Man, today was a crazy stress day.
After Monday's surgery cancellation, Nurse Carly asked me to keep an eye on Callum's cough. If it improved any, I was to give her a call either Tuesday afternoon or Wednesday morning. Yesterday, the cough was still there but it was definitely less frequent and by the afternoon it was sounding much better. So, I left Carly a message to call me this morning.
First thing this morning, she called me and we discussed. He still had a cough but it was definitely less frequent and less aggressive overall. But, it was still a cough. :( She said she'd give surgery a call to see what the schedule was like for the next two days and would call me back. She called me back, about 8:30am, and let me know that miraculously, they had a cancellation on tomorrow's schedule. The scheduler still needed to check with the anesthesiologist for approval to put Callum on the list, but once approved, the scheduler would then give me a call with a time and instructions. Carly asked me to call her back once I had a time booked. Since, if we WERE booked successfully for tomorrow, she wanted me to bring Callum in for a quick exam today, to make sure she was happy with how his cough and lungs were sounding.
10:30am or so rolled around and I still hadn't heard from the surgery center (this has become par for the course by the way. While the medical team at the hospital have all been fantastic, the schedulers leave something to be desired - which of course, KILLS me, since I'm generally correcting them, during every call I receive!), so I sent Carly an email to let her know. She called me back around 11am - the schedulers still hadn't heard from the anesthesiologist team and couldn't proceed without their approval.
Carly talked to me again about his cough - she was worried about calling us all the way in, to have the surgery center call it off, since the surgery is technically elective and they won't want to take any big chances. So, she called the anesthesiologist directly to discuss - who, after hearing Callum's case, said to go ahead and call us in, but that she'd like to examine Callum too. Carly called me back (this time it was about 11:30am) and asked how quickly I could get to the clinic…. I started packing a few snacks and off we went.
At the hospital, Carly met with us first, to examine Callum. His cough was pretty wet and crappy sounding OF COURSE. She wanted to set my expectations that they'd probably not go for it, but to see what the doctors said for themselves. At the same time, she did acknowledge it was better than Monday and was hopeful they'd give us a pass since we'd all like to get rid of the PICC and just move on. While the port has some drawbacks to it (it can be painful for little Callum anytime they access the line to draw blood or administer drugs), it'll be MUCH better for all of us.
The anesthesiologist came in next, and of course, then Callum wouldn't cough at all! In fact, we begged him several times (he finally gave a weak little cough so she could hear), but instead he just wanted to play on the exam table, crawling all over me and my back and using me as a jungle gym while I tried to have a serious conversation with the doctor. After she drilled me with several questions (Has he had a fever? No. Has he had a runny nose? No. Does his cough wake him up or keep him up during the night? No.), she finally said ok, I'm going to allow him through for surgery.
Instead of being relieved at the news, I got a bit nervous - You will? How come? You haven't even heard his cough! Are you sure? LOL. Yeesh. I'm such a pain.
So she reassured me saying look - he's clearly feeling fine (as he was giggling and laughing up a storm, crawling all over me), and the main things we're concerned about are the cough accompanied with everything else (fever, runny nose, waking up at night) which he doesn't have. And, I think you should get the port in this week before you start your next round of chemo next week, so I'm going to approve it.
And with that, she picked up her phone, called the scheduling folks and gave them her ok. They told her they'd place Callum on the schedule tomorrow (with another anesthesiologist), which she then relayed to me. She said not to worry, she'd speak directly with her colleague, the other anesthesiologist who'd see us tomorrow, to let her know Callum has a cough but that she approved the surgery anyway. Good, because the last thing I wanted was to come in again and have a different doctor cancel on us again.
Other than not really wanting to talk to the anesthesiologist or cough for her, Callum actually behaved really well at the clinic today. He was super patient and well behaved, and chatty and giggly the entire ride home. Since he was in such a great mood, I suggested we take a detour before home and head to Costco to pick up a few snacks for the house. We had a great time out together, outside the house or hospital. :)
Later in the afternoon, I got a call from the surgery center about our time slot for tomorrow. The gal said our checkin was for 1:40pm, with a surgery time scheduled for 3:10pm.
