Thursday, April 4, 2013
The long way home- Part 2
So, Day 2. Big day. Surgery Day.
We started the day a bit later than Monday. Monday we were up at 4am. Tuesday, we got to sleep until 5. Yahoo. Our check in time for the surgery was 9am, but we also knew that the roads would be busier, since the holiday weekend was over. Geoff's mom, Kathy was coming with us to help out, so we were picking her up as well.
Sebastian was fasting, but was allowed to have a bit of clear fluid up until 7am. He had a glass of apple juice around 5am, and brushed his teeth. We dressed in comfy clothes and our WAAD (World Autism Awareness Day) t-shirts. I packed a change of clothes for me and for Sebastian. We will still a little torn about staying over. The hospital had advised that they wouldn't admit him unless there was an issue and I didn't feel right about asking to stay at Ronald McDonald house (if you see some of the parents and kids there, you would understand. I couldn't in good conscious take a spot away from someone else that needed it way more than I did.) The hospital has a discount rate with the Delta Chelsea down the road, so if we needed to stay over, we could do so there. Since we had to be back in TO the following morning for a 930 am echo cardiogram, I didn't relish the thought of coming home, sleeping, and then waking my newly operated on boy at 5am for another long drive. I was still undecided about it all, so I packed clothes, just in case.
About 10 to 6, we headed out. Picked up Geoff's mom and on the road. We were right, there was more traffic than the day before. Geoff got me a Garmin GPS for Christmas, so we used that a bit to navigate the Toronto streets when Geoff opted to leave the Gardiner Expressway and take the Lakeshore route. We made it by about 745, still lots of time. I much, much prefer to be early than late, or even just on time. Early is always better.
We had a tea and showed Grandma around. Sebastian introduced her to the big Mickey Mouse in the food court, all painted up like a galaxy. He showed her the animals on the windows in the atrium. Then he got a hold of Geoff's iPad and started watching his videos. We had learned our lesson the day before and picked up some headphones for him. That was a big help. Eventually we moved upstairs to the CDIU to check in for our surgery.
The Unit was much less busy than the day before. There were a couple of families waiting for clinic and pre-assessments but that was it. We checked in with no problem, and Sebastian took over the computer they have set up, just for the kids. Kathy and I sat and chatted, and sooner than I expected they called us in. Sebastian and I went together.
The nurse brought us into the recovery room, where Sebastian would come after his surgery. She gave us some pajamas for him, and took some baseline vital sign readings. He got dressed and enjoyed laying in his bed. Olga, our nurse was lovely and brought a DVD player and TV over, along with a big book of movies. Sebastian picked out Happy Feet and we settled down to watch.
Now, I had been telling everyone and their brother about Sebastian and how he comes out of an anesthetic. He has been under about 6 times now, so I have a pretty good understanding of what will happen. He wakes up swinging. My wonderfully calm and complacent son becomes very violent and strong. He usually focuses 100% of his energy on one thing, and one thing only- his IV. Although he has never actually been able to pull it out when I was with him, he caught Geoff by surprise when he was last under for his first echo at McMaster. Yanked that sucker right out. He is super strong and slippery and he holds absolutely nothing back. He goes full out, non stop until 1 of 2 things happens- he either yanks out whatever it is he doesn't like (and then he moves onto whatever bothers him next) or the drugs wear off. I always pray for the 2nd one.
Anyway, I had been telling EVERYONE about this. They needed to know. I understand that they deal with kids all the time and have probably seen everything, but I didn't want anyone to be caught by surprise. They all seemed to take me seriously and we had some good conversations about stuff that has helped in the past (i.e. take the damn IV out, if you don't absolutely need to have it in) and stuff that hasn't (i.e. trying to reason with or shame him into listening.) I felt like we were in a good spot. Sebastian's spirits were high, and I was feeling pretty positive about things to come.
Sebastian started asking for his pictures and his daddy, so I went out to the waiting room to get both. They only allowed 2 visitors for each patient, so Kathy had the dubious but completely necessary task of watching our shit. My purse, Geoff's bag and iPad, my bag with the changes of clothes- all of it got left on her, whenever we got up and ran to see him. I will be eternally grateful that she took that pressure off my mind completely. I never worried about where I had left something, I always knew it was with her.
