Warning: Seriously long post with no pictures. Bear with me…
Three Mondays ago, I started another week by bringing Ian down to Children’s in Minneapolis for another round of chemo (Round 3). IT Guy had the day off, so he stayed home with the other 7 children, including Baby Faith, who is fully weaned and a champ with a bottle these days. We had been at the hospital less than an hour when my phone rang. It was IT Guy, and he wasn’t just calling to say “I love you”.
Joseph & Mercy were vomiting…
This was going to be a really long day.
The chemo seemed to go fine for Ian, at least for the first several hours. By late afternoon he was feeling less than wonderful and had lost his appetite. I was glad he had eaten a pretty healthy lunch. We had brought with a bag of organic baby carrots, a bag of his favorite apples (Granny Smiths), some Clif Bars, and some Ginger Chews, so he could get a little nutrition in regardless of what he decided to try in the form of hospital food. We also brought with some green juice and some delicious full-fat honey sweetened greek yogurt to make some easy (and yummy) smoothies. We did get some good calories into him before he started feeling crummy, which, considering his recent weight loss, I was thankful for, especially when he didn’t eat anything else, other than some Ginger Chews and a couple of ginger snap cookies, for the next 2 days.
IT Guy called back a couple of hours later. Hope was vomiting, too…
I struggled with more than a little mom guilt. I felt guilty for not being at home to help with 3 puking children. I felt guilty that I was kind of relieved to be on hospital duty with Ian while IT Guy held down the fort. I felt guilty for hoping that I would not catch the dreaded stomach bug.
We had hoped Ian would be ready to come home on Tuesday. His chemo was finished, and he’d had 24 hrs of fluids to help flush his kidneys. His labs looked good. But, then he mentioned the hallucinations.
That was weird.
Hallucinations aren’t normal side-effects of the meds he was on. They talked amongst themselves and decided that they wanted to keep him overnight again for observation. They decided this right about the time my husband was parking his car in the Children’s Hospital ramp. He had gone gown to pick him up after work. Well, he ended up staying for a good visit with Ian, which was nice as he hadn’t been able to see him the day before, you know, due to the puke fest he was moderating at home.
Ian stayed another night, and after they took into account the timing of his meds and his hallucinations, it was hypothesized that he was having an odd reaction to some Benadryl. Crazy. Benadryl, of all things! Our family of asthma and allergies has a lifetime of Benadryl-taking experience, without ever experiencing hallucinations, but what I did not know, is that sometimes some people can have a weird reaction to a quick IV push of Benadryl (due to metabolizing it differently than they would if it was ingested)- around 15 minutes of general loopyness. So, yeah, that was a new one for us. I guess Ian’s form of loopy is hallucinating. Wanna know something weird? My husband’s sister had the same rare reaction. Wanna know what makes that even weirder? I was a single mom (of a boy named Ian) when we met, Ian is not blood related… Just a coincidence, if you believe in those…
So, let’s see, Monday was chemo and puke, Tuesday was hallucinations and an extra night in the hospital. Wednesday, Ian was discharged, IT Guy had a stressful interaction with a business associate- a potential loss of a customer (which, he did end up losing, there was a problem that could not be solved, the details involved 2 other companies they do business through, it was out of his hands, nothing he could do), which, for a self-employed business owner is a very big deal.
I knew there was something different about Grace’s cough on Wednesday. I could hear it, the allergies and asthma kicking in. I started her on Benadryl, the run-of-the-mill oral kind (Oh, the irony) and started giving her albuterol nebs every 3-4 hours. I checked her O2 multiple times (our pediatrician hooked us up with a good pulse-oximeter years ago), and she was always nice and high, 94-99%. I had a feeling, despite her good numbers, just by the sound of it, that this was going to be a tough round. I feared she would need another round of steroids, but I was really hoping we had started the nebs in time to keep her opened up breathing free & clear.
By Thursday morning, I knew we were in the midst of a real flare-up, but I wasn’t too concerned. We’ve been through many a flare-up, we have an arsenal of meds, and we have an asthma action plan that we are all too familiar with.
By this time, I was starting to feel a bit overwhelmed by our week- chemo, 3 children vomiting, business/financial stress, and now the asthma… Can you say ugh?! I sure did…
By Thursday evening, the wheezy cough was a little more concerning, and her O2 was looking borderline- in the 90-93% range. Her pediatrician doesn’t want to see her dipping below 92% for any length of time. Same thing from the pulmonologist at Children’s. I had her go to sleep down on the couch, like I always do on the nights that I know I need to watch her more closely, and then I stayed up good and late so I could check her one last time before heading to bed.
Grace had albuterol nebs at 8:30, 9:30, & 10:30. They’re prescribed for every 4 hrs, or more often as needed. She has often needed back-to-back nebs to get ahead of her bronchospasms. She wasn’t sounding too great, hence the hourly nebs, and when I checked on her at 11:30, she sounded even worse, but not in the coughing uncomfortably sort of way.
