I guess I forgot to post this one when it was written. Oops. It is two weeks later now, cultures remained clear, and we are booger free, vomit free, and fever free for two weeks now. We unenrolled Daniel from preschool and have kept him and us on pretty strict contact precautions, limiting contact with the outside world, for about a month now, and it has paid off in us all getting well again. Just in the last week, we've started getting out again, mostly outside public spaces like skiing with the occasional trip into the ski lodge for bathroom breaks, or swimming in Keystone's heated outdoor pools (that we wait until late in the evening to poach so we don't get busted.) On other fronts, Bobby is feeling much better after his voluntary mangling, the weather has turned warm and created cement-like 6 foot snowbanks and delightful muddy puddles to replace the deep, fluffy powder we started this season with. Not that the kids mind. They are both starting to learn how to ski, so less powder to pull their skis around and more sunshine to keep them warm is perfect.
So here is that outdated update. Sorry 'bout that.
***
On Thursday, my beloved husband did something that means the world to me- because he loves me, he spared me a medical procedure ensuring permanent birth control that, had I had it done, would have meant much higher risks, invasive internal trauma, and a much longer, more painful recovery. As it was, it wasn't exactly a walk in the park for him either, and he spent most of the day informing me he had decided he did not love me after all, and micromanaging my driving to ensure the smoothest ride possible for him, since we had to drive two hours to have it done, then two hours back home, and he wasn't allowed to drive afterward. Because the appointment was late in the day in Fort Collins, he did not want to get caught in rush hour traffic on I-25 or in Denver, so instead of picking up ice packs or pain meds, we hit the road for home immediately. This turned out to be a good decision as we watched the roads we had just traveled turn red behind us on our traffic flow apps, but not such a good decision as far as pain management was concerned.
Once we got home, he cautiously lowered himself into a recliner and allowed Daniel to creep onto his lap for an evening of de-stressing while watching "Cat in the Hat" together, I cooked, and by cooked I mean I opened cans of soup and heated the contents in a pot. We fed our hungry boys and I began the soul crushing job of cleaning our house before bed. Around 8:30, I remembered Daniel's rash on his hand, and that I had wanted to test the possibility of it being fungal by treating it with some tea tree oil, so I mixed some in some carrier oil and rubbed it on his palm...and realized his hand felt oddly hot. His forehead felt cool, but just to play it safe I took his temp. 102.2.
"What. The. Fuzz." I might have said. "This is not happening tonight."
"What fuzz! Happen 'night?" Alex repeated.
My mind immediately began clicking through the situation.
1. Incapacitated, drugged husband incapable of doing more than painfully shuffling about.
2. 21 month old incapable of falling asleep without me, at least without a lot of inconsolable crying.
3. Local ER generally takes longer to get bloodwork done than it takes us to drive to Children's.
4. We were just. in. Denver.
5. Last time he was accessed, nobody could get blood return.
6. This time it could actually be a central line infection, since his port was accessed twice under less than ideal conditions nine days ago.
7. His counts had fallen by half nine days ago, so following that trend, we strongly suspected he would be neutropenic, so we needed to get him accessed and bloodwork done ASAP.
8. This felt like a likely inpatient scenario, so I needed to pack to be gone for an indefinite amount of time.
I wasted a few minutes trying to decide which was more important, sparing Bobby the nightmare of bedtime with a toddler who has never gone to sleep without his mommy on the very day he voluntarily mangled himself, or getting Daniel to the ER in case he was potentially going septic. Daniel looked pretty well, giggling at the Cat's Thingamajigger, snuggled against Bobby's shoulder, so I grabbed Alex, turned off lights, forewent all bedtime routines such as teeth and jammies, and lay down with him to let him nurse. It took about a half hour for him to unwind, then relax, then finally sleep. I got myself eased away from him and out of bed, then sprinted to the bathroom, threw some essentials in my purse, swept some shirts and jeans off my closet shelf into a bag, grabbed some shirts and jeans for Daniel (notice what I am forgetting here?) and threw it all in the car. I drove tensely over icy roads until the ice gave way to dry pavement, then broke the speed limit, and once here, they let me breeze through the waiting room and into the back like it is supposed to work when a possibly neutropenic kid comes in and everybody is on their game.
