AIBU to feel totally traumatised by what happened in hospital last night

[BrightonExGoth]

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.

So

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.

[phuckingphonics]

Just wanted to chime in with support. My daughter was born with a clotting disorder and was like a pin cushion for weeks with junior doctors prodding her trying to get a vein and even when they did get one the samples kept clotting. I had a bit of a melt down and refused to bring her back to in to be subjected to more of the same (I was at low ebb with a traumatic birth and dd being on nicu for a week). Anyway they promised me if I came in they would have "Ann" waiting for me. Ann was a nurse practitioner in her 60s and it was a revelation. She got the blood quickly and with tears, calmed me right down on the process and used this wonderful stuff called sweet-ease they babies can suck off your finger of soother which is as effective as narcotics for pain relief.

You sound like a lovely Mother! I hope you get some results today

[TheGruffaloMother]

You've had a rough time

I agree with Sloth. It's really important to keep in mind that cannulas tissue frequently through no fault of medical staff and that venous access in small babies is incredibly difficult. The equipment is smaller, veins are smaller, cries aren't necessarily related to an in situ cannula, etc. I'm not sure what your worry is about the machine being swapped?

Glad you've taken advice on board not to consult Dr Google! The doctors really will have weighed up the risks and benefits. Not only will they have been careful to prescribe a therapeutic dose, but the nurses will not hesitate to second guess their dosing and check it against the BNF if they're uncomfortable.

That said, it sounds like there has been a bit of a breakdown in communication here, and that alone is worth getting PALS involved for.

Hope your DD is on the mend.

[paediatricsaremything]

Just to add there is also a national shortage of paediatric registrars many are leaving the profession, a fried was saying out of 8 paeds registrars she knows 4 have chucked it in two have left medicine all together and two have gone to non clinical work.
Not all doctors/nurses have good communication skills. Some doctors/nurses have good communication skills most of the time but have a bad moment, day, at night paediatric doctors in many district general hospitals are offering covering A and E labour ward maternity SCUBU and and any paediatric wards. They due to the shortage are often locums frequently on with inexperienced junior staff, and a consultant at home on the end of the phone. I'm not saying what you went through was right but I don't think anyone has any idea about what ridiculous pressure we're all working under. In the last two weeks I have walked into offices and seen three junior doctors in tears, struggling with the pressures, I have never seen this in 35 years we have six nurses of sick with MH problems everyone is at their wits end.

[ElphabaTheGreen]

paediatrics I hear you - I am NHS staff myself.

But PALS, if worth their salt, work with both the patients and the staff. They are fully aware of the pressures we work under and are aware that patients and families can catch us in 'off' moments, or their perceptions of us are coloured by the terrible things they're experiencing at the time.

I don't think the OP should be put off using PALS as a sounding board. Sometimes just articulating to an empathetic listener is all that is needed, without expecting, or resulting in, repercussions for staff.

[JillyBoel]

This is horrible - please do complain to PALS about this doctor. I do understand that the (wonderful) NHS is insanely overstretched, but issues can't be fixed if they aren't ever brought to light. You may feel very vulnerable right now, however, so don't feel like you have to do it now - you can make a complaint after you get your baby home.

My DD was in hospital for 4 months after she was born (micro prem) and had constant cannulas/heel pricks/medication (including gentomycin several times btw, with no long-term effects), and one thing I learnt was that a good bedside manner isn't just a "nice-to-have", it's a clinical necessity. If you trust your HCP, you are calm, which helps keep your baby calm, which speeds and assists their rate of recovery.

Remember as well that he is YOUR BABY - if you feel like you don't have enough information to understand what's happening, keep asking questions until someone explains it properly.

