Where I talk about febrile convulsions…again.
In the small hours of Wednesday morning, Ivy, who, for all intensive purposes has had a great month, spiked a temp and had a febrile convulsion.
It was only one.
My mummy head screamed to scoop her up and take her to the hospital but just as I was about to leave (It takes an hour to get to there) her post - ictal phase came to an end and she sat up, still febrile but alive, alert and awake.
Her day was typical of a not well child. She grumped and grizzled through the day, slept alot and ate and drank little.
But she was ok.
Again in the wee hours of this morning her temperature escalated quickly from a respectable 38.1 degrees to 39.8 degrees in a matter of minutes and she fitted again. This time for almost two minutes.
It was still only the one though. If it were two, I would have gone in, no question.
That sleepy, groggy time was longer and this time I had the bag in the car and the booster placed when she woke, felt my wet hair on her face and declared that I had had a shower.
I double dosed her with panadol and sat on her, staying awake, all night, for the second night in a row, knowing that we had an appointment with the paed at midday and praying that we could make it until then.
Of course, morning came and she was alot better. Her temperature hovering around the 38 degrees but upright and mobile.
I was not.
I was a train wreck.
Ivy played the good - little - moderately - sick - girl and I learned that she had bilateral otits media again and that the grommeted one was discharging (probably Staph) and the right one had perforated and was discharging in sympathy for its left sister. (Therefore giving us a site of infection). I learned that her heart rate was around the 150 beats per minute ( as opposed to the 160 - 180 she had been only a few hours earlier) I learned that the peeling, red rash on Ivy’s hands might be strep or it might be something entirely different.
I arrived at the paeds rooms with a need. After 48 hours of watching and worrying, I needed someone (namely the doctor) to make the decision for me.
Of course he didn’t, I mean, that isn’t his job. I have never had that expectation of him. I’ve always played the equality card, the we’re in this together line, I have never asked him to make any calls without my input.
Until today.
So when he put the decision firmly back into my hands as to whether Ivy needed admission to hospital or not I thrust my chin forward, put on my brave face and told him I would cope.
He gave me some guidelines (Duh moments, Dave calls them) like if I couldn’t wake her after a convulsion or if she had a high temp with no source of infection because when you are immune suppressed, you don’t tend to spike a temp until it’s late in the infection game. Definitely hospital worthy.
What of the times when she is like this though?
Ok in the day but tragically ill in the night time.
How do I make the call, how do I know whether to push on until morning or when to go?
When you are sleep deprived and can’t think?
I wanted some clear guidelines.
I wanted him to say, ok, if she gets to 39.9 go to hospital, if her heart rate is above 160bpm, go to hospital, if she is purple and pink with blue polkadots, take her to the hospital. A cheat sheet, if you will.
I didn’t get it and I shouldn’t have expected it.
After all, I’m her mother, I have to make that call.
I walked out (after being told I had to make regular appointments by the receptionist, that I was no longer allowed to have his lunch hours or his before hours, unless they were firmly booked in advance…’ and he is booked out until September, you know’) and completely lost it.
I made it to the carpark before I turned into a complete blubbery mess.
I sat in the car and howled.
I must have looked quite a sight to the pregnant women arriving for their antenatal check, or that old guy who stopped dead in the carpark just to have a good long stare at little old me.
Because that is what it was about.
Me.
I needed someone to just take care of me today.
To make it okay, you know?
I phoned David and cried to him, I drove down the road and cried to my friend.
Why?
I was tired, yes but I was also really confused.
Why did I balk at taking her to the hospital? She could be 48 hours into IV antibiotics now with a possible discharge tomorrow.
It’s such a hard call. Especially when you are too tired to function.
Am I overly emotional because I feel responsible for William’s death? Do I jump in too soon because of that?
I don’t want to be labelled as a mother who over reacts. I’m a nurse, who has worked in paeds and I know the kind of conversations that go on about the parents behind closed doors. I am realistic. I don’t want to be that Mum.
Am I waiting too long; because I’m a nurse, because I feel I can push it more, because I don’t want to be judged?
I hate grey areas.
Sadly there is hardly any black or white with the Ivy - girl.
I hate trying to make good decisions in a stressful situation.
Sadly, there are way too many of those at the moment, for Ivy and for me.
