AIBU to feel totally traumatised by what happened in hospital last night(96 Posts)
Long post - sorry.
11 week old in hospital for 2 weeks receiving IV antibiotics. My ex isn’t on the scene so I’m here alone.
One of the antibiotics he’s on (gentamicin) involves a once daily 40ish minute drip through his cannula along with daily, painful heel-prick-and-squeeze-out-the-droplets-for-10-mins painful blood tests.
Last night the cannula he’d had for a few days failed (as they do) so we awaited the doctor to come and do another. For the record, although I hate to see him go through all of these procedures I’m very good at keeping calm and upbeat while they are going on, as sometimes it rubs off on the baby and he doesn’t cry. I think it makes it easier for him at any rate.
When she arrived the room was calm, and dark and quiet. I’ve managed to keep the baby asleep for some of the more invasive procedures before including a cannula insertion, and I was kind of hoping for the same (it was also circa 1am).
Doctor arrived, marching in, flinging door open, talking loudly to assistant, slammed on the light (this part is fair enough she has to see what she’d doing).
I asked her to keep her voice down, but she said loudly in a bullish manner that he was getting a cannula in and was going to wake up anyway. At this point he woke and I couldn’t keep him very calm for the procedure but it was over in a few mins. Dr asked her assistant ‘do you think that’s in properly’? Assistant confirmed yes, and off they went. Nurse made a passing comment to me about the doctor being the ‘head doctor’ (I think when she’d expected someone further down the hierarchy to come and do a procedure like this).
Nurse started the drip, I questioned why a different machine to usual was being used. I think she said something along the lines of the usual machine being ‘too sensitive’ but I may be remembering that bit wrong.
Immediately baby was unhappy. And very quickly became really unhappy. Angry, angry painful screaming. I picked him up, put him down. Tried to feed. Went out to nurses station. Tried to calm again. Alarm went off (this happened a few times and every time I had to put the baby down and get up push the call button myself to get the nurse to come). He grew more and more and more distraught. Nurse came in a few times, and I went out once. Machine alarm went off twice for ‘occlusion’.
By this time (about 20 mins into the procedure) the baby was fully distraught. I’d never seen him like that before. Alarm went off again. Again pushed the call. Nurse came in and I asked if she was sure something wasn’t wrong. That he was definitely in pain. She checked his cannula. His vein had blown and the antibiotic had been going into his tissue (we were on to the flush by this point so a fair bit had gone in the wrong way). His wee arm was bright red and ballooned up to his elbow. At this point she stopped the treatment and I picked up baby to comfort, he kind of ‘passed out’ immediately on me through trauma. I do this - if I’ve been very very upset I often immediately fall into a very deep sleep so I wasn't alarmed, but could see how much he'd been through.
By this point I was visibly upset (for the first time since we have been in hospital). The baby began to calm. A different doctor came in and said they were going to need to reinsert another cannula. By this point I felt like running out of the hospital with my baby, but desperately tried to get a grip. I requested (insisted) that there was calm and quiet in the room this time. Different doctor managed to get cannula in with me holding the baby and him not waking, which what what I'd been hoping for the first time but anyway…
His wee hand was still ballooned. I asked about it, and they said to ‘keep it elevated and keep an eye on it’. I asked what that meant (given that I am not medical and it was now 2am). Was told the nurse would come in to check.
At this point they left me, crying in a chair, in the dark, clutching my baby in the middle of the night.
After a while on my own I put him back in his cot (he was still in a really deep sleep) and made a little device to keep his arm elevated with a towel and some hair bobbles. I then had a meltdown on my own.
The nurse eventually came back and checked his hand at 0430 (I know she didn't come before this as I was still awake and watching him).
On top of all of that, googling on my own in the dark (never a good idea but by now I’ve lost all faith in the system) I’ve discovered that gentamicin has a pretty high incidence of a side effect of irreparable inner ear damage, hearing loss, and damage to the vestibular (balance) system. This has never been discussed with me. There is also anecdotes of people relating it to autism. Am trying not to listen to those.
