It seems like a good time to write. Christian is finally sleeping. My kitchen is clean. My house smells like a Fabuloso factory. Which conveniently gives the illusion of a very clean home. Apparently when I’m mad, I clean. I really should get mad more often.
Why am I mad? Because after the last few days, I am convinced our healthcare system is completely broken. You already read how his pre-op appointment went so I guess it should be of no surprise how the day of surgery went. I’ll start at the beginning.
Day before surgery I received a call from the surgeon’s scheduler that someone had canceled and to arrive earlier than planned. The new time was to arrive at 7:30am for a 9:30am surgery. Ok great, the earlier the better. Let’s get this party started.
Day of surgery we arrive promptly at 7:30 and get checked into the hospital. We are taken to a holding room where they do the typical things- go over meds, start the iv, etc. Myself, my Mom and Christian’s girlfriend were all accompanying him. Then my husband arrived. And with a cooler of drinks! We were so thirsty and getting restless in the tiny room. Hours had passed and no one had even popped their head in to see if Christian needed anything or to give an update of any kind. Christian is typically in isolation and this time was no different. That means that every time you enter or leave the room, you have to dress yourself in a plastic gown, gloves and sometimes a mask. So leaving and coming back often is a real pain in the butt. We could hear the party at the nurses station and quite frankly, after hours of waiting, it pissed me off. I disrobed and headed down the hall. You see, we had already been told by 2 different people that Christian’s doctor had an emergency surgery that morning but that he was next on the schedule. The surgeon even came in and spoke to us and gave the impression that C would going back shortly. 3 hours after that, it was obvious that was not the case. We didn’t want to leave C because we had no idea what the plan was and apparently neither did anyone else. Oh they also reminded us that we did come exceptionally early for a 12:30 surgery. Ummm. I had to tell them that they called us about a cancellation. No one was aware. Well of course they weren’t.
So I get to the station and all the laughing ceases. Must’ve been the pleasant smile on my lips. The conversation went something like this, “We’ve been waiting 7 hours. None of you has even checked on him or given us an update. Somebody better find out what the hell is going on and you’d better do it quick. I’m done being on your schedule and I’m done assuming any of you are going to do your jobs without being told.” Now that may seem harsh, but guess what happened next? Yep, they came within 20 minutes and took him into surgery. I’m just mad I didn’t get bitchy sooner. Lesson learned.
The ride to the OR was fine. As long as you didn’t really want those anxiety meds before surgery, want to speak with the anesthesiologist or get any final questions answered. Talk about sending your kid off on a wing and a prayer.
It wasn’t long after that the surgeon showed up in the waiting area. I thought surgery was 3 hours?? He says nah only about 1.5 hours. I just sigh to myself and think just get to the part that actually matters. He says it all went really well and he was able to clean out all the sinuses and repair his septum. Which he says will be the most painful part of his recovery.
My Mom and I go back to see him once he’s moved to recovery. Ohhh there’s my sweet guy. Being kind to every person who’s bustling around him. They came in to remove his packing. That’s something I’d be fine to never have to witness again. I cringe just remembering. He never ceases to amaze me. I mean, this kid simply does not complain. How is that even possible? So, when he does- I know it’s serious. We all begin to take turns visiting Christian. I begin to feel a weight lifted. When I go in for round 2, he asks if there’s a tv. There is and he wants to watch The Lightening play. He asks if Kaitlyn can come in and watch with him. I say of course but the selfish part of me wants to stomp my feet and say No! I get to stay! Like I’ve said before, it’s a transition for all of us and I’m doing my best. As I go to leave he stops me, quickly says he doesn’t feel well and I recognize the look on his face. His nurse isn’t as quick and I grab what must have been the biggest garbage can in the room and literally hold it up to his head so he doesn’t have to bend over. He begins to vomit and it’s all blood. That is always so disturbing. Bless his heart. Can you imagine having to vomit violently after just having everything up your nose worked on? It broke my heart. They had him on oxygen because he couldn’t keep his o2 levels up. Dipping as low as 79% at one point. He kept ‘forgetting’ to breathe. The anesthesia combined with the CF makes for a potentially dangerous combo.
He just wasn’t doing well enough to go home. So they decided to keep him overnight to get those levels up. As soon as he got to his new room, more vomiting. He had a guy that was with him from transport that was about his age. He was so kind and really helpful to Christian. I really wish I had got his name. He and his new nurse Jessica, were the saving grace of the day. Jessica ‘got it’. Thank God. I pitied the soul that may have crossed my path at 11pm that didn’t ‘get it’. After discussing it with Christian, I decided to leave. His girlfriend wanted to stay and he wanted her to stay. I was going to stay as well but after a call to my voice of reason (my amazing husband), I left him to be a grown up- after I got Jessica’s personal cell of course. That was one of the hardest parenting moments of my life. Kaitlyn thanked me for trusting her. I realized in that moment that was what I had to do, trust that other people could also help care for Christian.
Mom and I went back to get him and Kaitlyn in the morning. They said the night had gone well. I had made the right decision whew. I had 3 prescriptions transferred to a different pharmacy than the one that they got called into. Doesn’t matter why. What does matter is that the pharm tech at CVS in Brandon is lucky I didn’t have a fucking sledgehammer and come at her through her window. I swear to you, what provokes people to just be nasty out of the gate? I was in no mood. So anyway, they had screwed up the scripts. Just par for the course I felt at that point. So I got his pain meds (which they had) called Terry to please go to the other pharmacy and get his 2 other scripts and we headed home. After being on his pain meds for about 24 hours, Christian and I both decided that they were not strong enough. Let’s not even go into the fact that they aren’t the drug that was discussed being sent home. I told Christian, we will just call the on call surgeon and get something stronger. I’m gonna make this part short because if I dwell on it too long, I become enraged all over again. On call doctor calls and apparently it’s policy to not prescribe narcotics on the weekend….what. the. fuck.
They were lovely enough to suggest he go to the ER but that it was Gasparilla so good luck with getting to TGH. OMIGOD just make this madness stop. Yes Dr., I think it’s a brilliant idea to take cf’er to a flu infested ER when all he needs is for you to do your job and call in the med you said you were originally prescribing anyway. So after a shower, a heating pad and extensive internet searching to get my own damn doctorate- Christian is finally resting.
My friends have us well fed and what a relief that is. I told one of them that I had no idea how nice that would be to not have to think about what to feed anyone. Thank you for all your prayers and well wishes. Thank you for letting me vent as well. It is therapeutic for me.
Oh and my internet mermaid hair came. Finally. I hope mermaids are still in style.
take 2 and call me in the morning,