Day 7 Post Op

Last night (Tuesday night-Wednesday morning) was yet again sleepless. Ethan woke up every 20 minutes whining, coughing, crying about belly pain, and checking to see where I was.

Playing with his magic wand from "Open Heart Magic"

Today was extremely productive though! We removed his IJ line in his neck, a blown IV, placed a new IV, did a bandage change on his pressure ulcer, went downstairs for an upright chest x-ray, cut his pacer wires, and moved to the step down unit! We were so excited to get out of PICU! Ethan was really happy to be wheeled out of PICU, but saddened when we made the turn to the step down unit instead of the elevators to go home. :( At least we are now moving in the right direction!

Down in the basement for x-ray

When we made it to our new room we had a roommate, but then a couple hours later he was discharged! YAY! I am hoping and praying hard that we have a private room for the rest of our stay! It is so much better that way - not having to worry about the whining and crying bothering a neighbor, not worrying about the neighbor's activities and TV watching keeping us awake, etc.

Last night (Wednesday night-Thursday morning) was so much better! We were able to have the lights off, my chair/bed thing is right next to Ethan so he can see me all the time, and the nurses muted the alarms in our room and just monitored him from the nurse's station. Ethan only woke up like five quick times during the night so that is a HUGE improvement!

TMI update:
After we were settled into our room Ethan's dinner arrived. He took about two bites of food and then threw it up. He was given an enema because he just had to poop or would have continued feeling worse and worse. Thankfully the enema worked quickly and he FINALLY had a poop! He felt better right afterwards, but still is having a LOT of belly pain - I'm sure taking 4 days of laxatives multiple times a day is going to take more than one poo to work out of his system. I just pray that it will improve very quickly. This morning after brushing his teeth he threw up again. I could see three still almost intact pills. He had recently taken a Tylenol (which I saw clearly), but the other two pills were from the night before. It surprised me that it would still be in his stomach and not digested! We are going to order oral Zofran to help his nausea, and I believe continue with the gas medicine and hopefully something to continue with more poo.

He is complaining a lot of just not feeling good - I think mainly due to his stomach. Please pray that he gets some relief quickly! He also was weighed for the first time since admission and we found out that he lost 10 pounds! Something definitely needs to give so he can start eating again and gain back this weight! He has completely lost his big belly and he has major chicken legs now! We now have high calorie/high protein milkshakes and ice cream made for him to try and bulk him up a little, but he is only able to eat a couple sips/bites of them.

This morning the doctor informed me that his chest x-ray from yesterday looked mildly improved, but still has a lot of atelectasis and edema to work through. Please pray that we can open up his lung and that the Lasix will pull the remaining fluid off them.

He also really needs to work on getting up and around. He get so exhausted so quickly, and doesn't want to attempt walks. He basically wants to ride in a wheelchair to go places instead of trying on his own. He also is panicking still when he coughs. He feels the gunk in his chest/throat and panics saying he can't breathe and thinks he is choking.

Also he blew the brand new IV that was placed yesterday (his very last one). So now he is having to get poked for all his blood tests and switch to oral Lasix. Hopefully he can keep down all of his oral meds and that his belly relaxes and he starts to really feel better. We are definitely hoping and praying for a fantastic day so we can get out of here - we were hoping to be discharged tomorrow, but it really depends on how quickly he recovers. Things are not looking really promising this morning, but of course I am still holding out hope!

Sorry I didn't update last night but I was exhausted. I will definitely update tonight and let you all know how today went - hopefully with great news!

He received two packages yesterday and was so excited - so thank you so much for everyone who is sending cards and gifts! He is always so happy when mail comes around!

And of course we had some Snapchat fun while stuck in bed!