The End of an Era... And the Beginning of a New One

Yesterday was my last shift in the emergency department. And Monday will be my first day in dialysis. It was so surreal yesterday, thinking that I was going to leave at midnight and not go back. I couldn't wrap my head around it. It was kind of a slow day, too, not that I had a shortage of things to do to keep me busy. Lots of things to wrap up, people to say goodbye to, emails to respond to, files to clean out, etc. Just not too much direct patient care, which was sort of weird.

It was good, though, that I wasn't getting phone call after phone call for patient and family needs, because I was busy dealing with a personal situation at work. I know, that doesn't sound like it makes a whole lot of sense. A very close friend of mine, a girl I've known for many years from Camp Sunshine, is in the ICU at Children's, intubated. H is now 15, and was diagnosed with a brain tumor in infancy, I think - definitely under 2, I think under 1. She's one hell of a strong kid! Her tumor is low-grade, meaning it can lie dormant - "stable" - for years at a time, with no additional growth. It's technically benign, although all brain tumors are considered cancerous. In the past, she's had surgeries and things, but she's been on a particular chemo regimen for many years. H and her family live in Connecticut, and her mom L drives her into Boston for treatment at the Jimmy Fund Clinic (part of the Dana Farber Cancer Institute, and which is connected to Boston Children's) every Wednesday. This has been going on for years, because the chemo has been successful at holding her tumor at bay.

Well, this past Wednesday, just as they were checking in to clinic, H collapsed. She had a seizure and went into respiratory arrest. A code was called, and she landed in the ICU intubated and sedated. She hadn't been having any complications and nothing out of the ordinary had been going on, so this was totally unanticipated. The whole Camp Sunshine (and beyond) brain tumor community - all friend's of H and her family - have banded together to try to help. While I'm not a "brain tumor mom", I'm an extension of this group, because I know everyone so well from volunteering at Camp Sunshine for so long and getting to know them there. We're all facebook friends, and some of us have gotten together outside of camp at times. H and L came to my baby shower, and they were going to come to Jordyn's first birthday party until something came up at the last minute. I *love* these people!

So needless to say, I've been pretty upset about all of this. I had the idea to have everyone send me pictures and notes for H while I was at work yesterday, and I printed them out, mounted them on fun scrapbook paper, and delivered them to H. It was awesome, basically exactly the kind of thing a child life specialist does, except this was in a personal situation instead of work. But since I work at Children's, I was able to easily go up and visit H and her parents. I brought her a stuffed pig, since pigs are her favorite, and balloons, and some food for her parents. H is intubated, but in and out of sleep/sedation, and when she's awake, she's pretty aware of things. She reached out to hold my hand, waved, nodded and shook her head, shrugged her shoulders, tried to smile when I said something funny, and can type things out on the iPad to communicate her needs.

Another idea someone had was to make her a video. So all these parents made videos of themselves and/or their kids, dogs, whatever, to send messages of support, love, and strength to H. One mom edited them all together, and sent the video. H loved it, of course, and so did L. Someone else realized that today was L's birthday... lovely. So we made her a video, too, with videos of everyone singing and wishing L a "happy" birthday. She loved it. They're so appreciative of our support, and I love that we're able to be here for them. Here's a video I made of Jordyn to be included in the birthday video:

The real shitty part of all of this  - as if this whole situation isn't shitty enough already - is that the doctors took H to the OR today to try to remove the breathing tube, and it didn't work. There are some complications that make it unsafe. They're discussing the options, trying to clear out H's lungs, and will reconvene on Monday. I have a strong feeling they're at least considering her need for a trach, and that sucks. I mean, it's better than the alternative, but still. And so, we wait. And pray, although I'm not really one for prayer, but at least think positive thoughts. The group's motto is "H Strong" (with her whole name), a take off of Boston Strong, which came about after the marathon bombings in April. We all just feel so helpless, and all we want to do is be able to help.

