I just got home about an hour ago from the hospital. Ken is settled in with Ethan for the night. He did very well with the IV. He cried initially mostly because the nurse was holding his arm so tight, but after that he was a champ! He talked and sang the whole time.
Ethan is being scheduled for a PICC line to be put in tomorrow. They will sedate him for the procedure. This will be a better long term IV for him.
The doctor is saying we'll be staying for 10-14 days. They have increased all of his treatments. There's too many to list. They are basically treating him like he is sick by boosting everything up.
We were pleasantly surprised to learn that they have a playmat that was sanitized for him to play on the floor and toys that have been cleaned too. His only hangup is that he can't go very far on the mat with his IV attached which is very frustrating for him. He looked very tired when I left tonight so I'm hoping he sleeps well for Ken. I felt bad leaving to go sleep in my own bed, but I'll be there all day everyday for the next two weeks.
Day 2
They still haven't scheduled his PICC line so we can't feed him until we know what time. It's really frustrating because they knew all day yesterday that we were coming in so they should have been planning for it. He can't eat for 6 hours before the procedure. He didn't eat well last night at dinner so I know he's really hungry this morning.
Ethan was sedated for his PICC line (long term IV that is placed through the inside of his arm and into his chest to a larger vessel). He was sedated for 3 hours and it took a little over an hour for him to wake up. He was very hungry when he woke up and wanted water. He hadn't had anything since 7pm last night. By the time he'd woken up this morning it was within the 6 hour window where he couldn't eat or drink. We made it back to the room about 4pm and he finally ate about 530.
Ken and I are so thankful that we have family who are willing to take night shifts with Ethan so that we can go home to eat a regular dinner and sleep.
It was hard to leave tonight. Ethan was very unhappy to see us go, especially daddy. After a minute outside the door he stopped crying.
Tomorrow will be our first normal day in the hospital. I hope we can keep him occupied in the room and that he takes a nap.
Day 3
Day 3 was a success! Ethan had a very good day and it went smoothly. Ken's mom has been staying with me during the weekdays so that with two of us things can run a little more smoothly.
Even after handing in a special menu Ethan still doesn't like hospital food so he mostly eats snack foods and milk. We have added a snack to his day since he's waking up at 6am when the nurse first comes in for the day.
He is doing great with all his respiratory treatments and tolerates all of it.
Thank you to Valerie Barber Luedke for a homemade lunch today! It was so nice to eat normal home food and you spent so much time on the little details to make it healthy and a special treat. We appreciate it so much!
We were very lucky today that he took a 90 minute nap despite many disruptions. He slept through until his IV machine started bleeping so loud it made me jump, so it woke him up crying.
The music lady came by today with her mini harp and sang to him for 20 minutes. He loved it! He would have loved it more if he hadn't just woken up from his nap. Anyone who knows Ethan knows that he loves to sing and talk very loudly. He has a reputation on the floor for being heard all the way down at the nurses station, 4 rooms down the hall.
My dad is with him now and my mom is coming soon for the night. We are starting to establish a routine and are hoping to get him outside tomorrow, hopefully without the IV pole.
We will definitely be in the hospital for 14 days, possibly longer depending on his next culture which should be taken a week from Friday on Day 10. It looks like July 3rd is the first possible day we'll head home.
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