Tuesday, March 26, 2013

Whooping Cough Journal, Part 1

Last spring and into summer, our children had whooping cough.  Thankfully, they came through it okay.  I kept something of a journal through it, to note how everyone was progressing. When the days and nights begin to blur in fatigue and you have 5 children fighting it, you start to feel you need to keep notes.  This was useful to me, and I thought it might be helpful to others to see as well.  I am reorganizing, editing, and adding notes [many in brackets] to help give a chronological and clear picture.  Sometimes the journal jumps around, etc. -- I was pretty exhausted and these were rough notes at times anyway, frequently mixed with other notes of the day.  I've forgotten many details, I'm sure, but there are some contained here as recorded at the time or shortly thereafter.

Please note as you read this that I am not any kind of medical professional, and I am not giving advice.  I am simply recounting my experience.  Please also note that this may be disturbing reading.  Whooping cough is a serious illness, and I'm describing details.  The details for many illnesses would probably be rather disturbing to read about if enumerated, especially when they involve children.  Just a warning.

I'm going to be referring to everyone except John and me by their first initials in this post.  In case you're unfamiliar with my family, here's a list for your reference of who we were at the time:

John - my husband (fully immunized as a child, perhaps a booster or two, but unknown) -   asymptomatic, but took antibiotics as a precautionary measure
Amber - that's me  (fully immunized as a child, perhaps booster as teen- uncertain) - asymptomatic
B - 12 year old girl (4 immunization shots in infancy) - got pertussis (unconfirmed, but symptomatic)
P - 10 year old boy (3 immunization shots in infancy) - no pertussis (mostly asymptomatic)
Z - 8 year old girl - got pertussis (unconfirmed, but symptomatic)
T - 5 year old girl - got pertussis (unconfirmed, but symptomatic)
L - 2 year old girl (nearly 3) - test-confirmed pertussis
A - 8 month old boy - test-confirmed pertussis

For those who will question, I went ahead and included info about immunization.  Assume they are unimmunized if nothing is noted.  If you wonder at this, the short answer is that we made an informed decision to stop immunizations, our doctor fully aware and understanding, when we became concerned about our oldest son's health when he was around a year old, and have not resumed to date due to related concerns.  The long answer is... well, much longer. 

I also want to note that those of us who got pertussis now have a probable lifetime immunity to it.  Knowing that those who have had the disease have also gained natural immunity is something that can give a little encouragement in the discouraging times of going through this nasty illness, and a lot of comfort when you're over it and you know that it's still being passed around.  It's a bit of a strange twist that the only ones in our family who have questionable immunity to it now have been immunized. 

Okay, without further delay...

Whooping Cough Journal

May 12, 2012 (Sat):  This is when we mark the start of the illness.  If there was anything before this time, it was so mild it was unnoticed as any concern at all.  The children had a pretty bad cough on this day (a Saturday) but we didn't know it was pertussis.  It wasn't nearly as bad as it would get yet.

May 13 (Sun):  We didn't know yet that it was pertussis, or we would have kept the children home.  We were scheduled to be in a certain small town meeting with a church for which John (my husband) was to speak, and were looking forward to seeing friends there.  We knew the children had nasty coughs, and may have even wondered about pertussis before going, but who hasn't wondered about that whenever their children get really bad coughs?  It took me a while to be sure.  So we went.  At some point on this day, we began to think it really could be pertussis.  I guess someone at least must have been whooping?  In the evening I wrote: "Children have a bad cough, maybe pertussis -- we went anyway to L-- today.  Hope we don't regret it w/children's illness. S-- was very glad to see them."

May 14:  I wrote: "Awful night last night w/children's horrible coughs.  John and I both up helping them and checking on them.  I think it's definitely pertussis.  Can't seem to manage to catch a 'whoop' on video, but they've definitely had some of that.  John and I spent part of today taking turns catching up on sleep -- not exactly what I'd hoped for today..."

I did most of my research on the disease online.  One of the most helpful sites I found was this one:

It is right on with the descriptions of the disease, and gives you a very realistic picture.  He even has at least one video on there, which was very helpful.  I may try to upload some video later that I finally got.  I wanted to get a video to show a doctor if we needed to for confirmation.