[TiredMumToTwo]

I have been in and out of hospital with my son since birth and have had numerous courses of IVs so recognised a lot of what you said in your post. My advice would be to get some support for you in the hospital - partner, your Mum whatever works. Having a baby in hospital is incredibly stressful and whilst you're looking after the baby somebody needs to be looking after you. IVs and canulars are horrendous things but some work and some don't, the doc didn't necessarily do anything wrong or not check properly. Sometimes IVs can be painful if they are pushed through too quickly or if the liquid is too cold, occlusions are very common so I think the nurses perhaps should have inspected your baby's arm more thoroughly but I can understand if they missed it this one time. The doc didn't deal with your situation sensitively as you wanted to keep the calm environment for your baby but unfortunately some people are better at being more sensitive to these kind of things than others - docs included or she was just a bit of a dick! You are going through a really tough time and your little one is trooping through, keep looking after your little one and try and get some support for you - it'all be over soon.

[paediatricsaremything]

PALS complaints are investigated and recommendations might be made but these are totally meaningless, the bottom line is that there is no money left in the HNS and the majority of front line staff are working in impossible situations constantly and are now totally disillusioned. The vast majority of staff really care about the patients whether they be 1 old or 99 and want to give quality care but are now struggling to do this. As I said many are teetering on leaving small things push staff over the edge.

[BrightonExGoth]

Peadiatrics - thanks for that.

It's good to hear the other side. Like I said it's really easy to lose perspective in this tiny room (cell) and think that everyone is 'against us'.

One thing I will mention is that whilst I have seen the staff rushed off their feet during the night and have actually been really impressed by their efficiency, this did not appear to be the case last night for the nurses. I could see and hear them chatting sitting at the nurses station for a long time after the event. I even opened the door to my room a little to see if I could hear anything (paranoia had well and truly set in). I also had to express and deliver milk to the kitchen and they were still sat around then and I think they would have seen how upset I was when I did this.

Also when the alarm on the machine was going off repeatedly and I was pushing the call button/going to the nurses station, the nurse giving the treatment came out of a the office each time, so whilst she might have been busy doing something she wasn't treating another patient. From the baby's reaction I think the vein had blown by the time treatment started (maybe at the point of insertion...the doctor did ask her colleague) and I feel so guilty that he went through that pain for 20 mins completely unnecessarily.

I'm just so sad that it's happened and am already dreading the blood test tonight.

As for the side effects part of it though...I've made my peace with that. That was just another layer of middle of the night madness.

I have lost a bit of faith, and the doctor still hasn't been round. Do you imagine they will have written up that the vein blew in his notes? I don't want the results of the blood test tonight to be skewed by the fact that they think he got a full dose. A lot of it went in, but the flush still had about 12 mins to go when they stopped.

[BrightonExGoth]

I do think it might be good to talk to someone about it. PALS or the ward manager. Not to kick off, but I do feel like the situation was not managed well, and it would make me feel better to register that.

[BrightonExGoth]

Thank you so much for all the solidarity parents who have been through similar. It definitely helps to know that others have come out the other side!!

[Meemolly]

My daughter was in hospital for 5 nights when she was 18 months old. It was terrible seeing her so poorly, and I vividly remember how difficult it was. I think you are doing amazingly. I hope she gets better soon and I hope you have time after it is over to look after you.xx

[Loz1975]

I went through exactly this in July with my daughter. She is nine. Cannula popped five times, every single time was like Groundhog Day trying to get them to listen to me that she wouldn't cry if it was in the vein properly.
This is a little girl who's had pneumonia three times and never cried with cannula before or having her injections. She was being treated for something (skin related) which after four days I insisted they stop treatment as she was so traumatised turned out negative anyway and she'd had the strong antibiotics being pumped into her tissues (not veins as it kept popping) for nothing.

She has exactly the same skin condition again, I've worked out what she has, taken her off topical steroids and she's going through withdrawal which isn't pleasant but you can see her skin improving every day.

Please insist on knowing why he's on iv antibiotics , what exactly they are treating, ask to see the positive test results and ask what is the worst case scenario if you stop treatment , obviously you must weigh up the risks of that against his trauma.
I feel for you, been through it so many times and nine times out of ten her own immune system would have fought it anyway but hindsight is a wonderful thing.

