"Change, when it comes, cracks everything open."
Dorothy Allen

Thursday, November 18, 2010

Surgery Day

Sebastian made it through his surgery.  More importantly, I made it through his surgery.

The morning started early.  Dad came by at about 10 to 6 in the morning, to pick up Sawyer.  She is spending the night there, so that if we have a rough night with him, we aren't keeping her up.  Also, she isn't here climbing all over him and driving everyone crazy with her love.
Bastian and Minnie

After Sawyer got bundled off, I woke up Geoff and Sebastian, and we got ready and went.  Sebastian was allowed to wear his own pants and underwear, so we dressed him comfy and warm.  His surgery was scheduled for 8am, and we were supposed to check in for 630 am.  However, at the pre-op tour, the nurses on the floor said they weren't equipped to take the kids much before 7am.  So we were in no rush, and took our time.  We got there about 10 to 7, got checked in and made our way to the Paeds wing.  A very friendly nurse took us and another family to a room at the end of the hall and got us ready.  Sebastian got weighed and measured.  He hated the oxygen test (a clip on the end of his finger) and freaked for the blood pressure.  *sigh*  Why is everything difficult? 

 
Minnie kissing Mickey- his favorite

Baby Bop for Sawyer
Anyway- other than that, he was super excited to be there.  The last time he was, they cancelled his surgery, so nothing untoward happened and he just had really good memories of his time there.  He also really loved the Disney characters all over the walls, especially the one with Minnie Mouse kissing Mickey.  Last time, we took his picture in front of it, and we did it again today.  We also got a shot in front of just Minnie in her electric blue dress, and a picture in front of Baby Bop for Sawyer. 

Daddy and Bastian, just before goodbye.
 

in the playroom, waiting for a few minutes.
Shortly after that, they came to get us, and took us down to the waiting area.  We only sat for a few minutes when the new anthetist (not the crazy, don't-look-in-her-eyes one from last time) came in to talk to us.  He asked why the last surgery had been cancelled, and we told him.  He asked about the heart murmur that the last one had heard. I was straight with him, and said that Sebastian has had dozens and dozens of doctor's appointments over the years (probably closer to hundreds) and NO ONE has ever heard a heart murmur. No, he doesn't turn blue.  No, he isn't often short of breath.  Yes, he is active, and is in fact more active now that he probably ever has been before. 

He seemed satisfied, and took a listen for himself.  He was very thorough.  He listened a lot.  And yep, he heard it too.  Shit.  Shit.  Double shit.

I thought for a couple of minutes that they were going to cancel again because of the murmur.  However a nurse came in, ready to take him down.  I asked if they wanted me to come down, to help pave the way.  Normally, they don't let parents into the operating room.  But because of the autism, she was willing to ask.  I also didn't push it.  I knew he would be fine either way, but I thought it might make their lives a little easier, if they let me help them.  Another anethetist came in, and asked more questions.  Once he heard about Sebastian's previous surgery and successful recovery, he was satisfied, and willing to proceed.  He was also happy to let me walk him down. 
Mom and Bastian- getting ready

I didn't realize that I would be going right into the operating room.  Last time, I stayed with him in a type of staging area, where they gave him a sedative, and suited him up with booties and a cap etc.  This time, we walked right down.  They gave me a hair net, and I got a cool gown, and Sebastian thought that was pretty funny.  I walked right into the operating room with him, he still had his sneakers on.  I helped him up on the table, and helped them fasten the monitors to his chest and his foot.  I held him down, when he fought the face mask, but he fell asleep in about 30 seconds.  After that, they asked me, very nicely, to leave.  Everyone in there was amazingly nice and very sweet to Sebastian.  That went a REALLY long way in helping me feel better about leaving him. 

I went back upstairs to wait.  I knew the surgery would be quick, they are pulling 2 baby teeth.  Geoff ran across the street and got us Timmies- bagel and juice for him, BELT and tea for me.  Side note: Geoff had no idea what a bagel BELT was.  He thought I was making shit up.  God.

After belting down the belt (haha), I just opened my tea to let it cool, and the doctor came in.  He said Sebastian was done, and the surgery went well, no stitches needed.  He was in recovery and someone would come  to get me soon.  No sooner had he left, and a nurse came in and told me to make my way down.  Only one parent is allowed, and Geoff and I had agreed that it would be me.

I found it pretty easily, and walked in.  There was one area in the corner curtained off, so I assumed that was him.  I was right.  I walked over and behind the curtain was greeted with the sight of my son being pinned the bed by 3 nurses.  One of them, an older lady looked up and shook her head.
 "We need your husband." 
I must have looked confused, because then she explained that they needed someone strong enough to hold Sebastian down.  She looked me up and down and asked "Do you think you can do it?" Seriously??  After all the shit I have been through and had to do to this kid??  Really???
I immediately said yes, and asked them to drop the side of the bed, so that I could get in with him.  Last time, I ended up crawling right in the bed with him, and wrapping him up with my arms and legs to hold him still.  I was willing to do it again. 

I think, once they realized I wasn't going to get the vapours and start freaking and crying and screaming "GET OFF MY BABY!!",  they chilled out and were actually SUPER nice to me.  I think I earned some respect when I flipped him up and over and got the IV line from underneath him and cleared it.  Sebastian wasn't even aware that I was there in the beginning, because he kept crying for Mommy.  It hurt my heart, and I cried most of the time I was down there, but until I looked up at the nurse, she has no idea that I was.  That was later, and she just quietly patted the tears on my cheeks and never said a word about it.  Neither did I.

