Yesterday afternoon, as we waited for Cannon to wake up from surgery, we braced ourselves for the worst. We imagined there would be lots of screaming, kicking, fighting, and aggressive attempts to get this foreign body out of HIS body. And we had a plan. Mark would hold his freakishly strong legs and I would try and prevent him from going after the button with his hands. We had his favorite show pulled up via Netflix on our laptop….within perfect view. Ready to be un-paused. We had his menagerie of favorite stuffed animals and blanket there for comfort. I was snuggled up next to him. We even had some jello and a spoon handy along with apple juice incase he was hungry or thirsty. The anesthesiologists were warned and ready to give him a little somethin’ somethin’ immediately if things were to go south fast. The nurse put a sock over his hands that was taped on to slow his grabbing of the button and IV. We thought we had thought of everything. And so, we waited. And with his history of waking up like an animal, we braced ourselves. But no one…..especially not us…..could have dreamt up what would happen next.
Or what wouldn’t happen next…..I should say.
When Cannon woke up, he whined. That’s it. A slow, steady whine. Not a cry, scream, or true protest. Just a whine. I watched him closely. First, because I wanted the nurse to page the doc at very first thought of problem. Second, because I was so surprised. He never comes out of anesthesia well and this could have been the worst time yet. Then, I thought, this won’t last long. There is no way. One thing we did notice was that he kept touching his nose. He was fascinated that he woke up and there was no tube there. He even asked us where the tube was. Poor guy….so used to NG tubes. When they were prepping him to go up to his room, I thought……Great! He’s going to freak out in the elevator and we will be in trouble. But he didn’t. When we got to the room, he did start to cry. But you could also make a case for the fact that there were a lot of people in the room. A couple new docs checking him over, a tech doing vitals, and a nurse asking lots of questions. So, he was given Tylenol with Codeine and I was told to let them know quickly if I saw it wasn’t enough and they would administer Morphine. But we didn’t have to. We read over the 2nd social story we had written up for him (see the last post) a few times. Just so we could be sure he knew what was going on. At least in some capacity. All afternoon and evening for the most part, he just laid around. Watching a bunch of new videos and reading some newly acquired books. Purchased for the “occasion.” And he was a calm little guy. No one could believe it. The only real tough part was that he couldn’t fall asleep. He was up until midnight and briefly a couple of other times throughout the night. And then awake for good at 5 a.m.
I thought for sure my tired boy would be soooo grouchy. But he wasn’t. I think around 10-ish, he began grimacing in what appeared to be a pretty healthy dose of pain even with the Tylenol. So, we did ask for Morphine at that point. And he chilled right out. And hasn’t had any more the rest of the day. He has been cracking us up with one liners all day and even trying to negotiate for time in the playroom before he was released to get up and walk around. He told his day nurse to “Get out of town” when she tried to touch him at the beginning of shift. By the end, he was assisting in the placement of the stethoscope on his chest and then laughing at the reaction he got when he decided to “play the drum” on it while she was listening! Lots of smiles and a high 5 were her parting gift at the end of shift. All the docs and nurses are used to seeing Cannon here for a clean out. And he is heavily restrained, has an intrusive IV, and a tube stuck in his nose and down into his tummy. And he is grumpy and fighting any kind of contact or mere presence in the room. Not this time. He is being so accepting of vitals and talking up a storm. He wants to get up and move around. He has been playing in the playroom sporadically throughout the day. Everyone is totally shocked and enjoying seeing what the real Cannon is like. This reaction is really all we could have hoped for.
Now, don’t get me wrong. You make a move towards that dressing and the old Cannon comes back. And fast. Which is totally to be expected! He does not like that one bit. Every 6 hours we have been removing the dressing to flush the button and that is not a happy time for our guy. It is usually at least a 3 man job. But we are getting through it. And hopefully that will get better in time. In a regular kiddo, it would. But with Cannon and his extreme sensory issues, only time will tell. The surgeon is still of the opinion that that is doubtful and we don’t blame her for thinking that way. We are just going to pray that a miracle occurs and he develops the ability to cope with this new, scary thing.
I have spent a lot of the day in training. A specialized nurse has been instructed to teach Mark and I the ropes when it comes to this new device. We have learned how to clean and sterilize our instruments, the protocol for drawing the fluid that will do the flushing, and how to administer the flush into the button. We also had to learn how to put in a temporary catheter just incase he were to pull out the button. It is overwhelming and scary right now. But this evening, with a nurse and Mark holding him……I flushed it for the first time. Go me! 🙂
There is talk that if things keep going this well, we could go home tomorrow. He needs to be a little calmer during the flushing procedure, not require morphine, and for the wound to stay clean and free of infection. All looks good tonight but we will see how tomorrow goes. We are really praying that will happen.
Because we are needed at home. This difficult time in our lives is not just hard on Cannon. It is becoming hard on Townsend. He used to think the hospital was all fun and games. And even though he doesn’t like to see his brother hurt, there are a lot of fun things to do here. The library, toy store, interactive wall, train, therapy dogs, musicians, and playroom, to name a few, are a blast! While all the nurses and techs just love our little ray of sunshine and spoil him rotten! It used to be that he would show his distress once we got home from the hospital. He would insist on Daddy getting him when I would go to get him up in the morning. Because Daddy is the one who would take care of him when I stayed with Cannon. He tended to do that for 1-2 weeks after. Now, he has an occasional tantrum and purely doesn’t listen sometimes. Probably for attention. Even if its negative. When he is at the hospital, he doesn’t get his daily nap. Which he really needs. And this week, while home with my mom, he got sick. And I wasn’t there. Which broke my heart and his, too. I am sure he just doesn’t understand. Cannon gets sick and we take him away by himself. Townsend gets sick and neither Mark nor I are there or bother to come home. Tough for a 3 year old to comprehend. Apparently he just cried for me all day and begged to come to the hospital. And my mom told me that this morning, the first thing she heard over the monitor was,”Grandmommy, can we go to the hospital please?” I need to get home so my precious little boy can know how much we love them BOTH. It so often seems like its all about Cannon. But BOTH of my boys are awesome and I want them to feel equally loved.
Tonight, we are just feeling so so blessed! God heard our prayers and so far has fulfilled them beyond our wildest dreams! HE is so so good to us! I also have to sound like a broken record for a moment and thank all of you! You cannot possibly know how comforting it was to know that there were literally people all over the world praying while our son was in surgery! It is just so touching and we could not possibly come up with the words to express our true gratitude! We also want to acknowledge all of those who left comments here, sent emails, placed phone calls, come to visit, brought or sent gifts, and left positive Facebook comments. I am trying to respond with thanks but am a little overwhelmed with the enormity of the task and exhaustion at this present time. Please forgive me but know that we are so very very grateful for those who took time out of their days to encourage us! I always say it but it is always true…….we are blessed beyond measure! MUCH LOVE TO ALL!