Monday, March 10, 2014

Day Number Six

We had another great night.  It was tough getting Callum to sleep again - not due to pain or anything, just general wide-eyed and bushy-tailed kid syndrome.  ;-)   I'm not sure why he's staying up so late but I can only believe being in the hospital has something to do with it.  Anyway, after another shift change, which means an update to vitals on Callum, I finally got him settled down enough to sleep (roughly midnight - ugh!).

He slept straight through until ~8am this morning when the "transport" stopped in to pick us up and take us to radiology.  I didn't have the same luxury of sleeping through the night - every little squirm or moan from him woke me up, not to mention the nurse visits and beeping machines that would alarm if he bent his arm just so.

So, I was a groggy mess when they came by (and woke us up).  We both were really - but as you can see from this pic, which we took sitting in a wheelchair outside of the X-ray room waiting our turn, my little guy is able to bounce to in minutes, whereas I look like I still need a cup of coffee or three.  ;-)

He did alright during the X-rays.  These were chest X-rays where he had to stand, chest pressed against the plate with his face sort of smashed to one side.  He wasn't particularly thrilled with it and for a minute I think both the tech and I were wondering whether this would really work.  But, I coached him through it, while I stood by him (and held his head so he wouldn't move).  He was in slightly better spirits after we were done and back up to our room.

But then we had the dreaded daily blood draw next.  Unfortunately, Callum isn't getting any more used to them.  In fact, I think he's worked himself up into a worse tizzy, each time.  The minute he saw the techs walk in, the minute he sees the rubber band tourniquet, the minute he sees the needle.  He can barely see straight - and you can see it in him as well.  He starts to just FREAK. OUT.  :(

Jon came by after he dropped off Logan at school.  It's been a lot easier on us during the school days, than on the weekend.  We don't have to worry about "juggling" poor Logan around or worrying about his exposure and keeping (one of) our visits short.  Instead, both Jon and I can spend time together, with Callum, at the hospital.

Callum (probably subconsciously) noticed this difference too - since he got very clingy to Daddy all of a sudden in the morning, and made Jon sit with him on the bed to play a game with him (usually something he has only reserved for me).  I chuckled, telling Jon it was his turn and I could get a little break to catch up on Sherlock (via Netflix).  Jon just groaned and teased me by asking Callum wouldn't he rather have Mommy help him?  Nope Daddy, I want you.

It's been amazing the outreach from family and friends during this time.  I've been so overwhelmed with staying by Callum's side and discussing a million details with the doctors, that I haven't spent as much time (other than this blog), keeping our network updated.  Jon has done a terrific job at keeping folks informed (especially family, of course) on our behalf.

Curtis, Jon's brother, wanted to send Callum a little "Get Well" package.  So, he texted Jon that it'd arrive in an hour or so - Jon thought WOW, that's fast!  I wonder how he found some place to deliver the same day?  I shrugged, maybe he used Google?

A bit later, just before lunchtime, Callum's "Get Well" package arrived - to our room!  He loved it - as you can see from his beaming smile.  :)

By about Noon, Jon headed out to grab us lunch, and shortly after, Dr. Abi-Hanna stopped by.  He asked to speak to me outside, in the hallway.  Never a great sign.

He talked me through today's lab work.  The numbers we've been watching did rise a bit - yay!!  But only a smidge - boo.  He walked me through the various conversations he had with the technicians and hematologists that were reviewing our son's blood.  They were all still a tad nervous about his numbers - since things like his lymphocytes were up, but his neutrophils were down.  This would explain a viral infection, or something else, but not the bacterial infection.

He said it's all pointing to a viral infection that will hopefully pass, with numbers continuing to trend up.  However, I want you to know, there is a very small possibility that we are also facing cancer.

I nodded.

He asked if I was ok.

I knew this was something that everyone had sort of been dancing around but no one wanted to come out and talk about.  I told him so - he nodded back.

We both agreed that it's been in everyone's hearts that Callum has just had a very peculiar reaction to some sort of infection, especially since this came all of a sudden without any warning signs previously.  And, the odds are definitely in our favor.

But, Dr. Abi-Hanna wanted me to be aware that after our follow up tests this week, if we see the trend reverse and numbers go back down, then we'd likely be sitting in front of a hematologist up at Stanford, running another blood draw or more likely, a bone marrow biopsy, with the objective to look for cancer.

He asked again, if I was going to be ok.

I nodded.

He didn't want us to be caught off guard, and I appreciated his directness.

But, my mind was reeling.

With that, his recommendation to the hospitalists was to discharge us so that we could get home, out of the hospital (which he felt was the worst place for Callum to be, with a compromised immune system).  Clinically, Callum has been behaving and looking fantastic.  He's slowly getting his appetite back, he's joyful and smiling and no longer complaining of any stomach pains or suffering from a fever.

I immediately texted Jon to come straight away.  It was hard for me not to fall apart in front of Callum and I was struggling to keep it together.

