1/31 5 :40 pm

Ethan had a good night last night. He did wake up wondering where I was and the nurse assured him I was sleeping on the window seat. The heater broke on the ventilator on Friday, so every 8-10 minutes it alarms.  All day, all night. Ugh!

This morning Ethan seemed down. He finally wrote on the white board and asked if he was on life support. I felt sad that he feels he is not getting better, when you can see a visible difference in his appearance day to day. I told him how sick he was and how far he has come. I assured him he was not on life support. He then wrote “should I be?”.  

I put myself at age 17 and remembered what my worries were at age 17. Life support was never even on the radar. I again assured him that he was not on life support nor would he be put on life support because he is getting better. After some time alone with his thoughts, he wanted the TV on. This I took as a sign that he was done processing his thoughts for now.

There really is no handbook for how to handle this with such a sick and debilitated kid. What the right things to say or do. I just hope with the help of psych that I am not screwing it up too much. I just make sure every need is met and hope for the best.

Ethan’s nurse is kick ass. She gave him his medications to combat withdrawl a little bit early in anticipation of Ethan needing it. Within 5 minutes, Ethan felt he was going to vomit and started excessively yawning, both signs of withdrawl.  She was able to combat it talking him through deep breathing, emptying his stomach fluid through a syringe that was placed on the end of one of the tubes in his nose. Drawing back the stomach fluid makes the nausea go away. Then the medication kicked in quickly and away went the withdrawl symptoms.

I am excited for today. The kind of excitement where every minute feels like an hour in anticipation. Ethan has a big day ahead of him today. Everyone knows about it but him. I have to remind people to not say anything, because he doesn’t know.  There have been a few slip ups but I don’t think he has caught on. The gossip has caught on like a wild fire on a windy day.

It was so cute. When the night shift came on last night, they were coming up to me saying “so and so texted me....tomorrow’s the day...wow!”  The day shift nurses were excited they would be working on the big day.

I think it will be the boost he needs to start kicking ass again today.

Around mid day the doctor came in to let Ethan know that today was going to be the day. He was nervous. I have waited so long for this day. Normally they make parents leave. I was able to stay with the leverage that I watched Ethan go into cardiac arrest and watched his CPR. A tube coming out is nothing. No one argued. Plus I had to be the camera man for the epic youtube video we will see one day.

Ethan was nervous that the alarms were going to go off and his heart rate was going to jump and he was going to get zapped. They turned the alarms off. I was sort of pissed...why didn’t you turn those blasted things on silent the day nurse lazy graced me with her presence?

They came in and talked Ethan through the process. They we’re going to bag him, deflate the cuff and pull it out with a cough.  It was quick and mostly painless. There he was. My beautiful son without a breathing tube.  The first time in 10 weeks. 10 long and horrific weeks. 

They immediately slapped on nasal cannulas to continue the limited support he was getting with the vent. We got a new vent. It is smaller.  I am told he won’t need it for too long. I thought it made him look like an elephant.

He couldn’t close his mouth at first. He had to work on gaining the muscles to close his mouth. So weird.  

I asked him to smile. He tried to flash a big smile but also doesn’t have the muscles for that either.

I asked him if he could talk.

“Hi” he mustered up mostly a whisper but I heard the slight hum of his voice. I immediately had tears of joy soaking into my mask. “I have waited so long for this.”

I threw my arms around him to squeeze him gently. A month ago things were not even close to this stage. Things were bad.  Things were really bad. He was bleeding in his lungs and almost had to go back on ECMO.

He rested with his new breathing device. He watched some TV. We made some adjustments to the tube holder. Now it is tolerable for him. He doesn’t like it because it hurts his nose, but it is tolerable.

Then Janice’s circuit needed to be replaced. So Ethan was pretty free. He was able to sit up with help, stand, sit stand and lay back down.  Tomorrow likely will be a day where he can be in a chair? Fingers crossed.

He has to get another arterial line placed. These are fairly decent sized and will be quite uncomfortable. This kid has been a pin cushion. Multiple blood draws a day, injections to stimulate red blood cell production....I feel so bad for him. He has bruises and scabs all over from getting poked here and there. Arms, hands and feet are all bruised up. Then he gets blood drawn from the bruise. Ouch! At least the arterial line will alleviate all the multiple pokes and they can just draw blood from there.

I have noticed improvement on his strength. He is now able to pull his boxers down. He can turn in the bed and scoot his butt off the mattress which he wasn’t able to do a week ago.

Each day he just gets stronger and stronger. Let’s hope his X-ray remains clear tomorrow morning. What a gift today was for me.