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.

[FairyAnn]

I would definitely speak to PALS if there is a station at the hospital

[Wombletor]

Yanbu that was an awful experience. Look up the PALS contact at the hospital and speak to them asap. Take care

[TinklyLittleLaugh]

Nothing helpful to add, but I just wanted to say that I am in awe of your strength. Your baby is a lucky kid to have you looking out for him. I hope he recovers soon and things get back to normal for you.

[Slothlikesundays]

I can understand that you're upset, cannula do tissue though, especially in small babies with tiny veins. As for googling side effects - - all medications come with side effects, just google the list for paracetamol. He effects of going deaf are if it is given too quickly. I'm sure you're aware that the risk/benefits have been weighed up and that your baby is only being given medication he needs. If you would like the side effects of each medication explaining ask. Although it sounds like you have enough to worry about at the moment. The internet is not your friend in instances like this. Ask the professionals. If you ask your babies consultant on ward round they should spend sometime explaining everything clearly for you. Hope your baby recovers soon, I can understand why you're so anxious and the middle of the night is the worst time.

[Daisyfrumps]

That's awful and do complain. Make particular note that the head doctor requires further training updates on communication and empathy, let alone her clinical skills.

[Slothlikesundays]

Oops I'm sorry forgot to add. With regards to bedside manner - definately mention to ward manager and discuss with pals. You shouldn't have had an experience like this and the area needs to know there is room for improvement.

[Olympiathequeen]

The fact your LO is in hospital and so ill is traumatising enough without people being so insensitive, but you shouldn't judge the treatment by one person. Be assured that they wouldn't give an antibiotic that wasn't needed and the bacteria were sensitive to it. DS1 had it as a newborn and he's fine.

Just day each day as it comes. It will get better and this time next year you will be enjoying a lovely Christmas and this a distant memory.

[Daisyfrumps]

Always consider the 'bra' acronym when a treatment is proposed. So you should be told the:

Benefits
Risks
Alternatives

Plus if you want to turn it to 'brain'

Instincts (yours and hcps)
Nothing (I.e what happens if we do nothing)

[ellequick]

So sorry that you're going through this OP. I had a lump in my throat reading as we had very similar experiences with our LO when he was a newborn. I echo what others have said- write it down. Get a notebook, write everything down. You'll forget times and doctors names and dates and names of medications and everything else if you don't.

I made a formal complaint to the hospital were were in and it had a very positive outcome- they changed a number of their policies as a direct outcome and it helps me to feel that other babies/children/anyone won't suffer the mistakes that our son did.

Also remember that in every profession there will be people who are excellent and suited to the role they are in, and people who are not. The first doctor was an absolute arse to not give you the smallest courtesy to help keep your baby calm throughout the stressful procedure. Unfortunately (in my own experience) it was no uncommon for cannulas to be fitted incorrectly and veins to blow, when they are so tiny and delicate.

You have no reason to feel guilty- you're doing the absolute best for your baby and what can you do if not have faith in the professionals there to help? I know you said your ex isn't around, have you got friends of family who can come and support you? You're going through a very stressful and upsetting thing and if you can have someone to help you (to allow you to get some rest, to also take into the vast information doctors and nurses and probably giving you) it will really help.

[MrsFinkelstein]

I can understand you are very upset. Unfortunately though cannulas do tissue frequently, especially in newborns as their veins are so tiny. The machines alarm all the time, sometimes when the vein has tissued, sometimes because the infusion line is kinked slightly, more often than not they alarm because they just do.

The swelling is excess fluid in the tissues and will subside quickly.

As sloth says, all medications have side effects, if you're unsure please speak to the staff. It's best to deal with a situation at the time, so speak to the staff about your concerns regarding last night and the Dr's attitude.

[BrightonExGoth]

OK - thanks very very much everyone. I feel slightly calmer after reading your responses.

It's really hard to get perspective in here. I spend so much time in this little room. I feel better knowing that the treatment was bad and my reaction fairly normal.

