Ayrie looking at the Charles River out his hospital room window
We were back in Boston this December for another surgery. As usual, Ayrie was so excited to be there. In fact, on Christmas morning Ayrie ran around the house waking up the aduls and when Emily asked him if he was excited that it was Christmas morning, he said, “Yes, and I am excited that I am going to Boston soon!”
We checked in to the hospital at 8am and the nurses were happy to see us again. By now we have made some friends! I looked at the board behind the nurse’s station and saw a long list of kids names with ‘Hartnick’ next to their names. I don’t know how he does it! He’s on his feet for at least 12 hours, with complicated surgeries to perform and complicated parents to talk to.
We are show our room and Ayrie quickly changes into his tiger pajamas to he can run to the play room. But before taking off down the hall he climbed up onto the air vent to look out the window. The view from the hospital is one that fancy condo builders must be so envious of! I captured the moment in the photo above.
The play room was full of kids waiting for Dr. Hartnick. Some of them had rare complicated undiagnosed diseases and others were getting their tonsils out. I kept think that the parents of kids getting tonsils out by Dr. Hartnick have no idea that its analogous to taking a lamborghini to get your milk at the convenience store. But everyone deserves a great doctor so go for them!
When Carlos came to lead us down the back hall to the service elevators Ayrie didn’t even seem nervous. We loaded the utlitarian steel elevators with other medical persohnel, another child and his family, and a food cart. When we got off at floor ‘S’, we were led to a bed in the pre-surgery galley right next to the toy shelf. Ayrie couldn’t decide what to play with so Ashely, the child life specialist, put a sheet on the floor and sat down to play trucks and do puzzles with Ayrie while we waited for our OR to become avaiable.
While Ayrie and Ashley are playing Dr. Hatnick, different nurses and anesthesiologists come to meet us. They ask a lot of questions, fill out charts and request signatures. By now I can go through that part of the process without thinking. But I am always struck by how people at MEEI do these routines with such a personal touch. Nancy took the time to look up the anesthesiologist from the last surgery (Dr. Collins, who was excellent!) and talk to me about anesthesia and quality of care. We talked about Ayrie, about Dr. Hartnick, about complicated surgeries and about her nephew. I understand that she is essentially Dr. Hartnick’s head OR nurse and that is very comforting to me. She clearly is both a skilled nurse, and someone who cares deeply about the children in her care.
Nancy finds the anesthesiologist and they come back to the galley to wheel Ayrie to the OR. I pick Ayrie up off of the bed and we walk into the room and there are a few OR nurses in there getting the room ready. It’s smaller than other OR’s we’ve seen and seems less full of equipment and extra people. It seems basic and efficient. The KTP laser is in the room but it’s not obtrusive and I barely notice it. I sit down with Ayrie on my lap and the doctor has him blow into the mask in order to blow up an attached balloon. He keeps asking Ayrie to blow harder and draws a silly face on the balloon. Ayrie doesn’t cry at all as his eyes get heavier and heavier. All of the sudden his eyes close, he coughs, his body shudders and he drools. Everyone says ‘good job mom! ayrie did such a good job!’ They untie the back of his gown and I lay how down on the operating table. Nancy always reminds me to give Ayrie a kiss goodbye before I leave the room.
The waiting part is hard. But no news is good news, right? So I go to the nurses station to get a beeper and hustle down to the 7th floor for some lunch. By now it’s 12:30 and I didn’t have breakfast that morning because Ayrie was fasting and therefor so was I. I take the lunch back up to our room and sit next to the window, lost in thought. Before I ate I sent out a text message update to families and while I eating I check the responses that come in. When i am done eating I flip through a magazine. I can’t concentrate on my work or on the book that I brought, “The Tipping Point.” Finally, the call comes and I am directed to go down to the PACU.
The PACU is a large room that looks crowded and old, but the equipment is well organized and the nurses are excellent. They have rocking chairs next to the beds for parents to sit in while we wait for our children to wake up. No matter what, the kids spend at least an hour recovering in the PACU. Usually when I go down Ayrie is still asleep and they have extabated him. Often Ayrie’s nurse is only responsible for him, or sometimes one other person. The anesthesiologists at MEEI do a great job and Ayrie usually emerges from the anesthesia without a lot of distress. Often in Chicago Ayrie would be distraught beyond comfort as though he was in deep, deep pain. At those times it was like I wasn’t even there when I tried to comfort him and watching him in such agony would hurt my heart.
Dr. Hartnick comes in to see me while Ayrie is sleeping and we look at the photos, talk about the procedure and make plans for the next surgery. This time Ayrie looked about the same as last time but there were about two and a half extra weeks between surgery. So the propranalol isn’t a miracle at this point, but progress feels great! We decide to schedule for 10 weeks next time unless there is a reason to fly to Boston sooner. 10 weeks sounds like a really, really long time!! We also decide that Ayrie will spend the night in case he responds badly to the saline injections. The news is pretty good and I feel lighter. And tired. The emotional weight of surgeries always hits me in the PACU after I talk to Dr. Hartnick. Before hand I am strong. Afterwards I an able to admit to myself that I was scared.
When Ayrie wakes up, the nurse takes up back up the the 11th floor. I carry Ayrie and the pulse ox and she carries the paper work and pushes the IV pole. Ayrie has to stay hooked up to an IV and a monitor until we leave in case there is an airway emergency. It turns out that he does have a swollen airway that night and I’m glad that we decided to stay in the hospital.
We check in the next morning with Dr. Hartnick in the clinic and we talk some more about propranalol and wheezing. He gives us the go-ahead to leave and we pack up, board the taxi and leave directly for the airport.
There is so much more that is meaningful that happens in these 24 hours, and yet I can’t capture them all now. So I’ll end here and know that you have a tiny glimpse into what a day at MEEI is like for us!
Nora