No observations were done after the event (not sure if this would be standard but he had obviously been through a lot) nor have been done yet actually even though they are meant to be twice daily at 8am and 8pm.
AIBU to feel completely traumatised, weepy and shaky? I can’t actually look at the baby (guilt) and am completely unsure of what to do next.
I feel I wasn’t listened to the Dr in the first place when I asked for quiet and calm. I feel both myself and the baby weren’t listened to by the nurse when I questioned the different (less sensitive) machine being used and then again when we were both trying in our different ways to tell her something was very wrong, I feel we were deserted by all of them in the middle of the night after a really horrible experience and I feel like the fairly high incidence of damaging side effects very not discussed with me.
And I don’t know what to do now. I have no medical knowledge. Do I ask for a new antibiotic? He's got a bad infection and it needs to be treated.
I feel completely weak, undermined and powerless and can't even imagine talking to the doctor this morning, never mind being managing to be assertive.
YANBU. The machines are sensitive for a reason. I hope your baby recovers soon.
I didn't want to read and run.
I'm so sorry that you had this experience. It's terrifying when your baby is sick and devastating when they're in pain.
I'm not sure what you should ask for, but if you see the doctor again I think you should tell her how he actions affected you and your child.
That sounds awful. You poor thing. I really hope your little one recovers quickly. Look after yourself too
Do you have anyone who could come in and give you a bit of support? Your mum or a friend?
Perhaps write down your concerns so you don't forg
I'm so sorry, OP You're sound like an amazing mum btw.
I experienced similar to this when my Dsis was in hospital and unconscious for several weeks, some of the nurses and drs seemed deliberately vindictive and so uncaring. Is there a PALS phone number for your your hospital? Call them and talk to them. IME talking to the ward staff will not help at all, unless there is a particularly kind consultant.
I hope you & your baby are home soon.
Could you see PALs and complain about it?
It seems very unnecessary what they have done
Sorry- baby bit me whilst bf!
Write down your concerns so you don't forget to mention them all and speak to a different doctor- not the one you are angry with.
It sounds very stressful. Hope you baby feels better soon.
I'm so sorry you had such a stressful experience. I can't comment on the other aspects but with regards to the vein blowing - I've had this as an adult and want to reassure you that it felt odd and slightly uncomfortable (I had a balloon hand) but it wasn't painful. So hopefully your DS wasn't in pain with it.
Have you got much support or is it just you and your DS at the moment?
Op I have no medical knowledge so cannot comment on what happened but just wanted to wish you and baby well, it sounds traumatic.
Firstly, how horrible for you and your baby I had a vein blow during an IV infusion a few weeks ago. It was agony, but once the infusion stopped, the pain did pass quickly. The swelling will just be fluid trapped in the tissues and will recede.
Secondly - the (small) risk of deafness with gentomycin are very well-known to medics and they will be monitoring the dosage very carefully because of this. It is likely that it is the very best antibiotic for your baby and that the benefits far outweigh the risks. They may well have not wanted to worry you with this, but do discuss it further with them.
If you didn't feel you were listened to by the doctor, do ask to speak with someone from PALS or the patient liaison team. They're great people and will listen to what you have to say and investigate appropriately. You will not be thought of as 'a problem' if you do it. You're in the shittest situation a mother can be in and the more feedback the hospital staff can get to help you, the better.
I hope your baby gets better soon
That sounds really traumatic.
Is anyone coming in to support you today - family or friends?
For now you need to concentrate on getting your baby well again.
But I'd also be asking a few more questions about the "sensitive" machine, and how often obs are supposed to be carried out and whether there's going to be some kind of incident report about what happened.
Try and make a note of what you're told, and photograph any observation charts in the room as you may wish to put in a formal complaint once you're in a better position.
Hope your baby is in the mend and home soon.
There will be a PALS office in the building. You can phone or go to them and discuss what happened. They will help you navigate a way forward.
