My afternoon scare

I had just gotten back with Logan from our field trip today and after settling both boys down, lay down on the couch to relax for a few and catch up with my Dad on how the day went.

Soon, from the living room around the corner, we heard Callum call my name. Mom, can you come here?

I walked into the living room and there stood Callum, smiling very proudly at me.

Look Mom! I took it off all by myself!

He was showing me the dressing for his port, which was half removed and dangling from his chest.

The needle still looked in tact and in his chest, and he didn't seem to be in any pain. However, the whole point of keeping the dressing on is to protect the port from any potential dirt or infection, while a needle is in and the port is "accessed".

So yeah. Seeing that, I jumped into a bit of a panic.

Oh my God what have you done!

And immediately moved him to the table, set him down in a chair, put a mask on him and tried my best to cover the dressing, tubing, and all, with some press and seal as a cover.

Meanwhile, I grabbed the phone to immediately call the clinic. And by then, Callum had broken into hysterics, so my Dad was trying to calm him down while I tried listening to the menu tree to know which number would get me to the on call nurse the fastest. Ugh.

I left a voice mail explaining what had happened and then sat with a sobbing Callum in my lap, for the call back with further instruction. He still wasn't in any pain, but he knew the press and seal meant a visit to the doctors would follow - so between that and my panic "oh fuck" mode - I think I had scared him a bit. Luckily, he seemed to calm down and even almost drift into a nap on my lap, while we waited.

The nurse called us back pretty quick - and once we discussed why his port was accessed at home (he had chemo on Monday and we decided to leave it accessed since we had lab draws to do tomorrow), she said to me, ok Mom, I'm going to walk you through removing the needle.

I was afraid of that.

It really wasn't so bad, just the whole ordeal in general was unsettling. Thankfully my Dad was there to hold Callum (down) while I got us all masks, scrubbed my hands and donned some gloves. Then with a little instruction (and remembering what I'd seen nurses do before), I pulled the bigass needle out of my kid's chest.

Callum was crying the entire time - but mostly again just scared than anything. And I think he still thought we'd have to go to the hospital. So when he realized I pulled the needle out and that meant we didn't have to go anywhere, he was back to his usual self again pretty quickly.

Here's an after shot I quickly took of our mess on the table when it was all done. You can see the wad of adhesive (dressing) under the needle sticking up in the middle. Luckily we have a sharps container, so after a little show and tell to the boys so they could see it up close and personal, we dropped the needle in our container, slapped a bandaid on Callum's chest, and resumed our task for the evening (very important -making Popsicles). :)

Phew!

We survived!

It was crazy hot and now I need a nap. ;-) But, we had a lot of fun.

Pray for me

I'm assigned to Logan (of course) and one of the most hyper crazy kids I've ever seen. :)

The tough part is he tends to run off without a moment's notice. But the nice thing about it is that he's getting Logan out of his shell a bit more. :)

Bus ride!

My two kids for the day. They are BEYOND excited about the field trip today. ;-)

Just another day

I meant to blog a proper post on how Monday's vincristine administration went, with a few fun pics, but after we waited (FOREVER) for a simple 1 minute dose, we were pretty spent.  We also picked up Logan from school for the first time (Paul had been taking care of logan drop offs and pick ups while staying with us, but he had to return back home for work a couple of weeks ago. I got a few Mama friends to help out on pick ups after school last week but decided I'd try juggling it on my own this week!)  And, it was a scorcher outside.

So, all that meant that by the time we finally got home, we three just wanted to rest and relax and not think much about doctors or nurses or blogging or homework or anything else.  ;-)   (actually, we truly skipped homework!  Logan has been having a rough time the last couple of days with either some growing pains or a pulled muscle in his leg, so I gave him a night off on Monday while he laid up on the couch icing his leg).

Callum was actually in a great mood for most of the time we were at the hospital and SUPER goofy while we waited for the nurses to examine him and administer his chemo.  He was really interested in his port and how they accessed it, but because of how high it is on his chest, he couldn't actually see it.  So, I gave him my phone, on camera mode, so he could see himself in the picture.

He thought this was pretty cool but more than anything, he was jazzed that he could take a hundred (or more) selfies.  I posted a quick screenshot of those, when I got home later and discovered just how many he had clicked :)  but I pulled out one that was one of my favorites - a genuine happy smile from our little guy.

This really was him most of the visit (save for accessing his port where he was a screaming traumatized mess).  He was all smiles and dance moves and jiggly butt anytime the nurse walked in (which embarrassed the heck out of her).  Ha!  Here is a shot of him in action, dancing to something on the TV in front of him....

And then when it was FINALLY time to administer chemo, he insisted on helped her push it in (he didn't actually help with the chemo, but this is him helping flush his line after it was done).