Hope he's well soon and home v soon .

[Sunflowerspread]

I'm so sorry OP. I know you've had a lot of the same advice, but I didn't want to read and run. My baby was in care for a little while so I know how it is.

I worked for many years in the NHS. It's a fantastic service, but sometimes this slips and you are absolutely right to share a concern. See the PALS services, make an appointment and bring someone with you if you can. You can then decide whether to make a formal complaint, but even if you don't, you can make a 'lower level' complaint just be outlining this and speaking to the PALS person who is usually very nice and helpful.

You've already recorded here what happened - can you put it down in a relatively clear, point by point way on an A4 sheet? With dates and times. It might help to have a couple of sentences just saying what you'd have liked to have happened differently. And also a brief sentence on how it made you feel.

If you wanted, you could also point out any staff or incidences which were what you consider to be very good care. Often people don't get thanked and this can be just as useful as complaints for ensuring that 'good practice' is valued and upheld - sometimes those sterling staff can be such good role models for others.

The PALS person will discuss what the options are with you, and can pass this on to the team, or possibly a one to one session with a member of staff to go over any of your longer term concerns.

I know it must be very worrying time, I hope that this can help alleviate any extra worry and you can get back to spending time with your lovely baby.

[Tryingtostayyoung]

First of all
What a terrible terrible time your both having and I think it sounds like your doing a fab job at keeping calm and keeping your baby happy in what sounds like a horrible situation. I think you have every right to feel disappointed with what happened, this is exactly why it's so important to speak up when you feel something isn't right when it comes to our babies/children. At the end of the day mistakes happen but it sounds like this doctor had terrible bedside manner so I would definitely be making a complaint.
I wish your baby better and hope all goes well. Xxx

[Miserylovescompany2]

Hello OP, I'm sorry to hear you and your little one are having such a tough time. Just like others have suggested, contact PALS. I'm another one that finds her fingertips entering things in the Google search engine...

I do know that the doctors and nurses have lots of paperwork to do as well as doing the physical side of the job. So, sometimes it's very easy to misconstrue would they are doing.

I had a week long stay with a 2.5YO whilst 38 weeks pregnant with my second. I felt as if it was going slowly insane, the same four walls seemed as if they were closing in. That was almost 12 years ago, we were on a ward.

I wish your little one a speedy recovery.

If you are unsure of anything that is happening, then ask questions.

[Sunflowerspread]

I do see paediatrics point, I have worked in totally stressful conditions. It is horrible rushing and not being able to give the care you'd like.

However I would say that highlighting concerns, as well as thanking any good care - can be useful as it does highlight the situation. It's no good just hiding it. A good manager will take any reports, concerns or complaints and use it as a tool to fight for their team, politically or otherwise.

[RhodaBorrocks]

I'm really sorry you both had to go through that OP.

For what it's worth, I have previously worked for PALS. They would take your complaint seriously and investigate. Whilst it is true what paediatric said, PALS do understand that we're all working under pressure in the NHS, but that can't be used to excuse poor care. At worst, you'll get an apology, at best the doctor will be spoken to about their bedside manner and the staff will be reminded of the importance of attending to calls. But do bring it to their attention, it's very important for improving care and patient safety.

Hope your little one is feeling better soon.

[shinynewusername]

staffing demographics and numbers might be the real problem here

They are the real problem but, as HCPs, we can still opt to be kind. I say that as someone who trained in the bad old days of 100+ hour weeks. At one point I was the sole doctor in charge of over 80 patients, spread over 18 wards of the hospital, with my only support being a weekly consultant ward round. I say this not to score points about the bad old days being harder, just to make it clear that I totally understand how ground down staff are by when over-stretched all the time. It does affect your mood, your behaviour and your empathy.