I almost lost it. Wait, did you say 1:40 - in the afternoon? and 3:10 - as in, the afternoon?
Uhhh. Do you realize my son is 4 years old?
And you want him to fast for what is that, like 15 hours?
I'm afraid so.
That's insane. Maybe you don't realize it, but my son has been on a pretty aggressive steroid schedule and just got off it. To ask him not to eat between midnight and THREE IN THE AFTERNOON is like asking me to torture my child!
I'm sorry - they prioritize all the cases for each day by age.
So, you're teling me there's AN ENTIRE MORNING of kids younger than age 4, scheduled tomorrow?
I guess so. (Although I don't think she really knew)
And on and on this conversation went. Meanwhile, I was getting more and more worked up by the minute.
Is there ANYTHING you can do here? Who can I talk to about this?
So, she transferred me to another poor fellow who had similar non-helpful answers. After I beat him up for a bit, I finally told him I was going to need some better guidance to handle this. So, he transferred me to an actual anesthesiologist.
She was a tad more sympathetic, thank goodness, but she couldn't change the schedule for me, which is what I was really hoping for. She offered a few ideas that the others hadn't - said we could feed him jello or juice popsicles in the morning until 10am (and clear liquids until noon). And perhaps consider waking him up about midnight to give him a snack then too.
I explained we have to give him chemo every night on an empty stomach before bedtime, so this fasting business was a lot worse for us, since it was going to be more like 18 hours when calculating the time we give him his chemo at night. She said we should consult with our Oncologist but hopefully we could still give him something a few hours after that dose (by waking him up).
I hung up pretty dejected, frustrated, and in tears. :( I'm sure the breakdown had more to do with stress just building up over the last few weeks, rather than the idea of fasting for a long time overnight, but whatever, it definitely was a breaking point for me.
Carly happened to call just as I hung up with the anesthesiologist, so I was still pretty shaky. After a few minutes she stopped talking and said, "Are you…. Oh my gosh Bree, are you ok?" I guess she hadn't quite realized I was barely holding it together when she had called and finally noticed the quiver in my voice. She was surprised, more than anything, since I guess I haven't really cried, or lost it, in front of her before.
At any rate, she did the best thing I could have asked for in the situation - she said hold on, let me check something, and called me back a few minutes later.
She arranged a bed for Callum in the day hospital for tomorrow morning - she said we obviously still couldn't feed him, but we could hook him up to fluids to help take the edge off, and she'd be willing to hang out with him or have other nurses stay with him if I needed a break or needed to grab some lunch or something. And, if a miracle happened and we got bumped to an earlier surgery time, then we'd already be there and set to go. And, if we're doing ok at home and don't want to come in that early, then we wouldn't have to.
It was the SWEETEST thing anyone could have done for me at that moment and I was super thankful. I apologized for losing my composure with her earlier and thanked her for everything.
I don't know if it'll help Callum much, but just knowing we have that option if we need it tomorrow, helped me get a handle on things.
Meanwhile, dinner with Callum was a bit of a flop tonight. He ate a bit, but then decided about 6:30pm that he wasn't hungry and wanted to go to bed. ACK!! After all this back and forth of timing and meds and eating, and he wanted to go to bed EARLY?!?!
So, I just went with it. (Really, what else can you do?) I put him to sleep but warned him I'd have to wake him up in a little bit to give him his nighttime medicine. He nodded half asleep and then passed out, poor thing. I wonder if today was a lot of activity for him too.
At 8:30pm, I woke him out of a dead sleep, to give him his pill. He was NOT happy with me about that and of course, hated me further as I tried to get him to drink and swish water in his mouth to get it all down (since he's chewing the tablets, half of the meds get stuck in his teeth, which works a bit against us!). Ugh.
I finally decided he had gotten enough of it down to call it a night and let him snuggle back into bed. He woke up about 9:30pm and decided to join us in the den for some juice and TV. :) This is actually not too bad!! Since, I can now give him a little snack before he goes back to bed (without having to wake him), and MAYBE, given how late it now is, he'll sleep in a bit later than usual for us tomorrow morning.
A MAMA CAN HOPE!