This entire time, Daniel was beside himself because I had so rudely interrupted his cuddle time with Daddy to put him back in the same car seat he had spent most of his day in, and was loudly vocal in his judgement of the fact that I was by far the inferior parent and if I were his Daddy, all of this would be so much easier. Now that he has started talking so much, he has a surprising vocabulary with which to express himself, and he used it liberally to inform me of my many parental shortcomings, the chief of which was I was not the parent he had chosen to be his friend on this particular night.
His access was rough, the nurse puncturing his skin, then sliding the needle around on the surface of his port before shoving it into the rubbery reservoir. He cried more than is usual for him. There was no blood return as expected. The nurse (who I had decided to like, but then had strained our relationship with the sadistic port access) announced she would have to access his arm vein, and to her surprise he pulled up his sleeve and flopped his arm out, vein up, ready for the needle, no hesitation in offering her a second chance. So naturally, she then performed the most brutal venipuncture I have ever seen, pushing the needle into his skin, then rooting around under it for the vein, tearing more than puncturing, blood running down his arm onto the bed sheet. He has a big, gorgeous vein and has never had the experience of a poke being more than the half-second of sliding the needle into it. He cried and cried, inconsolable, tears and snot all over his face, while I nursed him and simmered.
They filled his port with TPA, an enzyme to dissolve the clot or fibrin sheath or whatever was blocking blood return. Since they could not draw cultures from his port, they drew them from his arm, then started fluids and antibiotics in the same arm. Bloodwork came back revealing he was indeed neutropenic, which meant we would be staying upstairs in one of the 7th floor luxury suites for at least the next 48 hours, which is about the time frame for things to start growing in his cultures if they were going to.
After many failed attempts and a second dose of TPA, the port finally returned blood about 4am, so cultures were taken from it, but that was after broad spectrum IV antibiotics had already been given, so that might affect the results. From what I understand from other conversations during other stays, it is somewhat of a complicated thing if a biofilm forms over bacteria in a central line, it can be fairly easy to blast with antibiotics and clear up the surface, thus getting clear cultures, without getting all the bacteria under the film, which apparently can work its way out again later. I dunno. I only went to high school.
In five hours, the cultures from his arm will have had their 48 hours of fame. His fever has been gone for over 24 hours. Those are generally the only criteria for discharge as long as counts aren't too concerning. But. His ANC has dropped further. Until they are sure his counts have hit nadir and are trending back up, we'll be here. They'll do more bloodwork early tomorrow morning to see if we headed back up today or further down.
I have to say, the hospital with a four year old who feels okay is so much easier than a sick, miserable three year old. I am amazed by how much more self sufficient he is this time. I can leave him in the room by himself and get a cup of water. He pushes his own "octopus on wheels", which is what he has christened his IV pole, holding his tubes up so he doesn't step on them. He takes himself to the bathroom.
In the meantime, word from the other half of the family is that Alex and Daddy are doing fine. Apparently Alex will go to sleep for his daddy with many repeat renditions of "You are my Sunshine". He still wakes up and goes stumbling around the house at night searching and crying for me, but once he is reminded that I am at the doctor with Daniel, he stoically climbs back in his bed and lies there silently until he falls asleep. This both breaks my heart and reassures me. He is okay. He loves me and is incredibly reluctant to leave me, as a kid with a healthy sense of attachment should be. But when I am not there, he finds other sources of comfort, as a kid who is confident he is loved should. I guess it's working, this idea that I want to intentionally parent them with constant availability to prepare them to chose when they withdraw from me as a source of comfort rather than forcing them away before they are ready. I needed this test. We both passed. Velcro boy can function on his own when plan B requires it.
Since it is working for Alex to stay home with Bobby, we are making do without the things we forgot to pack. I think it is amazing that a four year old on fluids is still in the same undies, but he is. Not to fear, I've been hand washing with hand soap and hang-drying our delicates overnight. I admitted to a nurse that I was running around commando while my undies dried, and she disappeared, then returned with a brand new pair of cutesie panties, tags still attached. Turns out, people occasionally donate brand new underwear because they have been here and know the struggle. She said it was the last pair they had, and it was a good thing I wasn't any bigger because they actually fit. I know what I'll be donating to them the next time I find a great sale. Of all the curtesy items offered to us in all of our stays, this was by far the most appreciated.
You might be a hospital parent if you have ever washed your donated underpants in an emesis basin.
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