Day 68 -70 at St Jude

Day 68-70

Mike and Chris arrived about 12:30am. Jesse was barely staying awake, but she really wanted to see them. It is so good to all be together in the same space.

The girls went to bed, and Mike and I sat up talking for awhile. The Grizzlies house is nice in that it has 2 separate rooms, a sitting room and bedroom. Mike told me that he had to use the bathroom on the plane for the first time ever. He couldn’t find the flush button, and instead he pushed the help button.

I asked him if anyone knocked on the door. He said he made it out before the attendant got to him. But she did tell him that he was lucky to have come out before the plane started moving, or he’d have been locked in during take-off.

I slept till 8, and Chris was awake by 8:30. I took her into the hotel to get breakfast. Jesse slept the longest, as usual. But we noticed her breathing was a little odd. I’ve noticed that she often stops breathing for about 20 to 30 seconds while she is sleeping. And we’ve had her on the pulse ox machine in the hospital when she has done this. Her oxygen always stays between 96 and 100.

Today she was taking 2 huge breaths, a little breath, and then she’s stop breathing for 20 to 25 seconds. I actually took video of it to show her doctor.

Mike went over to patient services to rearrange his and Chris’ flights. They will leave really early Tuesday morning.He also grabbed the mail. Thank you Cindy, Mike, and Biscuit for the gift card to McDonald’s, foam puzzles, coloring books, food, Banana grams, and Uno cards. Jesse was really excited to have McDonald’s for lunch.

After Mike’s return, I took the opportunity to go for a run outside. I didn’t do really well because I forgot my hat and my ears got really cold and painful. But it felt great to run the 1.47 miles, which was a loop around St Jude with a few detours through parking lots.

Back at Grizzlies, I started laundry while Mike and Jesse went to McDonald’s for Jesse and Chris.

Day 69

Yesterday we went to the zoo. This time we started with cat country because Jesse was done by the time we arrived there last time. And we made it to the seals this time. I think the next time I need to pack snacks she might eat in my bag.

The trouble is Jesse takes a bit to feel like eating in the morning. She has refused breakfast the last two mornings.

Afterwards, we wondered out to Germantown to the Chili’s out there. It was good, but we have decided that both Chili’s in Memphis we have tried do not beat the service we get at our Chili’s in Williamsburg.

On the way home we stopped at Old Navy to take advantage of their jeans deal and look for a hat for Jesse.

The girls spent the evening playing and laughing. They did do some fighting, but I have noticed that with Chris around Jesse is more spunky. It really is a total shame we can’t do this treatment at home.

Day 70

This morning I gave Jesse her meropenem. Then we decided to run to Target and Kroger in preparation for Round 4 starting. Shopping is not my fort-ate… and when combined with Mike and Chris arguing over what he thinks fashion is and what she thinks it is… well there isn’t medicine strong enough to help me.

We arrived at Target at a good time because as we were leaving the crowds seemed to be pouring in. And it looked like most were after the sale on sodas.

At Kroger, we grabbed stuff to make guacamole. Mike is concerned that it’s not going to be right. Let’s see… I have not been in my kitchen or my house in 70 days. I have learned how to adapt sort of. I’d much rather be with my kitchen.

I will have to say that I am trying to figure out some way we can stay in isolation. I like being on the St Jude campus. I like the set up of the isolation rooms. The only thing I don’t really like is they only have 2 washing machines on the 2nd floor. One is broken, and someone decided to start laundry at 8pm last night combined with a fire under their butt. In other words, they couldn’t wait 5 minutes for me to return to move my laundry over to the next machine. Hate that.

Jesse is starting to obsess about Tuesday when Mike and Chris head back. I am a little concerned about Chris flying back. US Airways called this afternoon about Chris’ flight being delayed. Mike says the travel lady gave him all the information for him and Chris to fly back Tuesday morning. Guess we’ll find out tomorrow.