Geoff came in to sit and wait with us. We had opted out of giving him sedation before hand, since they were willing to let me go in to the OR with him, and help him go to sleep. I knew if they did that, we would be fine without the additional meds. In the last half hour before his surgery, we met with the 2nd doctor, Dr. Benson- who gave us another run down of what to expect, the OR nurse, who was the one who was going to get me gowned up and ready to help in the OR, and the anesthesiologist. I forget her name but she was a lovely British lady. She was so respectful of us and Sebastian. I usually have no fondness for them- the anesthetists that I have met in the past have all seemed incredibly arrogant and even weird. She was wonderful. She told us to make sure we brought his pictures with us, and that she would work around them. Anything he needed to be calm was OK with her.
Sebastian and I kept holding hands and tickling each other and laughing our little private laughs. He would smile at me and tell me "Mommy, you are so crazy." I wanted it to last forever. I didn't want to take the next step. But I kept thinking to myself - another 5 hours and this is done. Your son will be better. He will be healed. He will be whole. It's so fucking worth it.
Geoff was not doing so well. He leaked, constantly. He was worried and couldn't help but let it show. Sebastian didn't seem to notice and I didn't draw attention to it. I asked him once if he was keeping it together. He just nodded yes.
Sooner than I expected, and right on time, the nurse came to get Sebastian and I. She handed me a paper outfit and a hair net. Sebastian laughed when I asked him if I looked like a giant marshmallow. My hair net was hilarious. Geoff bent to say good bye and lost it completely at that point. Strong emotions like that can be confusing to Sebastian, so luckily, he shrugged it off pretty well and he wasn't upset as he and I held hands and walked ourselves down the hall to the OR.
I kept my voice light and fun as we oohed and ahhed over all the amazing equipment in the OR. They had a step stool for him to climb up into the bed. I helped to get him settled and he laid down so very well. The nurses asked if we could take his shirt off now, or wait for him to go under. I helped them take it off now, but the crazy kid decided to be a pain. It was just funny as he claimed to have his arms stuck and to wave back and forth with his head and arms still firmly encased in the surgical shirt. Eventually I tickled his armpits enough that he dropped his arms and we were able to pull it off. He laid his head back and they pulled the nicely warmed blanket up over him. I gave him a few pictures and he held them up to go through them. I held his hands as the doctor put the mask over his mouth and nose. They let him keep his glasses on. The had made the mask smell like strawberry jam, after they asked which one was his favourite. He looked at me and I looked at him. Neither of us cried, and I smiled so big for him. The doctor's British accent lulled him to sleep, literally, as she talked of playgrounds and sunshine. After about 15 seconds or so, she asked him to open his eyes. I asked him too. He didn't. He was asleep.
It was truly lovely.
I thanked all the ladies and made a joke about how they must have done this a time or 2 before. The OR nurse escorted me out, and I made my way to the waiting room, hoping to have Geoff take my picture in my outfit. I thought Sebastian would get a kick out of seeing Mommy in her marshmallow suit after he woke up. Geoff was nowhere to be found and Kathy was shocked that I had made it out first. Considering he had left when Sebastian and I had first made our way down to the OR, he definitely should have seen her first. I managed to find him in the washroom, getting his shit together. I went back and took off my outfit and threw it away. Eventually he joined us, and we made our way down to the food court for lunch. This was about 10 after 11.
The doctor had told us that the surgery itself was about 90 minutes. There would be another 20 minutes or so of them waking him up and having him back in recovery. Because of my many warnings, they told me they would bring me in as soon as he got back. My plan was to be back in the waiting room by noon, so that they could easily get a hold of me, even though everyone and their brother had my cell phone number.
Geoff and Kathy and I had a nice lunch. It was still a bit before the morning rush, so we had no problem getting the food without line ups or waiting for a seat. I texted everyone to let them know that he was actually on the table now, and that I would update as soon as I could, but didn't expect to hear much before 1230 or so. We stopped for a sweet treat at Starbucks and then made our way back to the waiting room.
Geoff had brought some comic books and sat and read. Kathy had brought her Kobo reader, but she very nicely sat with me, as I stared out the window or watched the kid cartoons on the big TV. She asked if I had brought anything to read. I had thought about it, but knew that I wouldn't be able to concentrate. I was right. I could barely follow an episode of Arthur. My thoughts were swirling and I tried with all my might to coalesce them into a positive stream of thought, focused solely on getting this kid out of this alive and well.
