EPI-743 - Week 13, Day 2 at Stanford

The car seat arrived at midnight! I did NOT hike down to the lobby and pick it up, rather, I mumbled something into the phone and it magically arrived around 9:15 a.m.!

We left for the hospital about 9:45 a.m. and the day went smoothly. First we started with the ECHO cardiogram on his heart. That's basically him lying still on top of me for about 30 minutes while the hook up some electrodes and then use and ultrasound to look around. He did really good. Barely moved an inch.

Then we took a little break and did the EKG. That was about 12 electrodes stuck all over his chest. They only needed to get a few seconds of him lying still for that one. Done quickly there too.

We wasted the next hour or so playing near this huge train. I didn't get a picture of it, but I googled and found one!



We checked in at the basement in the Ford Surgery Center for the brain scan. You can see all the details in a previous post here. He did a good job and it was nice that we had all the same nurses and doctors we had last time! She even remembered wrapping him up in a blanket like a burrito. Clearly Will makes and impression.

Everything went just fine and a few hours later we met Will in recovery. They did the skin biopsy in recovery as well. He was still out cold. It was interesting... It was like a small round tube that they twisted into his skin and then kind of like a zit when it pops, out comes the white head. They snipped the piece of skin off and it was a perfect little piece of skin. Put it in a tube and off to the lab. It was probably no bigger than half of a pencil eraser. He never woke up during the whole thing.

They will use the skin to see how his mitochondria react to different medicines and treatments. Just for research purposes. So that will be interesting.

We waited around and he finally came to, we needed to reach two hurdles to go home 1- drink juice and 2 - go pee in the urine capture bag they had applied during the brain scan.

We conquered juice pretty quickly. The urine bag, not so much... the dang thing was not applied properly. His skin was pinched up in it and his manly parts were mashed up and pinched too. It was obviously NOT comfortable and really irritating him. After rubbing a Popsicle on his belly and feet with no pee pee, we decided to remove the first urine bag, apply a new one and head home with a cup and bring it back tomorrow.

During the bag removal, we ended up letting him air out some of the skin irritation while I kept the cup handy. He decided to do his business and filled that cup up quickly. We tossed a towel over him for the remainder and off we went. Unhooked all the tubes and wires, put on his clothes and left. He was VERY happy to be leaving.

Made it back to the hotel, meanwhile, my in-laws picked up dinner and we had a picnic in our room. Will ate pretty good meal and Grandpa even surprised him with a Reeses. Delicious!

He was in a REALLY great mood all afternoon and full of giggles. Pretty low key night. He's laying in our bed cuddling with daddy and watching Barney while I blog. Not a bad end to the day.

We found out that all we have to do tomorrow is the dr. appt. at 9 a.m. then we are free to go!

I met a mom today whose daughter was there being treated for leukemia. She was getting a port installed, but it sounded like she was going to be ok.

It's really easy right now to think that magically Will is going to beat the odds and be ok. He's so healthy and just keeps doing great. Seeing him laying in the recovery bed or while the anesthesia is being done just is a bit of a gut punch. It just doesn't make sense. I can't make sense out of it. So, I guess I'll just keep loving little buddy and try to leave that box on the shelf till it falls off and hits me on the head.


The pictures are taking a REALLY long time to load at the hotel, so I will post more when I get home.

Will before getting any sedation meds. He earned two stickers in the heart lab!