The rest of that week in May I noted in almost anything I wrote how tired I was.  Pertussis is an extremely exhausting ordeal, for both the sufferers and those who care for them.  There are really almost no symptoms at all aside from the cough, except possibly early on if you get the cold-like symptoms in the first couple weeks (which mine did not really get much, if any).  This means that a young child isn't left feeling just icky and wanting to lie around like he would be if he had almost any other sickness.  So it's not like you're up in the night with the child and then get to rest during the day because his body is telling him he needs rest too.  The coughing decreases during the day, which is nice, but it gives you and the child both this false sense that things are improving.  It's hard to describe, but after a while it becomes like some tortuous endless cycle of interrupted sleep and making it through the day to yet another interrupted night.  And it goes on for weeks.  I'm not trying to scare you here.  It's just really not a fun disease at all.  Knowing what it's like may be more helpful than anything.  With fewer children and/or all children who are older, it may not be as challenging.  But this was my experience.

I wrote the above paragraph when I was thinking of just summarizing more of the rest.  I'm going to go ahead and include details in case they are wanted, though of course most people won't need all this.  It's going to be lengthy.

May 17 (Thu): John was in Colorado on business.  I'm not certain from my records whether he left the 16th or 17th.  Usually he leaves on a Wednesday when he goes out there, about once a quarter, That may be what he did, based on the things I do have recorded, but I didn't write down for sure.  He was gone through the 20th.  If we'd had a better understanding of exactly what I would be dealing with in his absence he may not have gone at all.  Writing about it after the fact with my current level of understanding, it seems kind of stupid.  But we still hadn't had the children tested for the disease.  Even though I wrote "I think it's definitely pertussis," there was room for a little doubt because it wasn't confirmed by a test.  And we hadn't yet experienced the disease and didn't know what we were in for exactly. And there was important work to be done. 
What I wrote on this day: "Well, ha -- looks like all I did today was call R-- [lady at a farm we usually visit weekly to buy some groceries -- that's all I'd taken time to write down, too busy to note anything else]. Told her children are sick.... Made chicken chowder for supper [with good homemade bone broth] and cooked the sweet potatoes.  [A has diaper rash] in addition to his sickies.  Fussy some, in the evening...  Fighting pertussis.  So tired.  So tired.  Phone with John and Mom... So tired."

May 18:  I wrote before bed: "Made it through the day, and that was much of the goal."

May 18, night: B did okay, P okay, Z bad w/breathing challenge (see below) and other coughing fits, T some also -- shaking episode -- L not too bad but some definitely -- A pretty bad and scary w/his coughing episodes (wrote about this the next day some, see below). 

May 19: I wrote: "Just got through it.  Was EXTREMELY Tired, after a very scary night w/A, Z, and T having issues w/their coughing and breathing w/this stuff - was on the phone w/John when it started and just kept having problem after problem w/them, John started thinking he should come home, but we hated to have him do that.  He wanted my parents to come but I didn't want them to get sick, so I was upset and crying but he called Dad, and Dad came over.  Pitiful.  Mom followed too and I hated to but I let her stay the nite in case I needed an extra pair of hands."  [She came back again, too, and brought us juice, etc.  My parents are so wonderful.  I love them so much!  And thankfully, they didn't get sick. Mom did go get a shot since she'd been exposed.]

May 19, night:  "B did really well, slept all night through -- did have some coughing and took a bit of cough med [rarely give them this and it's not my ideal at all, but with this we tried experimentally due to desperation and she thought it helped some] and a cough drop before settling to sleep.  P did okay, had some throat itching... but nothing worse." For the others see description on the next day where I described in more detail for recent days.

May 20:  "Clint's been gone 22 months [my brother who died in a car wreck].  Caring for babies of my own -- oh, to lose one would be so, so very heartbreaking!"