I pinned his one arm around me, and held the other, the one with the IV in his hand, in an iron grip.  He tried with every ounce of strength in his body to rip that IV out.  In his flailings he caught one nurse, a younger one, right in the cheek with his fist.  He has poor upper body strength, but he still snapped her head back a bit.  To her incredible credit, she didn't bat an eye, or move an inch, or even raise her voice.  It was 100% an accident, and she knew that.  Sebastian also stuck his finger in my eye.  It watered uncontrollably for about 2 minutes, and the nurse alternated cloths- one wiping the blood from Sebastian's mouth and face, and one mopping up my streaming eye. 

After about 5 minutes of Sebastian alternating between falling instantly asleep, to waking and trying to pull everything off of his body, the older nurse, God bless her, decided to use common sense.  Since the IV was what was driving him crazy, we would take it out.  The other nurse hestiated a bit, also for practical reasons- the doctor wanted it in, if he started bleeding or having problems, it was there and ready.  The older nurse said that if they needed on, they would put it back, but for now, it was what was causing the problems and it had to go.  In 30 seconds, they had it out, and Sebastian almost instantly calmed down.  He was in my arms, and his head just dropped to my shoulder and he was instantly asleep. 

He woke again, just a few minutes later, agitated because of the cotton ball and tape on his hand, for the bleeding from the needle insertion point.  Again, common sense prevailed, and the nurses whipped it off.  They asked me to keep an eye on it for excessive bleeding (it didn't), and then got me a giant rocking chair, and let me hold him in my lap and rock him and let him rest.  I swear to God, they were angels. 

He and I rocked for about 5 or 10 minutes (I am really  not sure, I lost track of all sense of time).  The nurses started asking me questions about autism, and seemed genuinely interested in my answers.  They wanted to know, for the future, the best things to do and not to do.  I gave them the only advice that I knew would work- ask the parents.  Let the parents help.  They know their kids, and they know what works.  I said when you know one kid with autism, you know one kid with autism.  Every case is different.  But I did tell them to do what they did today- use common sense, bend the rules when it makes sense too, and be caring and sensitive.  They seemed happy with the compliment, and were grateful.

After a few more minutes, they decided that we could move Sebastian back to his room.  I offered to carry him, he is relatively light, and it wasn't far.  However, Sebastian woke up, and for the first time, seemed to realize that something had happened to his mouth.  He started grabbing at his lower lip, and pulling it out.  His mouth started flowing blood again, and he got extremely agitated.  The nurse asked if she should call for Geoff and I said yes, I couldn't hold him and keep his hands out of his mouth at the same time.  She called up, and requested that Geoff come down.  An orderly got there first, and we loaded Sebastian onto a gurnery.  He seemed to like that and calmed down quickly.  Geoff caught up to us at the end of the hall and we all made out way to his room.



Fat lipped Bastian.
 He wanted to see what was wrong with his face,
so I took this picture to show him. 
This is after the recovery room,
and shortly after returning to his regular room. 
He is still pretty out of it here.
 
Sebastian kept crying "Take it off, take it off!!"  It took us a while to figure out what the "it " was that he was talking about.  He was pulling at his lower lip.  Essentially, it was the freezing in his face ( they gave him a local, to help with the pain when he woke up) that made his lips feel big.  He said once "It's big, make it smaller!"  I sympathized, because I hate that feeling myself.   When we got to his room, the parents of the other little boy were in there, waiting to hear about their son.  I think we freaked them out a little bit.  Sebastian, while getting better and nowhere near what he was like in recovery, was crying and asking us to take his lip off.  I had blood smeared on the sides of my face and sweater.  Geoff had a white-eyed, white-knuckled look about him, that being helpless in a situation tends to give dads.  The only thing that seemed to help Sebastian was when I told him I would try and wipe the extra lip off his face.  I would dip a kleenex in ice cold water, and rub it gently along his lower lip.  It seemed to soothe and calm him, and within 15 or 20 minutes, he was close to his old self, laughing a little, listening to the stories Daddy read him over and over, and even drinking some juice and water.  The parents across from us got their little boy back- who was all smiles and sunshine.  Jerk.  They were very nice though too, and offered to share popsicles with Sebastian.  He didn't want them, but he did wave to Noah, and said good bye later as we were leaving.

Bastian feeling better and a very relieved Mom.


Almost ready to go home.  Smiling just thinking about it.

He recovered quickly from that point on, so that they actually let us go an hour before we expected to be released. He had drank all his juice, we got him cleaned up and washed off, and he was able to stand and walk on his own.  He really wanted to print all of the pictures that we had taken during the day, and we had a prescription for painkiller to fill.  We made it as far as the pharmacy (I got a Christmas present there!  Multi-task score!) and then he was getting antsy.  I think the pain meds they gave him before the surgery were wearing off.  Geoff dropped us home, ran out for apple juice, ginger ale and pictures.  Sebastian and I got snuggled in bed (well, he did, I folded laundry and put it away, so that I could relax and not think about it).  He drank lots and has now had 3 bowls of applesauce (homemade by Grandma and Grandpa!  Thanks!)  He is begging for peanut butter and jam, but since he is supposed to be liquids only today ( I am cheating with the applesauce) I don't want to push my luck.  He has marks all over his face and neck from tape and clamps and other things, and huge dark circles under his eyes.  But, as with all things in his life, he has come through it with flying colours, and surprised us all.  What a trooper. 

I know this is a super long post.  I didn't write this for you, loyal reader.  I wrote this for me.  I want to remember this.  It was a good day. :)

Rosie N. Grey
The N stands for "new deposit for the tooth fairy."

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