I have also had (well it was my DM) a terrible experience in hospital where another patient attacked the patient opposite my mum and the call bell was ignored. I emailed the chief executive of the hospital. And the chief nurse and every man and his dog to get it sorted. It was sorted so quickly you wouldn't catch your breath. There are things you can do. (Emailing the chief exec was pretty drastic but I felt I had no choice-I'm not sure you need to do this, but I would definitely speak to PALS today.)
You are also able to get the medics treating your baby to come and speak to you about the treatment and whether you're happy with the risks vs. the benefits. In order to decide you need the info on the risks.
I hope your baby is better soon, and I hope you're ok too. Do you have any RL support?
PS Everything from paracetamol to excess of stale room air is 'linked' to autism. Step away from Google swiftly whenever you see alleged 'causes' of autism!
YANBU. I would take this further. Get the serial numbers of both machines.
I really want to come and hug you. I was in hospital in isolation with my first when he was 2 wks old with suspected meningitis. It was scary and very lonely.
Nurses don't have time, Dr don't have time.
When are rounds? Get yourself the questions you want to ask and write them down then try and pin the dr down when they come around.
You poor thing that sounds horrible. I hope you have someone with you today.
Fwiw it sounds like you've handled it all well.
I do think you should contact PALS as pp have said.
And I would put in a complaint about this doctor. Your little one must have been in agony! I've had a "tissued" cannula before and it was incredibly painful - fortunately I am big and loud and able to tell the nurse (who had told the doctor it was tissued in the first place, but he insisted it wasn't) so I got it sorted immediately. Sorry - I know you don't want to hear about how much he has suffered, but you know he has and this should be taken further.
Even if there are no further problems Re: hearing etc, your baby should not have been put through this.
I do hope that your LO recovers quickly - it is harrowing to see your child ill and you must be exhausted as well as distressed over this awful incident.
I know it's hard, but f you can, try to get some sleep (hospital chairs aren't the most comfy, I know) so that you can be alert when you need to be there for him to feed and change and comfort him etc. You will wake up if he needs you - your subconscious is amazingly alert for your baby's cry.
YANBU, that sounds awful. Unfortunately not all doctors have a good bedside manner, but the hospital should address that.
I would second the idea you talk to PALS
No, you should def complain about this if only to get some reassurance and an explanation. PALs are the people to speak to. Ask them to come to you if you can't leave the baby. Also talk to every nurse who comes in about what happened and what their opinion is and keep on about your baby's arm until someone looks at it and gives you a good explanation of what happened and how it will have affected them.
The nursing staff should listen to your concerns and give you as much information as you need. Ask them about the arm, what happened, will there have been any long term damage, and what are the side affects of the antibiotic.
Google is not your friend in times like this. Medicines do not cause autism - that has a genetic cause and is already present at birth (though dc aren't diagnosed until much later as traits don't appear until later).
You must speak up if only to stop this happening to another child and it not going so well the next time.
Ask if there is a hospital play specialist? An actual specialist rather than a member of the play team. They deal with how to calm and reassure children during a procedure and the reasons for this etc. They might be in a good place to speak to the dr
At 11 weeks old, giraffe...? Skin to skin (plus or minus boob if BFing) with mum during all procedures is surely all a tiny baby needs during procedures at this age.
it's outrageous they didn't check that they'd inserted it correctly, especially as they mustn't have been sure since the question about whether or not it was inserted correctly was asked! I've had it happen to me but the blowing up of my hand was evident after a minute - they ought to have taken better care of an 11 week old baby, please complain when you have the time. Do you have any back-up you can call upon to be there with you? Fingers crossed for your DS, poor little mite.
That sounds awful, OP - you poor thing.
I don't have much time to post, but just wanted to reassure you a bit about the gentamicin. My son has had countless doses of this (he had leukaemia and had repeated infections) and had to have a hearing test when he finished treatment to ensure he had no damage. There is a risk of hearing loss, but it is a small risk and generally only seen with chronic use of gentamicin - like with my son who had it repeatedly over a three year period.
I hope you get some reassurance today.
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