The last 2 weeks have been a complete whirlwind. Eddie had his eye exam scheduled for Wednesday, October 1st. We packed up our bags, Michael took a half a day from work, and we drove 7 hours home to my parents house in Doylestown. On the way home, I received a phone call from Will's Eye telling us that Edward's arrival time was 8:00 a.m. Woohoo. Not bad. We set our alarms for 5:15 a.m. and snuck around the house (me, my Mom, Mike, and my Dad) trying to get showered and dressed without waking up Eddie, but we never succeed. He ALWAYS wakes up! He was in good spirits that morning compared to last time when he had a complete meltdown. He asked, "Where are we going?" as we were driving into the city, and Michael replied, "We are going to see Dr. Shields. She is going to check your eyes." He quickly responded, "But my eyes are fine." We kept the conversation short, but he quickly became very quiet and didn't talk for the rest of our drive. I felt terrible. I knew he was getting scared. We arrived at 8:00 a.m. but Edward was not taken back into the OR until 11:00a.m. Kinda the usual. We played and played, my mom took him for walks around the halls, he watched some DVD's we packed, we brought a bag of toys, and he enjoyed having Daddy there with us this time. But when they called his name, he stopped playing and smiling and curled into Mike's arms and said, "No Daddy I don't want to go."
Sigh.....
Back in the pre-op room we ran into a few challenges... First, the eye drops. Last time Edward quietly laid down and pretty much allowed the nurse to put three sets of drops into his eyes without a fuss. This time it took BOTH me and Mike to hold him down (which we weren't very good at doing) while he kicked and screamed at the top of his lungs.... where did that come from?? I don't know.... As we approached the 2nd set of three drops I tried to talk to him to calm him down as he started crying again and I said "Edward, it's okay, buddy, it's just eye drops, it's not going to hurt you." And the nurse butted in and said, "Oh no, hun, these are numbing drops, they hurt!" NO SHIT SHERLOCK. I was lying. I was trying to calm him down before you blabbed your mouth. UGH........ And the kicking and screaming continued....
He refused to put the hospital gown on. He kept saying, "I don't like that. I won't wear it." Mike and I offered all sorts of incentives. We even draped it over his shoulders while he watched a video on the ipad, and when he noticed it was on him, he ripped it off and threw it on the ground... Okay then....he sat there for the next 20 minutes.... only wearing a pull-up.
Then, we signed off with the anesthia team, Dr. Shield's came in for her pre-op visit and he was NOT having it. She tried to put 2 dots on his forehead (like she always does ) designating that he is bilateral and that both eyes will be examined. Mike had to hold him while one of the nurses held his head straight so she could make the designations....
AND THEN, the nurse came back to give him the pre-med (basically the giggle juice) which is about 4-5 ml worth of nasty red stuff. It looks like tylenol, but Eddie knows that this stuff doesn't taste like tylenol. He could not be fooled. I held the syringe in my hand and tried to talk to him, but he wouldn't let me put it in his mouth. He actively swatted my hand away, almost knocking it out of my hand. The nurse (same one from the eye drops) came in and said, "Let's lay him down." She laid him back as he was kicking and screaming she squirted the whole syringe in his mouth...... and guess what happened..... he choked, and gagged, and gagged, and gagged, and threw it all up in Mike's hands...... AWESOME. Anesthesia came to take him back to the OR and he wasn't loopy at all. Instead he was fully alert, clinging to my neck, screaming and crying, and screaming and crying. They tried to pry his little hands from around my neck, but his hands were so strong. The anesthesiologist joked that he was going to have to carry Mom with him. Ahhh, this was the worst. I cried as walked back out in to the waiting room and I told my Mom the whole scenario. He was angry. He is bigger. He is stronger. He is smarter. He is older. This is definitely hard on him.
We waited and waited, not for too long, but then we heard "Edward Johnson" and we jumped to our feet. They brought me and Mike back to a de-briefing room, where a student/fellow under Shields placed drawings of his eyes on the table. YES, everything looked the same. No Dr. Shields didn't come into the room yet, but I peeked while the student left the room :) Dr. Shields said things are looking great! Completely the same. No Activity. No Seeds. She said. "Do not treat him like he has a disability. Does he have limited vision in his left eye? Yes, absolutely, but he is looking good. He can play sports, whatever he chooses as long as he wears protective glasses."
AHHHHH What a relief! We shook her hand, thanked her, and told her, that's great news, because we are off to Disney World for Eddie's Make-A-Wish trip. She was excited for us and wished us well on our trip.
We went back to where his bed was, as he was waking up..... ugh.... did I say he was angry???? SCREAMING. I was that Mom that was like, "oh my God is that my kid screaming like a lunatic?" Yep, my kid. The nurse quickly put me in a chair and handed me the very drugged and belligerent toddler who was suddenly too big and too heavy for me to hold him safely! He was flopping about, thrashing himself this way and that way screaming, "I want to leave! I want to go to Grammy's house!" He pretty much helped the nurse take out his IV, by ripping it out himself. Lovely. We tried our best to soothe him, to comfort him, to sweet talk him. NOPE. Kicking, screaming, hitting continued... He was out of control...... And then, as we were signing the discharge papers he yelled, " I hate this place! I want to kill it!" Ummmmmmmmm. a.w.k.w.a.r.d........... We waved goodbye to the nurses and we rushed down the hallway... Oh my goodness, did he just say that? Where did that come from? BYE, see you in 6 months!!!!!!!!!!!!!!!!!
In the car on the way home he kept yelling, "Why do my eyes hurt?" Poor guy..... just because he didn't have any treatment done, he was still poked and prodded and his eyes were incredibly sore and dilated as we drove home. Later that day, as the anesthesia wore off and our sweet boy returned he asked me, "Mom, why didn't you come with?" I told him I didn't know what he was talking about and he said, "Why didn't you come with me, Mom, into the back room?" I realized that he was talking about the OR. "Because Mommies and Daddies are not allowed in the back room." He kept asking why and I said, "Only the nice doctors and nurses are back there so they can help you and check your eyes." Then I asked him if they put the super cool mask on his face to breathe and he said, "Yeah, they did, but I knocked it off 4 times..." Ummmmm WHAT? "Yep I knocked it off like BAM!" Yep, that's what he said..... Oh my Lord. I bet he was an absolute JOY there. Yikes!
I am incredibly happy and relieved that the tumors are stable and that we now have another 6 month pass until he has to have another eye exam. But, I still hate this. I hate that he has to go through this. I hate that he is scared. I hate that his eyes hurt him. I hate all of this. In fact, I hate September. Why? Because it's pediatric cancer month. Why do I hate it? Because for many, many people, it's only a month!!!! But for me, it's every day. Instead of being out there raising awareness with a smile, posting things on fb for others to read, having this fundraiser, doing that, I am somehow frozen, immobile. I almost despise September now.... I don't know if I can explain it.... I feel like I am in a catch-22 everyday during this month. YES, Edward is doing great! He is thriving! In fact, he had an absolute ball in Walt Disney World! Pictures coming soon! I have soooooo many pictures!!!!!!! Too many, that I am having trouble uploading them all, but I promise, I will have them up soon!!!!!!!!!
XOXO
Katie
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