Other news: Callum just finished up his 7 day stint of steroids (and a few other drugs), so Monday morning was back to our relaxed "very little" drug routine - yipppeee!!  We are both enjoying these breaks quite a bit.  ;-)

Besides the hospital visits, we tend to spend our days hanging out at the house doing chores and odd tasks I've had on my to-do list forever.  :)  I've also started trying to work out a bit again (I'm hoping it'll help with my back), so I take a short break from Callum and hit the elliptical machine in the garage each morning.

Lately, I've also been spending a lot of time on the phone dealing with (buffoons regarding) medical related topics.  Monday it was all about rescheduling our appointment later this week.  Man oh MAN do I like our doctors, but I can't STAND the schedulers!!  :(

Anyway, we had a lab draw appointment for this Thursday, to check Callum's blood work for next Monday's hospital admission (remember, we have to make counts each time prior to admission).  However, Thursday is also a field trip day for Logan that I've signed up as chaperone.  Originally, Jon was going to stay home to hang out with Callum and take him to his appointment, but his work schedule got turned upside down and he now has a Thursday morning meeting on calendar that he couldn't get out of.  Ugh.  :(

So, I called the clinic to reschedule the lab visit to Friday, which they weren't sure they could do - I told them I was sure we could do it, but if they really felt the need then to call my doctor ASAP to confirm and call me back ASAP to get the new appointment on schedule because I've gotta juggle who is going to watch who, and when (hellllloooo people, we still do actually have lives other than hospital visits to manage).  :/  

Aaaand, no call back from them meant I sent a very direct email to my doctor (who replied almost immediately, yeah no problem, move it to Friday) and then a call back to the clinic to say MOVE IT.

Yesterday, I had a similar phone tag marathon, but this time with the pharmacies.  We're running low on Miralax, which we have to give Callum daily, so I asked Stanford to transfer the prescription to our local pharmacy at CVS (easier for us to pick up).  They said "Oh, CVS has to call us and request a transfer."  I said hmmm, that's not entirely true - you've transferred for me before.  Well, that must've been an issue that we were helping you deal with (it was).  Annoying, but ok fine.

So I called CVS and asked them to call Stanford to transfer the prescription to them and then fill it for me.  Sure no problem, they said.  A few hours later, they called me back, to let me know that our insurance doesn't cover it.

I said hmmm, that's not true - I filled it at Stanford and insurance covered it.  Are you sure?

Yes, sorry.

Ok, fine, maybe there's something weird about the insurance covering at Stanford but not at CVS.  Since I don't need it immediately, I'll just have Stanford fill it and pick it up the next time we're there.

Ok, but you'll need Stanford to call us to transfer it back.

OMFG.  Fine.

So I called Stanford, who said well that's weird, insurance should've covered it since they covered it for us.

I said yep, I agree, but I'm not paying out of pocket if we know it's covered through you guys so please take it back and fill it and I'll pick it up later this week when I'm back at the clinic.

Oh, sorry ma'am, we can't.  Now that we've transferred the prescription out, you'll need to call your doctor and have them write a new prescription for us to fill.

ARE YOU FUCKING KIDDING ME?!?

So I said no, that's stupid.  It's a good prescription with a few refills left that YOU HAD LESS THAN 24 HOURS AGO.  I don't care who you need to talk to, BUT FIGURE THIS SHIT OUT.

She puts me on hold, then comes back and says ok, we'll call CVS and transfer it back later today after the pharmacists return from lunch.

I can't believe how idiotic the bureaucratic bullshit is that we have to deal with, and further, I'm sure most people don't question or push back, so how even MORE awful for them to have to deal with these constant runarounds.  :(

BUT.  Here's the topping on the cake for this story.  A couple of hours later, CVS calls me again, to let me know they talked to Stanford, sorted out the insurance coverage, and they've got our prescription ready for pick up.

Awesome, right?

A serious boy and his donut

We were supposed to lay low today. We were both tired from yesterday (even tho everything went well with his chemo administration it was still a long and tiring day at the hospital filled with a lot of waiting). And to make matters worse, I woke up just feeling crappy. Crampy with bad back aches and a headache. No bueno.

Then Callum got it in his head that he wanted "cheese crackers" which is a very specific type of cracker - Trader Joe's Gorgonzola cracker (I think it's funny my 4 year old has already developed a sophisticated taste for Gorgonzola! Haha!!) - so that meant a trip to the store!

Which was fine because it got us out for a bit. And then I also got my coffee fix in while he got his donut fix in. A win-win! ;-)

The digital age

Callum took 166 selfies while getting chemo today. It was either that, or listen to him whine about wanting a hot dog when we got home. ;-)