About 12:45, I mentioned to Kathy that I was taking the "no news is good news" approach. I had fully expected to be hauled into recovery right at 12:30, when they woke the sleeping giant. I remember saying to her, laughing, "either he is doing the impossible and sleeping, or he is Godzilla and is flipping tables in the OR right now. " She and I both laughed.
At 12:50, Dr. Benson came out. He wasn't smiling.
He took us around the corner. We had to wait for Geoff, because...I have no idea why. I wasn't looking at him. I was looking at this unsmiling doctor. The doctor that should have been smiling because everything had been textbook and was such a breeze.
He told us that the operation hadn't gone well. He said that there were 2 holes in Sebastian's heart. One was large and one was small. The large one was larger than they expected. It was 28 mm. I think he used the word massive.
They decided to patch the large hole and leave the smaller one. They put in the patch. They hadn't even started to attach it. Things started to go wrong.
Sebastian developed arrhythmia. His heart started to beat irregularly. He didn't arrest. But they had to shock him to reestablish a regular heart beat. Shock him. The doctor said those words.
Geoff left at this point. He sat down with his head in his hands. I stayed and listened to the doctor.
The doctor said they decided that they couldn't leave the patch in his heart. They removed it and that helped his heart reestablish a regular beating rhythm. They had been monitoring him and things seemed to be going just fine.
But this also means that the catheterizing is no longer an option. Sebastian has to have the open heart surgery. Another waiting list. Another operation. Another grasp at hope.
The doctor again reassured me that things were fine. Sebastian was heading to recovery shortly and we would be able to see him. I remember smiling at the doctor. Thanking him. I came around the corner, back to the waiting room.
Kathy was sitting beside Geoff, hugging him, but looking at me. She asked what had happened. Geoff couldn't seem to speak, so I told her. I broke, but I told her. I went back down the row of chairs to my seat. I dug grooves into the palms of my hands with my fingernails as I tried to get a grip. I had to stop crying, right fucking now. They wouldn't let a hysterical woman in there to see her son. So smarten up and just fucking stop.
I couldn't even look at Geoff. I didn't comfort him or say a word to him, although I probably should have. Geoff's mom came over and sat beside me. I let her hug me but didn't hug her back. I know now that I probably should have done that too. But I was clinging to my control by a single thread. If I moved, it would break.
I tried to talk, to make sense. I don't really know what I said. I think I talked about how it is always better to know, then to not know. I think I said that nothing is ever easy with this kid. He seems to always like to take the long way home. I said some other things. We laughed a little. Slowly, I came back into myself, present and accounted for.
It seemed like forever, but about 5 minutes later, the receptionist answered the phone and told us that we could go in now. I ran. Literally. Didn't wait for Geoff. Didn't say good by to Kathy. Got my ass moving, and got the fuck in there.
It was dim and he was sleeping. Completely cocooned in a blanket. That made me smile. He loves that. I knew he would be happy to be wrapped up like that.
A beautiful nurse was sitting quietly beside him. She introduced herself and for the life of me, I can't remember her name. She was my lifeline and I don't know her name.
She was taking his blood pressure readings down. She explained that for the first hour, the machine would read him every 15 minutes. After an hour, it would change to every 30 minutes. She explained that they had gotten him at 1pm, and if all was well, he could go home at 4. I didn't think anything of it at the time, but it turned out, she had the time wrong.
It was very quiet in recovery. Geoff sat in the chair next to me. I tried to touch Sebastian's face and hair, but that was too much. I stopped. I wouldn't be able to do this and I was deathly afraid of waking him up. So I sat. I stared at the ceiling, the wall, the clock. I stared at the numbers on machines that kept track of the fact that my son was still alive. Geoff cried quietly beside me. We didn't speak or touch or even look at each other. Everything was frozen and no one wanted to move and break anything.
Sebastian slept on. For 2 hours, he slept.
Occasionally he would open his eyes. The first time he did, he looked me right in the eyes. I was thrilled that the first and last things he say before and after his surgery were my eyes. He rolled over and went back to sleep.
