We got packed up and headed down to CHP to start round #1 of his consolidation treatments Sunday night. We were unable to get a room at the Ronald McDonald house so we were forced to stay about 2 miles away at the 'Family House' at an increased rate. It was about 8:00PM and we were heading out to use our Olive Garden gift certificates, when Everett ran out the door to push the elevator buttons. Unfortunately, on the other wall was an open fire alarm pull right at his height, just begging to be pulled. He was about 2 steps in front of me and I even started the 'Noooo' but it was too late. So we walked down the steps and told everyone who the guilty party was. Everett enjoyed the lights and sirens, and later the firetruck but wasn't happy when he thought he had done something wrong.
We had to get up the next morning at 4:30 to be in the clinic at 5:30. Everett did well on very limited sleep and was swept away around 7:30 and seemed to be ok with everything that was going on. He successfully had his Broviac line put in his chest and had his bone marrow aspirate performed. I think he has a very high pain tolerance, because unless he touched his insertion point or kneeled on his tubes, he didn't complain of any pain. He was dead tired and we finally got him to sleep around 3:00PM. Everett's line looks like the one below, only his goes down to his thighs.
Broviac Line
Having two wires, one blue, one red, hanging out the bottom of his shirt, creates an issue for a curious young boy, including attempts to chew on them. (Mom did a great job today replacing his dressings and installed a 'bone' to shorten the lines and keep him from playing with them).
During his nap, the doctor came in and told us that his ANC levels (610) were too low to start his Arsenic treatment this week. So we packed up and headed back home very disappointed.
It was about 7:00 so we decided to stop and have some dinner. We had taken 2 cars and when Val pulled into the restaurant, Everett threw up about 20 pretzels worth on himself and his car seat. We later came to the agreement that his anesthesia and morphine might have upset his stomach. So we got him cleaned up, ate dinner, and drove the hour and a half home. The anxiety of the situation made for an expedited and uneasy dinner.
We were both hoping to make the blood drive last night, but we didn't get home to close to 9:00. We heard there was a great turnout and the boy's daycare even held a fundraiser and had an envelope to give us. This will be very helpful as we will be checked into the Ronald McDonald House for 10 out of the next 12-13 weeks.
So, we're all back at home, Val is watching the boys today and Dad is working. We changed his dressing, which is a process and sometimes painful for Everett but he hung in there like a champ.
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