If she fits tonight we’ll go in. In my mind, if she gets to 39 degrees I’m taking her, I won’t question it, I’ll just go.
The paed says we cope too well and that is the trouble. Most people would have just taken her to the hospital before now.
I’m not sure how to feel about that statement. He could be reprimanding my call or he could be saying he thinks we do an ok job of dealing with the stuff that the girl throws our way. I guess it is his way of saying it’s ok to take her to the hospital, without having to make the final decision himself.
I’m too tired to work it out though.
Oh honey, I don’t think anything I can say would make you feel any better. I wish I didn’t live halfway around the world so I could be your shoulder
All my love xxxxx
(((hugs)))
I think you’re doing a wonderful job.
You are plain exhausted, mentally and physically, and I think your paed was paying you a compliment in the way you cope.
Ignore the receptionist, make as many weekly bookings as you can and if you need to see your paed in an emergency, sweetly tell her to cancel one of those bookings after she’s slipped you in for 5 mins time, coz it’s not like you’re asking for a consult on a grazed knee
Fingers crossed she doesn’t spike another temp tonight.
I think it would be very hard for him legally to make a call on temp alone and he probably trusts your judgement better than you do.
He knows your background. He can see how well you are caring for Ivy and how you fight for her.
I would take his comment as a compliment to your skills.
But oh how I get the “I’m too tired and I just want someone else to be in charge for a while” feeling.
Totally.
You are doing a great job and we all are in admiration of you.
Love
CB x
I am thinking of you. I wish I could say more, do more.
xx
I wish there was something I could do. I wish, I wish, I wish. And it’s really frustrating to be so separated by time and distance. I would so be there if I could.
Hugs…another shoulder here. I wish I lived closer too I would be there in an instant. I agree with Cellobella - take it as a compliment he trusts your judgement.Though I honestly am in awe of you for how you manage to do it .
Take care of your self too my friend taking Ivy to hospital isn’t over reacting.
You are not responsible for William’s death (hugs).
You are allowed to doubt, that must be only natural when the prize is so dear to you.
If in doubt, look for help.
Take care of yourself.
Ah, I am not usually crass (these days), but that receptionists proprietary behaviour really gives me the tom tits. She either wants to be him, or wants to do him, and neither are your problem. (Though I imagine if he allowed the latter and her metaphorical itch was scratched she may be less biatchy toward you…)
If he was fine about seeing you in his early morning or lunch break, then stuff her, and her little power trip. Likely she feels threatened by you, and I REALLY hope this helps you even a little bit to not be upset by her anymore.
But about dear Ives, I pray that she overcomes this bout of nasties, and we all have tremendous confidence in your ability to not only cope but handle whatever situation arises with intelligence and compassion. Because that’s what you do, all the time. And the doc does recognise that, and that’s what he meant by his comment. You are doing such a tops job.
Lots of ‘get better’ vibes to that beautiful girl today. And love to you all. xx
Oh, I wish I could come watch your kiddos so you could get some sleep! I know you’re exhausted, so I’m going to tell you this from the outside looking in– just so you have third party verification on this: YOU ARE AN AWESOME MOM, TRISH! Got it? Awesome. You’re doing MORE than a good job, OK? All that doubt wheeling around in your head? Chalk it up to extreme stress and profound sleep deprivation. You are working under circumstances that wouldn’t pass muster with the Geneva Convention, so you have license to feel pretty doggone pleased with yourself, OK?
And those gray areas — those are tough. They just about robbed me of my sanity too. I remember pleading for some definitive monitoring guidelines when Jacqui’s trach was reversed. We were sent home only 24 hours after her nearly coding in an MRI suite and she was still displaying stridor breathing. We only got the ‘extra’ 24 hours of hospital observation after I dug my heels in and hissed that a discharge would involve physically relocating my kicking screaming body to the curb. And I didn’t get my requested guidelines. I was told vague things like, “Well, if she turns blue, that’s obviously not good… and no, we will not allow her to be discharged with an oximeter.” That really clears things up. So helpful. Thanks.
So. I wrote out a list of signs and symptoms that I was not comfortable seeing in an un-hospitalized child. Any un-hospitalized child. Then I added some ones that specifically made me extra jumpy with Jacqui. And I’m not the sort that jumps easily. I Made my own hospital admission flow sheet. Because no one else would. Because it’s too hard to make that call of ‘do I or don’t I’ when I’m going on hour 42 sans sleep. I can still take vitals under those conditions, and read instructions, but that is about it.
