointment, but we got a week off of labs.
This week both Zack’s doctor and main nurse were out which meant our routine was off. We usually arrive and take his urine sample to the lab in a STAT bag so that by the time he finishes his first appointment those results are back. Today the lab said they could not find his urine. Interesting. Zack produced another sample and we headed down to the lab to see what had happened to the first sample. Because Zack’s regular nurse was out, the orders for his labs were not in the computer. The technician who received it could not find the orders, so he placed the sample in the refrigerator. That would not have been bad but, unfortunately, he forgot to tell the other people in the lab it was there.
Two and a half hours later, the results were in and showed his urine sodium was low again. The actual number was 11. Below 10 is undetectable and what we are trying to avoid. That meant Zack got to have another blood draw. Not many of the nurses in the clinic do PICC-line blood draws, but one of our favorite nurses does. That made Zack (and me) pretty happy. Zack also sweet talked her into changing his PICC dressing since he had been waiting so long and did not want to waste his precious after school time getting it done at home with his home nurse.
Because his level was down we “get” to go back again next week. It is not too terrible, though. We enjoy seeing all of our friends at the hospital. Zack likes giving all of his nurses hugs and I like talking to them and learning all about their lives.
After all of the delays today, Zack only made it to the last hour of school. He was not too disappointed because that hour included music class and PE. Zack loves PE and is so happy that he is allowed to participate once again.
Zack has been dreaming of the day when we would finally allow him to participate in “real” sports. Last summer he had tennis lessons but missed a LOT because he had surgery unexpectedly. Zack has had swim lessons but had to stop due to prolapsing and surgery. Do you see a theme?
Last week his good friend asked him if he would like to go to Buddy Day at his karate school. We knew there would not be any physical contact involved, so we figured his PICC-line and stoma would be safe. Since we knew it would be safer than running around the neighborhood like a maniac, Jim and I decided to let him try it out.
Zack was grinning ear-to-ear the entire forty minutes of class. He LOVED it! Who cares that he had trouble staying focused and stood on his head? He never had the chance to play T-ball or soccer and everyone knows that kids spend plenty of time doing that or picking flowers or looking at the clouds during those sports. Who cares that he had trouble moving his body the correct way? He was so excited to be learning karate. While I do not have the words to capture his enthusiasm, I do have pictures – taken through a glass window on my blurry phone.
A glimpse of Zack’s smile!
I think they were working on their reflexes.
While we do not know if we will actually sign Zack up for karate, tonight was awesome. Zack thinks having a uniform would be cool. (He was disappointed when he learned he did not need one for tennis.) We still need to run it by his doctor and talk to the school to see how comfortable they would be having a child with a PICC-line, an ostomy, and a g-tube in class or if it would even be possible. We know there is no contact or sparring at the lower belts but even so…we need to give it more thought.
Even if Zack does not join karate YET, watching him be a participate in a sport was fun. Seeing him participate in a normal childhood activity was exciting. His smile was contagious and he was so happy. I am looking forward to more days like this!