June 14

June 14th is World Blood Donor Day. This is a reminder to please donate if you are able, and find out about platelet donation too! COVID-19 has contributed to a shortage, and we are having trouble getting Connor platelets in his blood type! He's had three transfusions in two days, and he's still in severe neutropenia. (Low white blood cells, and high risk of infection).

When I got there this morning he was hungry and trying to eat. Unfortunately his swollen mouth and throat still make swallowing incredibly difficult. It is increasing his frustration greatly. He managed two bites of some cereal, a sip or two of smoothie, and some water. 

It all came up along with what seemed like a metric ton of mucus and blood (about 300ml, but still...).

He did sleep fairly quietly after that, and seemed to breathe better at least for an hour or so. 

He blew out another IV last night so they are looking to put the midline back in, but they hadn't done it when I left. He has an IV in his left forearm by the elbow and they keep straping a board on his arm to keep it straight. Otherwise he sets off the pump alarms. He's run out of arms for the blood pressure cuff, so it's on his leg, along with those horrible leg cuffs that keep your blood circulating to prevent clots. He's at 9 pumps and 3 IV's, so they will likely have to poke him yet again.

They did another CT today, chest, sinuses and head. Still trying to find a source of infection because he keeps getting a fever. Nothing conclusive, seeing some continued atelectasis on the left lung, and he has signs of possible esophagitis. (Thickening of the esophagus), which isn't a surprise with how hard it is to talk and swallow.

He's been on TPN (IV nutrition) which is now spiking his blood glucose. They are now testing his blood every 3 hours (another poke!), and are likely adding back insulin.

They are continuing the GCFS to help him generate his WBC, so far hasn't helped much.

His kidneys seem better, and the liver continues to improve, but looking at him he doesn't look better, he doesn't feel better, and we are all getting very frustrated.

Today is his Jr. Prom. He loves to dress up and wear a suit, so I'm sad yet another milestone has been taken from him. Last week, he'd hoped to make an appearance for a picture or two, but that just isn't possible.

However, Kaylea is dating a young man from Connor's class, and she and Brendan met some friends in the park to take pictures!

These are two of my favourites. (Kaylea, true to form, had to be reminded that she shouldn't climb trees in a dress and heels! Note the use the of the word "shouldn't", saying she "can't" is way too much of a challenge!)