However, we might as well give up now if we don't at least try our best to be kind and empathic to patients and parents. It doesn't take any longer or need any more effort to say, "Sorry that I'm putting the light on but I think I'll have the best chance of getting the cannula in first time with better lighting." The opposite in fact - the more relaxed the patient/parent, the easier to get the procedure done.

[stealtheatingtunnocks]

I've been where you are, and it is incredibly isolating.

Ask if there is a family support team. Our kid's hospital has an amazing organisation which liase between parents, medics, school, social work, help fill out benefit forms and arrange emergency support. They also provide cups of tea and time to get off the ward, knowing that someone is with your kid.

You sound very tired. I'm not saying that what happened is acceptable, but, getting some support saved my sanity. And, I had no idea it was available to me from the ward.

Hope your wee one's brighter soon.

[TheNameIsBarbara]

I am not an NHS worker but I completely agree with Paediatrics

Gentamicin is a toxic antibiotic hence why your little one is getting daily bloods. They are obviously using that antibiotic as it is the right antibiotic for whatever infection your little one has, the bloods will help determine the accurate levels and that it isn't too toxic. FWIW my child regularly has antibiotics which are known for their toxicity, and it is unlikely that you would get any side effects with one course, and daily level checks.

Same with the cannula, they do tissue regularly and it is annoying but it won't be how it was inserted, more to do with the fact that cannulas don't last long in babies (or adults) and those bloody infusion machines can be too sensitive - we've often had our machines swapped out for another one. Personally I would ask for a long line to be inserted - as they tend to last longer but it will be more difficult to insert (especially on a tiny one) but it will give you longevity, however again it will likely be inserted by the head doctor you have already encountered.

Hospitals are by their very nature noisy and unsettling places - I assume from the age and type of illness you have your own room? This probably means that you can get away from the noise, but if a procedure needs to be done, then it is necessary and probably will wake your baby.

I have spent a lot of time in hospitals (and as a result have made a couple of PALS complaints) but I can't see what you would have to complain about. However, I would advise getting some support in as I can imagine you aren't getting a break and probably haven't eaten much or slept at all.

Two weeks of antibiotics is hard work so please remember to look after yourself as well as your baby, and I hope your baby is feeling better soon x

[jacks11]

As an HCP, I think you need to speak to the staff about what you feel went wrong last night. Cannulae can, and do, tissue even when inserted properly. The issue is with how you feel your were treated and the concerns you had which you feel were not addressed. Did the nurse check the line/cannula when the alarms went off? Agree that if you are asked to "keep an eye on it" then you should have been told what to look for.

Re the gentamicin- these side-effects are indeed well known but generally only occur when the levels in the blood reach too high a level. The reason the bloods tests are done so regularly will not just be to check to see how he is responding to medication/whether the infection is being tackled etc- they will also be checking the gentamicin levels to ensure that these do not become to high. The levels also allow them to calculate the frequency of dosing and so on. If these are being done properly the risks of serious side-effects are minimal. That said, if you are really concerned then speak to his consultant and explain your concerns.

[BrightonExGoth]

I spoke to the ward manager, not to make a complaint against anyone in particular, just to register that I'd been really upset, that I 'd like quiet, calm voices during invasive procedures (especially if the baby is already asleep), and that I want the more sensitive machine to be used in the future.

I really do appreciate the NHS and its staff, and understand the huge pressure everyone is under (oldest friend is actually a nurse).

Whilst I do agree with what you are saying Draylon, having experienced this particular incident 1st hand though I don't get the impression that the nurses were too overstretched to apply better checks that it waist properly or to look after us afterwards. I've been here a while and have witnessed the ebb and flow and last night was not particularly busy as for did have the chance to sit and chat.

And as for bedside manner, whilst I can appreciate stress can play a role in diminishing levels of patience, I got the impression from interaction during the remainder of time it took to insert the cannula that it was not really a quick snap response, more just that she felt dismissive about the idea that I could possibly keep him asleep while she did it.