We were both in a bit of a daze for the next hour or two while we waited for the hospital doctor to drop by (since they're the ones that need to order the discharge).  Thankfully, Callum was completely unaware of everything being discussed around him.  At some point, our room phone rang and Jon answered it.  It was Dr. Safir calling to check in again, so Jon filled him in.

Good ol' Dr. Safir said not to let the scary stuff scare us.  The likelihood of Callum having cancer was extremely low (to non-existent).  He coached Jon to just tell the doctors to discharge us, write up a lab request for Wednesday morning, then come see him Wednesday afternoon.  He'd manage our case from here and if we needed to consult with a hematologist or anyone else, he'd do that for us.  And he kept reassuring Jon that we should think positively and not go straight to the worst case scenario.

One of the many reasons I like Dr. Safir - he really knows how to handle panicky crazy parents like ourselves and is able to quickly diffuse the situation and calm us down.

Jon left to pick up Logan from school and spend some time with him while I waited for the hospital doctor to stop by and discharge us.  While waiting, I got a surprise courtesy visit from Dr. Armstrong where he basically said not to jump to any conclusions and that everything would work out.

It felt a lot like Dr. Safir had called him (he does work with Dr. Armstrong so it wouldn't be unlikely).  ;-)

Then, Dr. Sadri (the pediatric hospitalist) stopped by.  It was the first that she's looked at our case or seen Callum so I wasn't expecting a lot from her.  She also mentioned she had spoken to Dr. Abi-Hanna, Dr. Armstrong and Dr. Safir.  She was going to put in the discharge paperwork for us and also write up the lab request for Wednesday.  She mentioned Dr. Safir would then see us that afternoon and take it from here.  I wondered if she would have preferred to refer me directly to the hematologist but her comment was Dr. Safir wanted to handle it and she said that made sense and was fair to do.  :)

She made another confusing comment at one point - that everything is still pointing to a viral infection and that the stool culture came back negative for E. Coli.  I said that the antigen had tested positive and those tests are rarely every wrong, given how sensitive they are.  So, I questioned which sample she was referring to, since we had done two and there was some mix up early on about whether the lab had run the right tests or not.  She didn't seem to be aware of that, or which sample it came back negative for, but it didn't quite add up for me.  She sort of shrugged it off and called it the "red herring" of our case.

I asked what I should then tell Callum's school - since I know they'll need to report an "exposure notice" to the rest of the parents at some point.  She said I should tell them he's had a viral infection.  Again, it didn't quite add up for me, but I decided to drop it and talk to Dr. Safir on it later.

Yet another layer of confusion to our crazy story I guess!

While waiting for the nurse to arrive with our discharge papers, poor Callum finally fell asleep.  And, while napping, a Public Health nurse called to interview me on everything.  We spoke for about 30 minutes and covered most of the legwork but will have to continue the conversation tomorrow.  I talked to her about the confusion on whether he ever really had E. Coli or not, based on my conversation just a bit earlier.  The nurse said that's something they'll determine, and through their own lab work, they'll then decide how to communicate to his school for us.  She said she'd discuss the confusion of the two samples with her team and get back to me tomorrow on whether we'd need to collect any more samples or not.  *sigh*

The big takeaway from my conversation with her, however, was that Callum would not be allowed to return to school until she clears us.  I hadn't planned on taking him back until at least we saw Dr. Safir for our follow up on Wednesday, and assuming that went well, maybe he could return.  But, based on my discussion with the Public Health nurse, I'm guessing he won't return at all this week (which I'm also totally okay with - neither Jon nor I want to rush him back).

I was super eager to get home.  I packed up the room and loaded up the car, waiting for Callum to wake from his nap.

Of course, he took a super duper long 2.5 hour nap!  When he finally woke up, he was pretty groggy, so it took some convincing that we needed to get dressed and head home.

The last thing on our to-do list before getting out of there was to remove his IV.  I can't describe how painful it was for me to hold my baby with three nurses working on removing the tape and delicately pulling out his IV, all while he was SCREAMING at the top of his lungs.


It was terribly traumatic and awful and left him crying, scrunched up in a ball on the bed, desperately clinging to my hand and arm and holding on tight.

That's my arm he's hugging.  :(

He was in such an upset state that it probably took another 20 minutes for me to calm him down and slowly ease him back into the idea of going home.  Thankfully, once I broke through, he was willing to get his clothes on and (with me carrying him), head outside and drive home.

It was so amazing - and surreal! - to finally be home.  I think I was the happiest of anyone.  :)  I immediately unpacked our bags, started some laundry and hung out with each of the boys.  We got home pretty late, so soon after, it was time for Logan to go to bed.

Since we haven't had much time together, I went to lay down in bed with him for a bit so we could talk and cuddle.  He grabbed a hold of me and said,

"I want to hold you in my arms forever.  And never let go."

You and me both, kiddo.  You and me both.

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