Ok, so this post wasn't really supposed to be all about H, but it seems to have morphed into exactly that. I guess I needed to talk about it. And I think the title of the post probably fits her situation, too, unfortunately.

But anyway... So yeah, I'm finished with the ED. With the crazy, inconsistent schedule. With working until midnight. As I said in the email I sent to my colleagues, "It's a very bittersweet move; while I'm excited about the new challenge in dialysis, I'm going to sincerely miss my work and my colleagues in the ED. It's been a great 4+ years, and while I really will miss the ED, I'm looking forward to building therapeutic relationships over time with the dialysis patients, and a more consistent, 'normal' schedule that will allow for a better work-life balance and time with and consistency for my daughter."

I'm a little concerned about both of our ability to switch to an early schedule. I'm probably the only parent of a young child in the world who was actually happy about DST last weekend, as it helped move Jordyn onto a slightly earlier schedule without me having to do anything. Although, it doesn't really seemed to have moved her much earlier, now that I think about it. I've been moving her bedtime back a little bit this week, at least when I've been able to, and you know what? She's slept later the following mornings, not woken up earlier!! It's that old theory of if you want a baby to sleep later, put them to sleep *earlier* coming into play, when I wanted it to have the opposite effect! So I can't figure out how to move her wake-up time earlier. Hmmm. I think I'm going to just have to wake her up much earlier than she's used to for a couple of days before she does it on her own, and that seems like a horrible way to start at daycare... 

Monday her daycare is closed for Veteran's Day (it's no longer a hospital holiday which is why I'm working), and plus, I want to transition her in slowly and not just drop her off one day for 9-10 hours. So Monday, the babysitter is coming at 7am (yikes!!), and I'll leave shortly after she arrives. My sister is coming at 9:30 for the rest of the day, since the babysitter has to be somewhere at 10 (my parents are out of town). I'm trying to decide whether or not to wake Jordyn up before I leave to say goodbye, because it's very doubtful she'll be awake. This is new territory - I'm used to not being home for bedtime, but not being home to get her out of her crib in the morning is brand-new. I feel like leaving without waking her is akin to sneaking out when she's not looking instead of telling her I'm leaving before I go. But at the same time, waking her up seems silly since she doesn't have to be up early that day. I just hate to think of her being confused and upset when the babysitter walks into her room instead of me. What would you do??

[Please note: I'm NOT complaining about Jordyn sleeping late (about 7:15-8:15 depending on the day). It's a VERY GOOD problem to have, except that it sorta is a problem right now with this schedule switch we need to make. But please don't misunderstand me - on the days I don't work, I'd love for Jordyn to keep sleeping late; I'm really NOT complaining!!]

And then Tuesday in the late morning, we're going to daycare for the first time. Yes, "we" - I'm going to stay with her for a little while and hopefully help her settle in. And then I may leave for an hour or two, until just after lunch, and I'll pick her up before naptime. Wednesday I'm planning to bring her earlier in the morning and leave her for about 5 hours, until just after lunch again (and boy do I have plans for those 5 or so hours of freedom!!). And then I work on Thursday and Friday, and I'm planning to bring her to daycare for the full days. Does that sound like a good transition plan? Too slow? Too fast?

The first two weeks of my new job, my days won't all be my regular ones, because I have to overlap with my colleague for orientation. Then the week of Thanksgiving, she was able and willing to switch Tuesday and Wednesday with me so that Jordyn and I can drive up to my aunt's house on Wednesday for the long holiday weekend. Starting the first week in December, I'll be on my regular schedule - working Mondays, Wednesday, and alternating Thursdays and Saturdays. 

So there you have it. We're on to (hopefully!) bigger and better things - a "normal" schedule, daycare three days a week, being home for bedtime every night, and consistency for both of us. And moving as far away as possible from my parents as consistent child care providers. They'll still have Jordyn when I work every other Saturday, but that should be ok. Wish us all luck with all the changes ahead!