Nurses aren’t allowed to work 48 hours straight for a reason, Tiff. We moms don’t get the luxury of set shifts but we inflict on ourselves a standard of perfect performance, 24/7. I’m here to tell you that you are doing the BEST possible job. The best, OK? And I think your Pead knows that too. If he doesn’t, you really need Ivy to be seen by someone with significantly more impressive observation skills. Praying that her temp stays down tonight and you get some much needed sleep!
Hugs to both of you!
Hugs for you. I agree, I think that what the Dr said is a compliment to you. And if the Dr thinks that you are coping too well, then why worry what the nurses think if you have to take her to the hospital.
I do know what you mean about wanting someone else to be in charge for a while - that’s hard when you feel like that. But you know your girl and what’s the norm for her - trust in your instinct. It will be right I’m sure.
I think that all Mothers want a ‘cheat sheet’ especially at 2 or 3 am Tiff. I would go to the hospital at 39.
I know that the paeds comment was definately a compliment..
Stupid arsed receptionist who the hell does she think she is?
((((((HUGS))))))
Tiff, you are an amazing woman. I am thinking of you and I cry with you as I read your posts.
I wish I could help you in some way.
All I can say is don’t ever be afraid of what someone else thinks. If in doubt, just go to the hospital. Especially with such a tired mind, you don’t want to have to think about it, just do it. I know you know what you’re doing, and you’re doing a brilliant job. I am sure the paed was giving you a compliment.
Best best wishes to Ivy girl. Hope you all had some good sleep last night. xoxoxoxo
hugs Tiff, I can only echo what everyone else has said already. I’d take the comment as a compliment and you are doing an awesome job!
Now, about that receptionist………. I happen to know someone with a penchant for knee capping people………. want me to send her to pay that receptionist cow a visit?
Next time (which there hopefully won’t be but maybe might be), cry in the Reception area. Don’t wait until you get to the car. It’s so hard to be “real” in front of other people but often it can be the best thing.
{{{HUGS}}} Hon. I don’t know how you’re doing all this. YOU. ARE. AMAZING!!!
{{{HUGS}}} to Ivy too. Poor little mite. Wish I had a magic wand.
Another person wishing they lived closer to you
You make as many appointments as you want - stuff that self-important receptionist!
I cannot imaging what it is like for you, with all you have been through, so I won’t patronize you by saying I know how you feel. The part I DO understand is the wanting someone else to take over and take care of you part
Lordy me how I could do with that occasionally!
Take care - and know we’re all thinking of you, and wishing you and the family all good things
Suze
xxxxxxxx
What a crap time you are having, what a crap, crap time. If you need a drive and a cup of tea, bring your washing as my machine will happily do it while you put your feet up and let the children play. x
I agree with everyone else that you are doing an awesome job…….but………….with a spiking temp AND discharging ears I think you should bypass that wimpy paed and go straight to the hospital. Ivy would get the necessary medication sooner rather than later and while she is there maybe you could catch a power nap or two.
The receptionist isn’t worthy of words.
Oh I cried for you reading that post….
I hate hate hate sitting there in the middle of the night counting my babies breaths and trying to decide if that sucking in on her neck is normal or worthy of a hospital dash. I so badly want someone to give me a rule, a guideline… I want a little fairy that pops up on my shoulder and says ‘now’….. now is the time to uproot the other two sleeping children, now is the time to go in the dark and the cold, now is the time when dragging the sick child out will make it better and not worse… now is the time…
and I don’t deal with anything even as remotely scary as you do…. my heart goes out to you…. and bloody hell I am going to punch that receptionist…
My heart goes out to you.
I wish I could make it ok for you.
If I was your pediatrician you could call me and I’d make that call.
I reassure parents that unless they went to medical school they aren’t a doctor and it’s okay to have us make that call.
It must be hard for you. I just said a little prayer for your family.
And I agree, he meant it as a compliment.
It’s a hard situation you’re in. You’re a mom who knows too much and a nurse who is emotionally attached to your patient. Pretend it’s your friend. Would you tell them to go to the hospital? Then take your own advice.