7 yo still in hospital, just saying 'hi' fo... - Meningitis Now

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7 yo still in hospital, just saying 'hi' for now

Smallestofthetribe profile image

Hey

As my son is still in hospital I will just say hi for now.

We know it's BM caused by Group A Streptococcus but still waiting for results on whether or not the GAS also went into the spinal fluid. Early days but recovery is promising so far.

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Smallestofthetribe profile image
Smallestofthetribe
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9 Replies
misswinky34 profile image
misswinky34

hello, back 🖐 my son just had BM but he was only 20 days old. Your son will probably have long term IV therapy usually about 21 days. Hope your all holding up, you sounds like your doing better than i did at this stage! 👍

let us know how he gets on ❤

Smallestofthetribe profile image
Smallestofthetribe in reply to misswinky34

Thanks for the 👋 how is your son recovering now?

I think that my little warrior has been incredibly lucky, there's no doubt that we know how much worse this could have been 😢. Everything happened so quickly.

The lumbar puncture shows that the GAS entered the spinal fluid.

He's making great progress considering. I have to remind myself it's slow and steady that counts.

Building warrior strength back up is a challenge but I raise warriors and this smallest tribe member is going to be back on track really soon 💪👊

misswinky34 profile image
misswinky34 in reply to Smallestofthetribe

he is a fighter like yours, and hes also our smallest tribe member, there were times when i would have given anything to be going through that instead of him. I'm envious of him in the sense that he won't remember it, wheras it still affects me on a daily basis, 6 months on. And your right, things could have been much worse. We had people on our ward who had lost their limbs, and worse. we won't know for sure how with my little one if/how there will be any lasting damage until he reaches his usual baby milestones, but were hopeful. He had sone meningitis follow up yesterday that looked promising. So I'm hoping for the best. Will your son be having IV antibiotic? They will likely put a line in, so they aren't having to keep trying to canulate. After a week in hospital we were allowed home leave, and came home for a few hours each day and then back for infusions. From start to finish it was about 2 months before we finally took that exhale. I know some children can sometimes have to learn to do things again mobility wise, whereas with my boy he didn't get chance to learn them in the first place. Do they know where hes picked it up from? For me that was the scariest part, it was never pinpointed how it got into Charlie's system. And trying to prevent something when you don't know where it came from is terrifying👎

Smallestofthetribe profile image
Smallestofthetribe in reply to misswinky34

It's so true, he won't remember but you will and in graphic detail. I said to a friend yesterday that I wouldn't be surprised if both patient and carer don't have some kind of PTSD. Are you or have you had any support for yourself?

He was admitted last Thursday afternoon last week and by 2am was on IV antibiotics as they found group A Streptococcus in one of the good tests. Bless him he had a fair few cannulas fitted but we are just wearing one now. Drip and heart monitors came off Monday/ Tuesday.

He has a pocket of fluid in his sinus that may have started the GAS but then he had sores in his nose that were improving with fungal cream so perhaps they were the cause.

It's apparently quite rare for this combination but he's got it nevertheless.

Currently he's on 3 antibiotics and a nose drop to clear the sinus. Just had more ECG as there was also concerns over heart rhythm but I think he's ok.

Appetite is coming back very slowly but he is really tired and doesn't want to get out of bed unless he absolutely has too.

brmarichal profile image
brmarichal

In my case my 3 years old boy was at hospital for a month. Streptococcus pneumoniae 19 A. Vancomycin + Ceftriaxone for 10 days followed by linezolid + cefepime+ another one for 20 days. They detected a sinusal blockade that induced bradycardia. Now he is almost normal after 3 weeks of recovery. He is running again with some balance issues, but improving. Audition lost in one side. In our case, no brain damage were detected in image tests. But this bacteria was extremely aggressive and multi resistant.

I hope your little angel improves soon and I'm sure he'll be back at home with your company, support and love

Smallestofthetribe profile image
Smallestofthetribe in reply to brmarichal

Wow! It's all so scary and I'm only just finding my voice in terms of understanding what meds are what. Thanks for sharing your experience.

Hospital environment is bizarre in terms of real time. I'm finding it ok but also a battle of not resigning myself to bringing too much stuff. We have a cool bag full of drinks and a snack bag full to burst. Thankfully I can pop to the local supermarket to top up.

It's difficult to manage my own expectations - tricky when I'm the least impatient person I know!

One of my concerns beyond the physical impact is making sure he is mentally ok.

misswinky34 profile image
misswinky34

i don't blame him. Yes i was offered support from my health visitor bit never got round to the counselling sessions because then my husband got very ill soon after. So it went on the back burner.i still think i need it if I'm honest. I was not agreeing with what the gp said because i fell into the post natal depression category which i am not, I'm not depressed I'm simply trying to get over the most dreadful thing to ever happen. It's more a deep rooted fear of it repeating itself, I'm a little bit OCD with germs and am very protective of my baby in public and pretty much wrap him up in cotton wool every chance i get. I'm pretty sure i will be on my way to a nervous breakdown once he can crawl and i can't keep him clean 😬

its interesting you mention his minor infection. he was born with forceps, which squished one side of his head, and was treated for an eye infection shortly after being discharged. They have said this may have been an entry point, with it travelling to his brain and spinal cord St the speed it did. I know germs didn't cause it, but i need to feel like beyond this i can control the risk. Essentially i feel like i didn't protect him, even though that's my only job ☹

its difficult territory with a baby, because he does still tire very easily, but so does any six month old! It's hard to guage what's normal baby behaviour and lingering meningitis symptoms. Some days hes exhausted. Some days hes full of beans. And that's what I've learned- to take it day by day. It will be the same with your son. It's a long road. And may be frustrated at learning his limitations. do you have other children? that was very hard too because i only saw my other two half an hour a day. Very hard. All my time was spent with my little one, i felt so bad for them. Were like peas In a.pod, and they went from the disruption of a newborn, to the nightmare of meningitis and having their mum half an hour a day. ☹ i wouldn't wish it on my worse enemy.

you sound like you've got your head screwed on hun, and I'm sure together your going to get through it just fine. Is he taking a probiotc? Some of the antibiotics cab be brutal on stomachs, i know alot of people that don't get offered it say you should ask the doctors about them? Xx

Smallestofthetribe profile image
Smallestofthetribe in reply to misswinky34

Definitely push for some support or it will spoil all the amazing times ahead. self care is majorly important anyway but we rarely do this for ourselves, me included. I'm hanging on to the holiday we have booked at the end of august to visit my very oldest friend in Portugal with my son because I know she will make sure we relax.

Yeah, I think I may up the ranks when he's back home and absolutely over protective lioness will kick in! I'm acutely aware that I can be quite relaxed about a small sore up a nose or temperature and have no doubt that will change from here on.

I do have older kids, much older at 27 & 22 so I'm lucky they aren't depending on me.

Promise yourself that you will follow up on support. You owe it to yourself and your family.

StrawberryCream profile image
StrawberryCream in reply to misswinky34

I am thinking that you are in the uk? If you contact Meningitis Now they offer various support services including funding some counselling sessions. Helpline no: Freephone 0808 80 10 388

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