On this day looked back and considered that I wanted to make better records, so I wrote more and covered some of the ground I already had in more piecemeal fashion.  "Today is 5-20 and we've been fighting for a week.  Early on, B was having trouble sleeping with her cough.  P had what we thought was an allergy with a runny nose at night and some cough at least, but his hadn't developed into anything awful.  Z has had it pretty bad, but started getting worse perhaps a little later than the others.  The past two nights she's had episodes where she wakes up scared because she can't get her breath and she runs into me all wild-eyed scared.  [This was quite alarming for both of us.]  She slept better overall last night than the night before, I think, but still not great.  She whoops.

"T's cough is different -- REALLY loud and barking, and not much if any whoop.  [I found through my research that this is a cough variation some people have.] Last night she slept really well until early morning hours and then woke w/that horrible cough [so bad she was] shaking from it -- which she also had the night before.  Well, I thought for a minute that she slept better overall last night, but I don't think so actually, b/c though she did well the first part of the day, when she started she had trouble stopping coughing.  Just kept going -- not without breathing, but just hacking away.  She came into my bed finally and settled in some better.  Today she is coughing more so far -- or I'm noticing it more? -- whereas yesterday I thought maybe she was improved.  [Ha, can you tell how tired I was by that mangled description?]

"L's coughs are pretty bad, and I think she's tired and sicky feeling sometimes.  She and Z will both have a very tired/sick look in their eyes -- and A too, at times.  But other times -- even a lot of time in the day especially, you wouldn't know they're sick until they cough.  Z was so tired at supper last night she was falling asleep, but their energy levels seem mostly to be affected by lack of sleep, not by the illness itself.  As with me.  I've slept less than any of them at night and have had to make up in snatches through the day when I can to keep going while John's gone.  [When L coughs], she whoops and goes on a while, tears come from her eyes (at least the three littlest have this happen) and she gets a little purplish at times.  T gets red, and Z maybe red too, but I don't think purple.  L had a better night last night and the night before than previous nights.  Her cough has been noticeable and icky since she woke today, though.  It's almost like it comes and goes with them a little and just when you start to relax they'll scare you.

"A gets purplish frequently with his coughs.  He chokes and gags and sputters and whoops and coughs horribly, and tries to catch his breath in that baby way where they kind of throw themselves back and look so alarmed.  His is usually the scariest by far.  Not all episodes are like this.  Many are comparably mild.  He's more likely to choke and even vomit some (similar to normal baby spit-up but a bit more than that -- it's white and sometimes frothy and/or curdled) after he has nursed, and/or when he's been lying down [especially if lying down flat, which I came to regard as pretty much not an option for him, and often I ended up holding him while he slept as much as possible -- he already had a tendency to some reflux, so perhaps not all babies would be like that].  (L has vomited just a bit, only once or twice -- barely any amount, and T once I think, just a slight bit -- all from the coughing.  Z and B would go spit stuff out in the sink that came up in their mouths from their coughing episodes -- not enough to call it vomiting.)  Steam from the shower may help.  I run him in there when I get really scared or an episode seems like it maybe is going to be a bad one." [Sometimes I would also just run the shower hot and leave the bathroom door open into the bedroom where I kept the little ones with me, to help with humidifying.  We also have a vaporizer, and sometimes put some essential oils in the water to theoretically help.]

As for me, "I don't have it, but am extremely tired and do have some concern I could get it.  This AM I noticed I coughed just a bit and I have a mild soreness to my throat (some of them have had mild throat soreness off and on, maybe from coughing now, but early may have been the bacteria).  I'm trying not to think about it except to cause me to take good supplements when I give them to the children, etc.  Can't be sick now b/c I have to care for them through at least one more night by myself, and then with John the rest of the time."

"so far" on the 20th, I wrote: "L, Z and B slept in quite late (for them).  T up earlier but seems grouchy/tired after rough night.  L had quite icky coughing spells after getting up, at least 2.  I got video of one, best video I've gotten of it.  Z coughing still, typical daytime cough. T typical daytime also.  A has had worse episodes today also (and yesterday esp. toward evening they were like this and making me concerned for the night) -- in between acts fine, crawls, walks and explores as usual.  Been dealing w/this a week now.  Exhausting."

May 20, night:  "A had one very scary episode early on in the night, and then T and L had needs at same time as him a bit later.  Z did much better than previous two nights -- no getting up scared, though still episodes of coughing.  T had at least one up in bathroom session, and coughed quite a bit, but  I don't think as bad as previous.  L had some coughing but not just horrific.  A was definitely scariest and is our main concern at this point..."