The nurse eventually explained some of what was on him, and what we were seeing. She showed us the big pressure bandages on his hips. She explained that he needed to stay as still as possible for 4 hours after the surgery to make sure there was no bleeding from the sites. It was OK for him to flip from side to side, but no lifting his legs or trying to sit up. She told us the IV was still in his hand, but not attached to anything, so there was nothing for him to pull, when he woke up. It was completely wrapped in gauze, to prevent him from getting a grip. She said if we could keep it there for an hour, at least, we would be better off. She told us that they hadn't given him any sedation after the surgery, but they had kept the anaesthetic going right until the end. Normally they stop it a few moments before they extebate the patient, but that sometimes the removal of the tubes from their nose and throat can jar them awake. After my many warnings, they decided that would not be good for Sebastian, so they made sure he stayed asleep.
After about 40 minutes, Geoff got up to get a drink and to update his mom, to let her know Bastian was still sleeping. He asked if I needed anything, and I didn't. He left and I was alone with Bastian.
I put my head on the side of his bed on the railing. I closed my eyes, because they were so very sore and tired. I tried to pray, but all I could think was "Please God." I figured, if there was a God, He knew what I was asking for. I didn't need to be anymore specific. Now that I was alone, I let the tears come. I wanted to get them out and gone. I didn't want to share them with anyone else. I held my head down and let them drip on my shoes. Like I suspected once they started, I couldn't stop them.
The nurse came back to tell me that she was going to go grab something quick to eat, but would be back in 10 minutes. When I looked up and tried to smile, she just knew. She apologized that things hadn't gone the way we wanted. She said "I am so sorry that this is happening to you and to your son. You seem like such nice people". I tried to talk, to thank her, but nothing came out. She brought me a kleenex and told me that it was OK, that it was alright to cry. I managed to say that I didn't want to be like this in front of my husband or anyone. She understood and patted my shoulder. She drew the curtain a little, to give me some extra privacy.
Sebastian's blood pressure cuff went off a moment later. Olga, the nurse from before the surgery came to check and document it. She looked at my face and gave me a sad smile. I said I was sorry, but she just shook her head and she too, left me alone. I slowly gathered my shredded composure back around me, and shook it off. It was my 10 minutes. I had used it up. By the time Geoff came back, I was swollen and tender, but back in control. At least a little.
Sebastian slept on.
I was texting back and forth with my mom. She knew what time the surgery was. When I wasn't sending her updates right away, bright and sunny ones full of Popsicles for dry mouths and funny "coming out of the drugs" stories, she knew something was wrong. It wasn't the best thing in the world, but I told her what was going on via text. It was easier that way. God help me, I wasn't up for a face to face conversation. She wouldn't have waited that long anyway.
Others were texting me too- Zendra from work, Shannon from work, my sister in law Dawn, Teresa and others. I tried to reply as best as I could. When I wasn't able to, Geoff manned my phone and fired the replies back. Sometimes, I didn't know what to say, so I didn't say anything.
Zendra, as it turned out, was actually at SickKids as well, for an appointment for her son. She managed to find me, and Geoff sent me out to visit with her for a minute, to give me a chance to stretch my legs. She was very sweet and gracious and gave me a beautiful card. It was so heartfelt and wonderful, I was (and still am) incredibly grateful.
Just after I returned from my quick visit with Zendra, and as Geoff had left again to stretch his own legs and use the facilities, Sebastian woke up. One second he was asleep. The next second, he was awake. One more second, he was trying to tear the gauze off of his hand with his teeth, to get at the IV underneath. Geoff came back in a minute or so, and I asked him to go tell the nurses that Sebastian was awake and agitated. To their credit, they came on the run- 2 of them. Apparently, they took my warnings seriously.
For the next 30 or 40 minutes, we waged war with the drugs that were still in Sebastian's system. My hope had been that he would sleep most of it off and we would have little to no problem with him, once he woke up. No such luck.
The nurse was great. Everything Sebastian went after- if it was at all possible to remove it, she did so. She did it carefully and correctly, but she did it. She spoke to him (not us. That is an important distinction) in clear, confident tones. And sometimes, he actually listened to her. She removed his IV. Then his id bracelet. Then his O2 monitor. Then he went after the pressure bandages. Those couldn't come off.
Eventually, we ended up with me laying across his legs, to keep them down, since he was trying to kick people in the face. Geoff held his hands and arms down. I would use my head when I could to try and push his upper body down, when he tried to sit up. The nurse had told him that the bandages could come off at 4pm. We were all counting down. We were at about 3:45, when Olga came up and pulled our nurse aside. I heard her tell our nurse that she had miscounted. The bandages couldn't come off until 5pm, not 4. We had another hour and 15 minutes of this.
