Landon has had a pretty good month of appointments around home. His antibody level dropped to 358 and while in the hospital they said anything under 500 he should have an infusion. Marie reached out to the hospital and the oncology team agreed he needed a infusion. GI and Infectious Disease also agreed but they wouldn’t move forward with scheduling. The oncology nurse said the order was there so Marie scheduled it.
We had a virtual GI appointment, and they were surprised we had the infusion scheduled. They wanted the infectious disease doctor to place the order rather than oncology, yet it took two weeks for them to call. They called me one morning and tried to tell me he might just run low, and it could be a moving target and he has been staying healthy. I reminded them Landon hasn’t gone anywhere and has been living in quarantine so that’s why he hasn’t gotten sick. I told them we were hoping to have a birthday party, so we want his antibody level to be higher. They agreed to keep our appointment for April 6th.
They reached out to Marie, and we got the infusion appointment moved to the 5th. We went to the Cities Tuesday night because there was a chance of ice and snow. We reserved a king room, but they tried to give us two queen beds. That doesn’t work for our little mover, so we got upgraded to a king suite. I noticed we were right across from the fire exit stairs when we got to our room, and low and behold we were watching a movie and the alarm went off. We got a blanket for Landon, and I went out the door; I saw an older couple who were both soaked, so I went down and talked to them.
Someone had called their room and asked what color the sprinkler tube was. They asked if it was blue or green. She said it was red and the caller instructed her to take a pen and break it because there was a fire nearby. I confirmed there was no fire, got their door shut, and dammed the door up with all our towels. I explained to her how sprinklers work and waited for firemen to come. They arrived and got the water shut off. When they opened the door there was at least 6 inches of water on the floor! We got moved to a different floor because they knocked the toilet off to create a floor drain and it started to smell. They were also working through the night to clean up the water.
Landon’s infusion went well on Wednesday and the roads were good the whole way home except for the last 100 yards in front of Villard. He had some difficulty walking and balance issues today. Marie tried to contact the team in the Cities but had no luck. She reached out to the home nurse, and it sounds like there is a weird virus going around that doctors have blamed for similar issues seen in another toddler. The oncology nurse called Marie back and said Landon could possibly have a headache. She suggested giving him Tylenol for a couple days and keeping a close eye on him; she knows we do a good job at that. The nurse was kinda surprised when Marie rattled off his vitals. If things stop getting better or take a turn, we’ll bring him in. Tonight, he seems back to his normal self so we are hoping that it was just a weird fluke.
