T-12 First Day of Campath

Ethan received his first dose of chemothapy about midnight last night. This drug is called campath. Campath tends to cause fever and nausea, and it did. Ethan had some discomfort over night, maybe nausea or cramping a little after 3, he vomited a little bit and developed a fever of 102. Ethan will receive five days of campath. They say that the reaction gets stronger as the doses progress.

Ethan got an okay night's sleep. He's gotten about 7 hours so far. Hopefully, he'll be able to squeeze in an extra hour before the 8am vitals check wakes him up.

For me, yesterday felt like the first day of school again: trying to get back into the hospital routine, learning the names and side effects of the drugs he'll be on, understanding what the nurses will need and when, and most importantly talking with the nurses and making sure they understand my preferred schedule for Ethan.

Usually when we're inpatient, I talk to the evening nurse when they come on and try to talk through what time I'd like to administer Ethan's last oral meds, checking what times they're going to need to do vitals. It's a lot easier if we talk through this stuff ahead of time.

You see, I hate night time in the hospital. As a parent, my main concern over night is to make sure that Ethan gets as much sleep as possible. And Ethan can take a long time (sometimes 2 or more hours of cranky fussiness) to get back to sleep Meanwhile the nurses have a number of thing that they need to do that can or will interrupt his sleep. Most of these just need to get done--and I can only hope they get done as quickly and as quietly as possible. A lot of times though poking, prodding and monitoring can be consolidated to minimize the number of interuptions.

Such was the case last night when I started to giving Ethan his evening meds and getting him ready for bed. The evening nurse mentiond that she had an additional oral med that she need to bring in about an hour--a premedication for Ethan's campath. It just bugs me a whole bunch that they didn't schedule it better. I did get somewhat jerkish and told her so--though I later apologized and explained that I should have made a point to check with her and compare notes, needs and expectations about the evening. I knew better, knew I should have checked in and talked it through. But it was the first day of school again and I just wasn't up to speed yet.

Night nurses have one of the hardest jobs in the hospital. They're tasked with doing important things, administering all the same protocols they run during the day, but they've got to be uber-quiet while doing it all by flaslight, and they are dealing with sleeping patients and grumpy family members (me) and when famiies want to negotiate or throw up firm barriers they don't have all the daytime doctors around to clear things with. They are, more than the daytime staff, on a highwire act without a net. I get it.

At the same time, many nght time nurses tend to be on the younger side, not many years out of nursing school, and they're on nighht shifts until they build up enoug senority to switch to days. Newer nurses tend to be very focused on trying to follow the protocols and requirements as strictly a possible and they haven't learned when they can maybe skip getting a blood pressure so they don't wake the kid up, or how best to consolidate meds schedules.

It's like Ethan's 4p vitals check yesterday afternoon. Ethan hates getting his blood oxygen level taken. He's scared of the toe monitor with the red light on it, I don't know if he thinks because it's red it must be hot, or what. But they'd taken his O2 level at noon. And he'd had absolutely no meds or proceedures between noon and 4. They'd done absolutely nothing to him, there was no reason to think his O2 level might have changed. When I pointed this out to the nurse and suggest that we might skip it, her answer was a succinct "proceedure." Okay, we'll roll with that, though later on in his treatment we may veto certain occasional vitals checks if we feel he's stable and the check would be too disruptive.

For myself, I was way too tightly wound last night.

One of the pumps that Ethan's hooked up to sounds exactly like the room door opening and it cycles every minute or so. Everytime it wold cycle, some part of me responded like the nurses were coming in. Each time it cycled, I literally tensed up so that I could be ready to soothe Ethan if he woke up or fussed. Clearly, I need to settle down and get some perspective and just roll with whatever some more.

I finally settled down by listening to soe music and going to my happy place (really). (But I still don't like that pump.)

So, after getting Ethan to sleep at 10, I finally dozed at 1 and fell asleep at 2 before being up with Ethan from 3-5. Fortunately, I got a couple of good hours fromm 5-7 before one of Ethan's pumps started beeping.

Sarah and Caleb are coming over in a bit. Sarah's going to relieve me and take today and tonight. So, I should be able to catch a nap and a good night's sleep.

Meanwhile, Ethan has been officially hooked up to "the pole.". The IV poll

holds the meds and pumps that will deliver most of his meds, and when he's not on meds he will be on normal saline to keep him hydrated and keep his kidneys flushed. He will be hooked up to this poll almost 24/7 from now unt the time we leave. The pole will grow brances and become a tree as additinal meds and pumps are added over the course of treatment. One of the first things I do when I come across a patient is look at their pole and see how many pumps and meds they're running at the same time.

In addition to hauling the pole around, the other fun thing is managing Ethan's lines so they don't get tangled or caught ln anythng and pull the central line that's in his chest. At the moment, Ethan's got 5-7 lines of various lengths and diameters going into his two central line ports. Anytime he moves, it's a challenge.

Alright, time to run. Will post more when we can.


Anonymous said…
Bless you Waddell Family!
Marionette said…
Keeping my fingers crossed that the side effects don't get worse and that your caregivers are as flexible as possible.
Take care,
Marionette & Cory
Wendy B. said…
Todd, your observations and insights are spot on!! If only more families were as astute. Prayers and good wishes headed headed toward the Waddells, full force....Love, Wendy
Gordon said…
This comment has been removed by the author.
Gordon said…
Thought and prayers as always are going out to you from us here in Maryland. Peace.
Eric said…
Wow...it's like I never left. Your descriptions are bringing it all back. It's a tough read, but a great read none the less. Thanks for being so open.

Gil fell asleep with me on the couch Thursday evening. Before I got up to carry him to bed, I prayed long and hard for Ethan as I held Gil. I also prayed a father's prayer for you, that you would be sustained and comforted...also that you would be given insight and perspective.

We'll stay up-to-date with your journey via your blog. Please give Ethan a hug from Gil (and me).

Rike Family said…
Hugs to you all! Thanks for the update and the pictures. It helps me visualize what it's like for you. I hope you get some rest today.
Erica J. Thiel said…
As the parent (or the patient) you always in my opinion have the right to speak up and speak your mind - yes we as parent snd patients can always monitor how we treat providers and speak carefully but providers no matter what provider also need to consider the family and be adaptive and willing to make changes to make the families lives easier! Good for you for speaking up!

You are not alone in your hatred of night time in hospital, and whether you are back at school or just relearning stuff it's never going to be easy. The first time around you don't mind so much as you don't know what to expect but now, well seasoned, it's such a dread even the thought of it. It will get easier with the staff when you're all used to each other and they get to know you're little ways! Just remember it's not forever and you will get through it. We had a drug called Buscopan written up ready for CJ if he had cramps from the chemo. Inevitably symptoms would be worse at night when there wasn't our usual doctor on shift! As always you write with such openness and honesty - maybe write or print this off to show your providers what you as a family have gone through. It will personalise your situation to them. Our consultant gives a copy of my 'parent's view' to everyone involved in our care! Love and hugs to you all, constantly in our thoughts xxx
Anonymous said…
Oh blessings and hugs.. Todd you are such an awesome Dad for these boys...what a gift in their lives.. Please know that and know they know that so very deeply... It was such a pleasure to meet your family at Jeffrey's birthday. You all are in my thoughts and I lurk here a lot... C: Theo