She was so frustrated with herself. I could tell that she was trying to think of anyway around it. I knew there was none and that was fine. From my position across the bed, I blew the sweaty hair out of my face and told her not to worry about it. If I had to stay there for the next hour, I would. I knew I wouldn't have to, since Sebastian was already starting to come out of it. They had brought the TV back over to help distract him. He would become almost trance like, staring at the screen. Suddenly he would snap out of it and fight to get free. But the trances were becoming longer and longer. The fights became less physical and more verbal. Slowly he began to laugh again. And talk to us. He pulled his blankets down to see the bandages and didn't try to pull them off. He wanted me to take pictures of them. I sat between his legs and gave him deep pressure massage on his knees and ankles while Geoff did joint compressions on his fingers.
And all was well with the world again.
The last hour was fine. He was nice and calm and we were able to watch movies and joke a little bit. We took some pictures and Grandma finally came in to visit with him too. I took a bit of a break and spent more that 2 minutes away from him. It was hard, but I was a big girl and made it through. Kathy came out to get his pictures and said that the bandages were off and he was dressed to go home. I headed back in.
We just had to wait for the doctor to come and sign off on his release. Because of the fighting, he had had some bleeding from one of the wounds, but the blood in the bandage, when they pulled it off, was dried. That was a good sign. The doctor was there quickly and was happy to let us go home. He apologized again, and was very kind. I have nothing but the utmost respect for him and the work that he does every day. He is kind of magical.
I thanked all the nurses as we left, Geoff pushing the kiddo in his wheelchair. Our main nurse, whose name I can't remember, I wrapped in a hug. For the 3rd time, I started to cry. I hugged her as tight as I could and she hugged me back. It wasn't a hug from someone humoring me, but felt like one survivor comforting another. Her eyes were shiny when she smiled and told me good bye.
We headed out to collect Grandma and our stuff and to start for home. The silver lining in all of this was that we no longer had to come back to the hospital on Wednesday for the echo, so we were going home for good.
Sebastian said good bye to all the pictures of the animals in the atrium, particularly the hippo. We wheeled him to the garage, got him settled in his seat, with a movie and some cookies and crackers and his favourite blue blankie. I climbed in back with him and we were on our way.
With it being about 530, it was the middle of rush hour and it took a long time to get home. I had a huge migraine coming on, and felt nauseous most of the way. Sebastian was hungry and thirsty, so we stopped and got him apple juice and french fries. He was pleasant all the way home. I just wanted to sleep.
We made it home by 8. We dropped off Kathy then made it to our own place. I brought Sebastian right up to my bed. We changed him into his PJ's and checked his band aids again. The nurse had given him a big dose of Tylenol before we left for this discomfort so Geoff ran out to get some more. We dosed him again around 10pm.
I climbed into bed with him. We watched some movies, but I was too tired and my head hurt too bad to concentrate. I checked Facebook, to kill some time, and wait for my own Tylenol to kick in.
The posts on Facebook broke me. Again.
There was so much love and support on there for us, I couldn't believe it. Facebook was all about Sebastian. It was amazing. Everyone was commenting and updating their statuses. I had 8 different messages from people, all asking how things were, offering to help, just telling us that they were thinking of us and that they loved us. I was overwhelmed and so truly grateful. My texts were still coming in, offering much of the same- love, support, help.
Eventually, though, I had to shut it down. Sebastian, with his sunken eyes, and tape bruises on his face needed to sleep. He was smiling and laughing and kissing me but he was exhausted. So was I. I asked Geoff to sleep near by. When he is displaced in our bed, he has a tendency to sleep in the basement. That is all fine and good, except he can't hear me if I need help with a vomiting child in the night, or if someone has nightmares and wants their daddy. He spent the night in Sawyer's bed, since she was still with my mom and dad.
I took a picture of me and Sebastian at the end of our long day. My eyes were so sore, I couldn't touch them. My head was pounding. Sebastian was falling asleep in between his bouts of giggles and saying his body ached. He was pale as a ghost with dark circles and tape bruises. It was time for bed.
We were home. Took the long way. But made it safe and sound, if not entirely whole.