December 1st the world over this year is getting attention for other things. World Aids Day, and the start of Hanukkah, to name a couple. But, in our house, it is the day the lion roared. The day our Max got up the strength to show us all he wanted to live. And in doing, coughed out the ventilation tube that was supplying his breaths for a month. The day of surgery to give him a breathing tube out of his neck, a tracheotomy, he coughed the tube out, and avoided it.
So, today, we say HAPPY EXTUBATION DAY!!!!!!!! Now, to celebrate by letting Max chat with his friends over Skype...then speech therapy...then school. Three things I never would have imagined would be happening 6 years ago.
THE DAY THE LION ROARED
December 1, 2004
I woke up with a new nurse leaning down beside me asking if this was Max's medicine he got now. My eyes focused and saw it was Max's emergency seizure medicine. “ No, put that back...he doesn't need that. You can go get his medicine out of the fridge, I will give it all to him." I don't like new nurses. We have our favorites. The ones who know Max. The others we tolerate. This one was rubbing me the wrong way. I'm sure I was just edgy from the activity of the day.
The doctors had all rounded off for the month...a whole new crew. Just as we are headed into the hardest part of our life all new people to deal with. The new attending came in to introduce herself and get the skinny on Max. She told me it looked like we were still on the schedule for surgery, but she didn't know when. I was sitting resting while Max slept. I still was in a fog about the day's events. Steve had to be working so he was at home. I sat and read a bit, watched some tv...just tried to get my mind off of it.
The nurse came in and told me he has been bumped from the schedule today, so they will take him to surgery tomorrow. For crying out LOUD!!!! Get it over with already! I had a lousy night's sleep and since Max was sleeping I decided to go back to sleep. No big happenings today. I laid down and tried to get to sleep. But Max was coughing a lot.
I called the nurse in and said maybe he needed some suctioning. She suctioned and said she was going to get him some tylenol just to help calm him down. I've never seen him coughing so hard. He was kicking his legs up in the air. He would lift his head up( a big deal for him) and would cough and cough and tears would come out and slobber all around. What in the world was going on. I started to get a little worried. The nurse decided to go ahead and tether his arms because he was reaching for the tube a lot. I was instant messaging Steve while this was all going on.
He started a big coughing fit...then the last cough...hhhiiiiiiiSSSSSSSSSSSS What was that noise??? Oh my gosh...he got that tube out. He COUGHED IT OUT!!!! The nurse FREAKED!!!!! She said some curse words...not the best attribute for a nurse at the Children's Hospital. I told her it was fine...he can breathe on his own. He is fine. I told Steve I had to go...he just got the tube out...shut the computer.
She still hit the emergency button that got all of the nurses and doctors running into our room. I grabbed my cell phone. I knew the drill. They were going to knock him out and throw that tube right down his throat again. I told the head nurse I would be right outside waiting. I tried to call Steve but my cell phone battery died. He was also freaking out. I just kept laughing. I couldn't believe Max coughed that tube out. A good three inches of tube he coughed out. Max is such a strong kid!
A nurse came out to the hall to get me. When I got into the room it was full of people. Residents and Interns, nurses and respiratory techs. “Are you mom?“hi I'm Anjali...I'm the new chief resident on this month.“
"Hi Anjali...we were going to name a baby girl Anjali...what's going on?“
I was trying to see Max. There were so many people around him. That's when she said,
"before this hospitalization, he could breathe fine on his own?“
"Yes of course.“
"And why are we doing the tracheostomy?“
"They couldn't get him off of the vent.“
That's when I got a view of Max. He was fighting with the respiratory tech trying to put oxygen on his nose. Then I heard a cry...no tube...what's going on???
Anjali said, "Well...I think he's breathing fine right now. Let's watch him on just some oxygen for a while and check his levels to see how is doing before we intubate again. Consider it one last day of freedom with him.“
I was stunned. I felt like we had just pulled one over on them! The nurse immediately got a blood oxygen level to measure his carbon dioxide and was given orders to do it every hour to see if they went up. While she was doing this I called Steve...filled him in. He was already on his way up to the hospital.
The nurse finished and I picked him up. No tube...just me and Max. He had to be calm...he needed me to hold him.
As soon as I sat down he went to sleep. Deep deep sleep. Big breaths sleep. I did cry...just a bit. I was so happy just for today I got to hold him one more time without that tube. Then I prayed..."God, you gave him the strength to cough it out...give him the strength to keep it out!“
Steve got there and was amazed. Max was just quietly sleeping. Steve wanted to hold him and give my arms a rest. I had been holding him for a good hour at this point. They checked his levels...they went down. Then another hour went by and they went down again. "Okay, we need to turn this oxygen down though...he is getting too much.“
We were stunned...STUNNED!!!!!! Did this really happen? All of this worry and turmoil and the little turkey coughed it out the day of surgery?
We held Max tight all day. I called the grandma's and had them pass the word around. What a big boy we had!
Around 5:00pm the ENT surgeon came in to tell us we were on for tomorrow. The lights were lowered because Max was sleeping. We exchanged niceties and she said..."WHY IS HE OFF THE VENT?“
"He coughed it out this morning.“
"He pulled it out?“
"No, he COUGHED it out and they just put oxygen on him and he is doing great...his cO2 is lower than it has been this whole hospitalization.“
"I'm not performing a trach on a kid who can cough a tube out...he looks way too good to need a tracheostomy.“
She talked to the doctors and told me she would see me again if she needed to, but it looked like Max didn't want to have a trach tube.
The end of the day they moved us to another room. It looked like Max was pretty stabile so they were going to put him with a nurse who could have two kids that night. It was Tammy...the first night nurse we had back in March. She came in and came over to give us a hug. She knew surgery was today. She looked at Max and said...where's the machine? What happened? Why is he just on O2? We filled her in and she cried. She was so happy. She told us later that night she has rarely gotten so attached to a kid like she has with Max.
Dr. L. came down to see how surgery went. He came in and looked at the machine that was off and looked at Max. He smiled and looked at us and waited for the story. We told him...he just nodded and said...we knew he could do it...WAY TO GO MAX!!!!!