Saturday, November 15, 2014

Mom Hijack: Thoughts Outside the OR


It doesn't matter how stoic, resilient or strong you are when your child goes into the operating room. I would describe myself with those qualities periodically, but when I'm holding my son's hand as the anesthesia puts him to sleep, there is no ability to hold back tears. He even laughs a little as the strawberry-flavored medicine relaxes him. His breathing becomes a bit labored and then he's asleep. The surgical team assures me they will take good care of him, and I trust them because I have no choice. The thought of not trusting them would put me over the edge.

g tube surgery
Pre-surgery
I walk out of the OR and compose myself- for a while. I gather our things- suitcase, bag of "stuff to do", and an empty wheelchair. It's not long after I settle into the waiting room that I start talking with another mom with a 2.5 year old daughter who is going in to have her bone marrow donated to her 5 year old sister. The sister has sickle-cell anemia, and has been in and out of the hospital her whole life. We both can't help but cry. She has two kids in the hospital now. I try to distract her daughter, by asking her questions through weepy eyes- but she's not fooled. I'm thankful when they get called in because I don't know what to say any more. 

I move to another waiting area to access the wifi. I need some distraction from my own thoughts. Put a message on FB to get the positive energy going, have a granola bar, start writing. I get a few text messages wishing Kai well. Rob is stuck in traffic on his way here. 

Kai is having four procedures with a huge team of people taking care of him. That means you sign multiple consent forms that all list the possible risks of each procedure: bleeding, infection, perforation, organ blah blah blah... I stop reading them completely after the third. 

First doctor report: 8:42am
 Dr. McGill, ENT
He drained lots of fluid from Kai's left ear in preparation for the ABR hearing test, which will be the third procedure. 

I guess it's time to go get some tea. The next surgeon will take awhile to finish. On the elevator ride down, the song Blackbird, by the Beatles is playing in my head. Probably because I watched a youtube video of a father singing it to his dying baby (named Lennon) in the NICU, just after his wife died. More tears. Thank you Au Bon Pain for saving me from myself. Bacon and egg croissant please. 

Now, back to FB. I have my issues with FB, but I must admit, people's comments and "likes" can lift my spirit. So thanks to all who sent their positive vibes. :)

Rob arrived around 9:30 and the nurse liaisons told us that Ryan Seacrest and Usher were downstairs dedicating the new patient entertainment center and Seacrest Studios. What a nice distraction. Children's Hospital Boston is apparently the 8th hospital studio that the Seacrest Foundation has donated. Usher, the Swon Brothers (The Voice), and Shawn Mendes (new teen pop star) were there to dedicate the studio and be part of the first broadcast. Some very lucky hospital kids got to take part as well, including one boy who has spent a good part of his life at Children's Hospital Boston having open heart surgeries, and is waiting a heart transplant. Big lump. It just doesn't stop around here. 
Ryan Seacrest

Usher
We watched the broadcast on a permanent large screen that is in the lobby of the hospital. Kids staying at the hospital will get a chance to take part in broadcasts, watch from their room, and request music from their rooms. 

Second Doctor Report: 10:45am
Dr. Jaksic, general surgery
He said everything went very well. The hernia repair was easy and they could see the healed stitch from the other hernia that Kai had repaired as an infant. The g-tube is now placed. This is the most difficult part for me. A button now sticks out of Kai's stomach so we can attach a tube and give him nutrition, since we are unable to provide enough by mouth for him to gain adequate weight. So starts a new chapter...

Facebook is a really nice distraction. And so is Ryan Seacrest- especially when he's not being cheesy. He was actually quite impressive. Seemed down to earth. Does he do drugs? Something I always wonder about when I am star struck. It's disappointing.

 Third Doctor Report: 11:30am
Audiologist
She said the test went well. Kai has normal hearing in both ears and the sound is reaching his brain. No way to know how he processes language from this test- would give a lot to have that one answered.

Spending too much time reading about little Lennon and his Dad. Tears and more tears. Why do I do this to myself?

Last Doctor Report: 11:59am
Dr. Rufo, GI
Everything looks good. He took some biopsies for routine procedures- not because there is a concern. He is in recovery. They should come and get us in 10 minutes or so.

The anesthesiologist equated his part like a plane flight, take-off and landing is when there are most likely to be issues. Hopefully landing will go as smoothly as take off.

12:06 ho hum
12:08 i hope they really meant 10 minutes
12:09 wow, they are good! Kai is awake! Time to start breathing again.
Post- op- not a happy boy
 

24 hours later- a much happier boy!



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