May 21, day: "More sick care-- and research-- and talked w/Mom-- and S-- [Friend who along with her family was supposed to be visiting us soon.  It's amusing that these notes make it sound like I'm always on the phone.  These conversations were largely about things related to the sickness and having to change plans b/c of it] and Drs.... may go in tomorrow to see about culture/diagnosis for them/possible antibiotic though I hate that" [because of possible side effects -- and according to my research and what the doctor confirmed, it's not effective for most people anyway by the time they take it for pertussis].
"A has been the worst.  L also having quite a few coughing fits today.  A seems very tired and has vomited several times after feeding today -- usually not too much but at least a couple times were more and I hope he's getting enough liquids to avoid dehydration.  I have a mouth sore on top of it which has made it hard for me to eat and drink enough. And today I feel I'm fighting illness as well.:("

May 21, night: "A had another very scary episode tonight before 10 pm -- had a lot of trouble.  Made me wonder about taking him in... but did better with his episodes following.  L had a bad episode also where we took her to the shower room - then another lesser one before we went to bed (not 'til 2) -- also before we went to bed T had a terrible episode and vomited, and the vomit was reddish, but we think due to grape juice/cough syrup or ketchup (or all 3).  She afterward fell asleep on the couch, then went back to bed when we went to bed.  At least a few more episodes through night w/three youngest, most not to shower -- John took L (I think) to shower once." [I was fighting exhaustion and on the verge of illness myself just from that if nothing more.  Thankfully, John was home by now.]

May 22, day: "Littles continue to episode in daytime.  A, T and L still really bad, possibly growing worse.  We finally went to [children's hospital] Urgent Care at night to see what we should do for the children's coughs [I'd already read a ton online but wanted what I'd read confirmed and also I hoped there could be other good options -- feeling rather desperate].  The Dr. was kind of zany but bright and likable... [not] just an inside-the-box kind of guy.  He was actually fun to talk to and entertained the children w/his teasing.  [And he said his children are home educated!]  We had A and L tested for pertussis [they only had two test kits!] -- the nasopharyngeal swab wasn't fun to help them administer but that's how they do it.  One day or so for the antigen results, then 5-7 for the culture." [And we were told there's apparently nothing they can do for their breathing unless they are admitted to the hospital.  Abraham was the only one who scared us enough to wonder if he might get to the point of needing hospitalization.] 

May 22, night:  "We were at the Dr. way late, got home after midnight and Z esp. was very tired (all, really).  Getting out of the van half asleep she had a very nasty coughing fit and vomited in the yard.... T, Z, L and A all had coughing fits in the night a couple w/T going to the shower -- the tiredness of being out late may have set them back -- they should nap [tomorrow] and I should work toward some more really nourishing food for all."

To be continued...


  1. Wow! This exhausted me just reading it. I knew it was a trying time, but this gives me a little more detailed peek into just how scary it was.

  2. Thanks for posting this. Yes, it is exhausting. Even though everyone is well here, we're all still very very tired, even the older kids are hitting the sack early. We all lost weight too and a couple of my kids look a little grey and ashen.

  3. Awful. We haven't vaccinated Lily since she was about 4 months old, and Abigail hasn't had any. But this makes me want to run get them vaccinated for pertussis. :(

    1. I need to post the rest of this at some point. Yes, it was awful. It really made me realize that yes, there was an understandable reason why people wanted to develop this vaccine. It's not like chicken pox or even most people's experience of "the flu."

      It's not my intention to make anyone feel they should or shouldn't vaccinate, just to present the story as it was so people can get a realistic picture to aid them in their own decision making. It's really hard to get just an in-the-trenches realistic view of issues that are as polarizing as vaccination has become. I for one am grateful now that it's over that my children have a natural immunity to whooping cough, because that's the best kind, but the going through it to get it was not something I'd wish on someone. I think parents should (and should be free to) evaluate their children's unique circumstances along with the facts and make the best decisions the know how in light of these things concerning vaccinations, on a case-by-case basis.