She was sleeping soundly, not coughing at all anymore. The quiet had calmed my fears. Her bronchospasms had finally settled down. I wasn’t hearing that progressively more congested sounding cough. She wasn’t tossing and turning, restless in her sleep. She was comfortable.
One of the pulmonologists we saw, down at Children’s, said to me “her asthma scares me.” Our two chronic asthma girls’ asthma acts differently in each girl. Hope can be horribly wheezing and hacking away, and yet maintain her O2 in the 94-97% range. It’s still concerning, when you hear that kind of restricted breathing, but she manages it all quite well, and almost always responds quickly to her rescue meds. Grace, on the other hand, can seem fine, barely wheezing, not even enough to hear, unless you lean close. She can slip into a calm and restful appearing sleep, not tossing and turning, repeatedly sitting up coughing, struggling to breathe in the night, and yet her O2 level will be taking a nose-dive and her chest getting tighter and tighter, without any of us hearing a thing. If she’s awake, she recognizes it now and can tell us she’s wheezing and needs rescue meds, but if she’s sleeping… That’s why Grace’s asthma is scary, it can seem silent, and, yes, people do die in their sleep from asthma, kids and adults alike. They don’t always wake up struggling to breathe…
But like I said, she was sleeping comfortably. The multiple nebs seemed to have done the job and quieted things down. I had expected to check on her, find all was ok, and head to bed without having to worry the rest of the night.
And then I heard that wheeze (an awful lot like the one at this link).
The tight whistle, along with some plainly audible stridor.
One of my under-4-footers had lost one of the ear buds to my stethoscope, but I didn’t need a stethoscope to hear Grace’s not-so-normal breath sounds that night. I leaned in, my head about 12 inches from her chest, and my heart sank. I quickly slipped the pulse-oximeter onto her finger and my heart sank a little further. 86%, and while I watched her breathe like that for another minute or so as I contemplated what I would have to grab to take with to the ER, I watched that number slip down to 83%, at which point I woke her up, administered another neb, got her shoes and a sweater, grabbed my bag and my car keys, barely woke my sleeping husband enough to tell him I was taking her in, and away we went.
Two kids, two hospital runs, this was one of those weeks…
We spent a couple of hours in the ER, their DuoNeb helped more than our plain albuterol had, her numbers hovered in the 91-95% range (of course, she was awake and sitting up, her numbers always bounce up a bit when she’s awake and sitting up), and we were able to avoid having her admitted, though I was a bit reluctant to bring her home, as we have been sent home before only to see her numbers fall way too low in an hour. She was in the ER three times one night before finally being admitted (and transferred down to Children’s via ambulance a few hours later, long story, even longer night…)
Anyhoo, we were home. She was on antibiotics, oral steroids (the ones I was hoping to avoid), regular nebs, and lots of pulse-ox checking by her very tired and rather worried mother. She definitely had developed bronchitis (I hadn’t mentioned it, but she had also developed a fever in the night), and the doc had thought maybe a slight crackle/touch of pneumonia, so he started her on an antibiotic that would knock out pneumonia, as well as bronchitis, and spared her the radiation exposure of yet another chest x-ray to confirm.
We had a homeschool field-trip scheduled for Friday morning, but, yeah, that wasn’t gonna work out this week…
We made it through Friday afternoon’s regularly scheduled 3 hrs of rehab therapy appointments with Ian, and pretty much collapsed into our weekend, still monitoring Grace and pumping her full of meds.
On Saturday, I went to pull some chicken out of the deep freeze when I discovered that it wasn’t running, and that we had several thawing chickens and turkeys, along with all kinds of fruits and vegetables all about to go bad.
Seriously?! Really, Lord?
I didn’t know whether to laugh or cry, so I did a little bit of both, and set out the roaster oven to cook a spur-of-the-moment turkey. Turkey isn’t usually a spur-of-the-moment sort of thing, but we rolled with it. I baked a large pan full of chicken breasts, which I then put up in the freezer-over-the-fridge for a future meal. We all enjoyed several cups of fruit smoothies (no complaints there!)
They say “when life gives you lemons, make lemonade”, and I say “when life turns your freezer off, make a turkey and some smoothies”.
I can’t tell you how many times that week my husband and I, independently and together, stopped and turned to the Lord in prayer. Sometimes prayers of “Why? Oh, why is this all happening? Cancer? Vomit? Financial issues? Asthma scares? Freezer full of thawing food? All in one week?” Sometimes payers of “Oh, Lord, please, I don’t know why, and I don’t need to, just please help us get through this week!” Sometimes prayers of “Lord, in all of this craziness, we still see Your hand of mercy, we still see Your grace, we still thank You for Your goodness and faithfulness to us…” Often prayers of “Teach me, oh, Lord, what it is You would have me to learn through this…”
Sunday came. It was Resurrection Sunday, and we played hookie from church.
I know! What kind of Christian family does that?
Well, this kind. We did that.
We needed some down-time. We needed a rest. We needed to breathe, just breathe, together.
And it was so good.
And we were ready to face another week, though we were hoping the next one would be a little less, um, eventful.