Cannon’s surgery day went relatively smoothly. After dropping off Townsend at a friend’s house, we drove to the hospital and arrived on time. In route, I gave Cannon the social story I had written to explain what was going to happen. It went a little something like this…..
We decided to tell him the button was “broken.” He understands broken for sure…….because of his toys getting broken sometimes. But I am not positive he understands new vs. old. (Meaning…..that his current button was old and needed to be replaced with a new one) And we really wanted him to understand why this had to happen and accept the procedure…..so we played it safe. You may also notice that we call it his “Mickey Button.” Last May, he had his first surgery and because we were not sure if he would accept the button and/or pull it out……we used (rigged) a different button. One called a Mic-Key which are designed to be used with feeding tubes. Since they are often used on babies…..they are made to not do tremendous harm if pulled out. Under the skin is a small balloon of water which pops as it exits. The button designed for Cannon’s condition is called the Chait Button. But since it is anchored in the intestines by a spiral shaped tube and can do tremendous damage on the way out……we did not start there. In July of last year, once we knew he wouldn’t bother it, we decided to swap and go with the Chait. But we still call it the Mickey Button. Because he relates it to Mickey Mouse, likes that, and its easier. Anyways….when I gave him the story, he took it, read it intently while mouthing some of the words, handed it back to me, and went back to reading his book. Calm and cool. Social stories are amazing! 🙂
When we got to the hospital, he was a little nervous in the surgery waiting area. And this is what he does when he feels that way. To hide, shut us all out, and calm himself…….
We consulted with both the Interventional Radiologist and Anesthesia. Over time, we have figured out the most humane way to get Cannon to sleep is to do it quickly and without the trauma of putting in an I.V. while he’s awake. I carry him into the Operating Room, sit in a chair, the Anesthesiologist comes up behind me and puts the mask of the gas over his face. I give him lots of cuddles and reassure him that all is going to be ok. Within 30 seconds, he is out cold. THEN, they take his clothes off, get an I.V. in, and begin the procedure. It’s better for everyone this way and I am so thankful that the docs are willing to change things up and do what is best for MY child and not what’s protocol. The Hospitalists have always called Cannon “The Anti-Protocol,” for many reasons. And it is so true!
After they got him down and I helped them remove his clothes, we were banished to the Waiting Room. To wait for the next hour. The Anesthesiologist popped his head out and told us that things went well and a nurse brought us back to the PACU. They always come and get us immediately when he gets back there and don’t wait until he wakes up. They have learned the hard way on that one and I am afraid he has a bit of a reputation.
When we arrived we noticed he looked like a pin cushion with multiple needle stick marks on each hand and on the inside bend of his elbows. Along with not 1 but 2 I.V.’s. The Anesthesiology Resident explained that they had had a terrible time getting a vein. That he has tremendous scarring on his veins. So both the Anesthesiologist and Resident were working on either side of him to try to get one. They each did and at exactly the same time. Hence, the 2 I.V.’s. They apologized quite a bit for that. Cannon was scheduled to get a port last year about a week before his first button surgery. Because he had no more veins left. But, they canceled the surgery at the last minute because they hoped he wouldn’t need it after the button surgery. And wouldn’t require frequent hospitalization and labs. Cannon also had a lot of irritation on his skin from various placements of tape. Particularly on his face where they had to tape his eyes shut to prevent a corneal abrasion, and also his chest and arms.
The only other issue was that his resting heart rate was really low while he was asleep. The nurse gave him a decent amount of oxygen and just watched him a little longer to be sure he was ok. When he woke up, he was very reflux-y, heaving heavily, and flirting with getting sick quite a bit. He was extremely hungry and thirsty as well so it was hard to get him to eat and drink slowly so he wouldn’t throw up.
But overall, he did great and the actual tube placement went excellent. The Interventional Radiologist said that “the pathway was well formed” and the removal of the old button and placement of the new one turned out to be very simple. THANK THE LORD! And all of you for your prayers! After getting over a lot of the grogginess, resting, and showing the doctor and nurses that he could eat and drink without getting sick…….we were discharged!
We did decide to make a quick trip up to the floor of the hospital which was a second home to us for quite a while. To say hi to some of the nurses and PCT’s. And to stop by Child Life for some Beads of Courage. I had figured out how many he was owed for various procedures, tests, pokes, dressing changes, flushes, etc. And it was an outrageous number. So, Lauren, the fabulous Child Life Specialist, and I decided a couple of things. 1) We would use “100 beads” for some of the categories. Like he was due to get almost 400 grey beads which are for dressing changes since our last collection in mid-November. So, instead of actually giving me that many individual beads, Lauren gave me 1 grey bead to put on his strand….along with 4 separate and larger “100 beads” to place after. And the same was true for the nearly 200 purple beads that would represent his flushes. 1 purple bead and 2 “100 beads.” 2) I also made an executive decision. Cannon has accumulated hundreds and hundreds of beads to date. And gets 3 a day on a good day. I decided this was a good time to get his “end of treatment bead” and save some beads for the other kiddos who deserve them. This is Lauren presenting Cannon with that very special bead!
Thank you Beads of Courage for blessing Cannon with such an amazing way to tell of his journey. And thank you to all of our incredible prayer warriors for praying him through his surgery! His is doing mostly ok. Doesn’t seem to be in too much pain. He was up most of last night and couldn’t keep anything down for about half of the day today. But things got better in the afternoon and he was able to eat about 2/3 of his dinner. And he has all of his normal energy back! Thank y’all for checking in on our little man and God bless each and every one of you!