A Literal Shit Show

I thought I would have more "down" time the past two days than we actually did. Greyson's surgery went great and shortly after the blog post we got notification that he was all done and in the recovery room. A few minutes after they notified us they brought him in they allowed Adam and I to come see him. Poor buddy looked so small in his bed. He was still pretty sleepy and his heart rate was really high. Pre-surgery his heart rate was in the 120's. When we got back there it was in the high 160's and sometimes low 170's. They tried to give him some pain meds back there to see if it would go back to normal. We waited about 45 minutes in the recovery room while they got our hospital room ready for us. His heart rate was still high so they ended up giving him some morphine and within a few minutes his heart rate mellowed out. He slept most of surgery day and we didn't want to push him much so we just let him sleep.

Yesterday 7/2 - he was still pretty tired and sore. With his fundoplication we noticed he's been having a harder time burping. The fundoplication (sometimes called a Nissen) takes the top part of your stomach and wraps around the bottom of your esophagus. Part of tay-sachs is that his muscles will continue to weaken over time and eventually will have a hard time with swallowing and his esophagus won't be as strong to keep food down. So the g-tube will help feed him and allow us to give him his medications directly in to his tummy- which lowers the risk of him aspirating on it. The Nissen will help tighten that esophagus to keep food and liquid down- so it doesn't come back up. Grey didn't eat the day of surgery at all. We gave him some tube feedings over night (about 5oz and tried to do 4oz a few hours later but he was uncomfortable so we stopped it). I gave him a bottle by mouth in the morning of 4oz but after that his poor tummy was SO bloated. It was hard and you could tell he was uncomfortable. We tried to give him a suppository to help him poop. It did a little but you could tell he was still so uncomfortable. He was really whiney. We did bicycle movement with his legs and let out some farts but poor kid was still bloated. He napped a lot and we just let him be. Adam and I finally got to snuggle him though- and that was really nice. We vented his g-tube a lot yesterday and tried to let the air out. Another thing we had to learn yesterday. All these things you never think about until it's your reality

Today so far his stomach seems to be doing better. He is a little less whiney and it doesn't feel as hard as it did yesterday. This morning he took a bottle with Adam- about 5.5oz. Afterwards they snuggled in the recliner chair watching soccer together :) He seems a little more alert today but still a little sore. It sounds like once he can tolerate as much food as he does at home - then we can go home. The way he's going today I don't know if it will be today but maybe tomorrow. It's also nice having some nurses around to help us and give us tips to make things easier when we do go home. He just had a little sponge bath and tried to have a bottle with Dada again. He only had about a half ounce before falling asleep. We decided to try feeding him with the g-tube since he's tired. Try to let his tummy get some food in there. He still needs a poop so we are hoping he will work that out today. He seems like he's slowly getting back to our Greyson today more than he was yesterday. He's still more tired than normal but to be fair- I would be too after surgery like this. And on such a tiny body.

Last night Adam and I didn't really know what we wanted for dinner so we snuck out quickly to the cafeteria to see if anything sounded good. Nothing jumped out so we went back to the room and had the "sack lunches" the hospital provides to the parents. It's a half wrap (turkey or italian) with some apple slices, and a cookie. We shared our earbuds and watched Ink Master again together. I don't know how I would do this without Adam here. Last night he made a joke and just cracked himself up laughing (see the picture below). I'm honestly not even sure what the joke was about.. something about the Price is Right.. but he thought he was hilarious :) I didn't get it but man, I love that he can still laugh (and try to make me laugh) every day.

Update: 445pm

Well Greyson had a little rough of an afternoon. He had not pooped a real poop since before surgery. His stomach is sore and I'm sure pushing doesn't help at all. We gave him another suppository to try and help. Well about an hour after- he was crying in pain trying to poop. His heart rate shot up again and we surrounded him to try and do whatever we could to calm him down. He finally pushed out some good poops and toots and he's currently napping. It was so funny. Our nurse was on lunch and came back to see his monitor with such a high heart rate she popped in our room. We had his diaper open and his pad up. "Welcome to the literal shit show!"

We both got showers and Grey got a bath. Nice clean family:) We were told we may be able to go home tomorrow but it depends on how Grey handles his feeds tonight and tomorrow. As much as I can't wait to get home and get him in his own comfy bed, I don't want to leave until we feel comfortable with his pain and feedings. He's been through enough- and it's a 2.5 hour drive home.

Thank you everyone for the kind words and messages too.

xoxo,

Kim