Thanks also to Elphaba, Oyster and Sloth for the reality check re googling side effects. I needed that. I was just at a loss of what to do on my own in the middle of the night and felt so disempowered that I had to do something. I will try to calm about the side effects element. Especially the ones founded in no medical evidence!! I do know better.

I do have support thank you. I'm just on my own through the night.

I didn't know about PALS. Thank you for the advice re. this. I'm going to wait for doctors rounds today and then find out how to contact them to take this further.

Thanks again everyone. I do feel a little better for your solidarity.

[BillSykesDog]

I have experience working on projects in the NHS (I've mentioned it on here before). Often these were 'mopping up' projects after quite serious complaints including ones which resulted in fatality.

What bothers me here is not bedside manner or antibiotics. I'm concerned about the machine, you being fobbed off when you queried which machine was being used, and alarms from the machine not being properly checked. I'm wondering if use of incorrect machinery might have contributed to the situation. Get the serial numbers, and if you can write down what you can remember about settings used and if they were checked before use. Could they have hooked him up to the machine assuming it was just set correctly because it had already been used on him when actually it wasn't cause they'd used the wrong machine?

[MatildaTheCat]

Hugs to you. Get some outside support if at all possible.

I know the cannula needed to be replaced which was probably why this all happened at night which makes everything much worse but have a chat with the senior nurse on duty and explain how distressed both you and your baby were and ask for her to explain it all to you. I also agree about the machinery and it doesn't sound as if you were properly listened to at any point and that is plain wrong, especially in paediatrics.

[hanban89]

This is horrible poor you and baba. I am actually tearful reading this.
They really should have checked it had been inserted properly. And the doctors bedside manner is terrible. All the paediatricians I've dealt with have been much more understanding, but I suppose some just think the job is just the medical stuff. But it's not and you should be a people person. Especially when dealing with an infant.
I hope your baby recovers quickly.

[OneOrgasmicBirthPlease]

Oh, BrightonExGoth, I really feel for you. I has a similar experience when my PFB was in hospital at just two weeks old with a kidney infection. Hands down one of the most upsetting times, I could not be in the same room while they cannulated his fat baby arms because I was a sobbing mess. I felt such a failure. I think you are doing amazingly well, your baby is so lucky you are able to keep it so calm and happy while the doctors are doing invasive procedures. I was about as useful as a chocolate teapot and I am married to a medic who cannulates tiny babies several times a day! You are not at all unreasonable for feeling traumatised, it is a shame nobody could offer you support at such a stressful time.

I also had a tissued cannula as an adult once, and though not pleasant, it really was not that bad and healed fine. Unfortunately, it happens to the best of us.

Please do not worry about the antibiotics - one of the reasons why your baby is having daily blood tests is to determine whether the levels of gentamicin are safe for its hearing. Decades ago, my sister was treated with it in hospital as an 8 month old, which probably saved her life. She is now a strapping 6ft tall young woman.

I really hope all of this becomes a distant memory for you very soon. The best thing is, your baby won't recall a thing. Bon courage!

[ChristmasPeace]

OP, try not to worry about the antibiotics. I've given IV Gent over the years and nobody had any ill effects.

When a new venflon is inserted, someone should flush it with about 5ml saline to check it doesn't tissue.

Were staff just coming and restarting the machine everytime the IV infusion alarmed? If so, that's pretty negligent. If it says occlusion the first thing you think is that the line is kinked or the venflon tissued. What you don't do is ignore it! If they didn't investigate properly , I'd say that's something to raise with the ward manager.

You're in a hard place and very vulnerable. I hate it that you're not getting adequate support. I am sure there will be some staff that hate it too. But hang in there. These antibiotics work reasonably quickly and before you know it, it will all hopefully be a distant memory for you all.

By the way, the reason you elevate the hand is to help the tissue recover faster, because you're helping fluid to drain away by using gravity. They should've explained that to you, it only takes 10 seconds to impart that information.

[lozzylizzy]

I can't get past the fact that you was left to make a contraption to keep your baby's arm elevated, shouldn't they be doing that with something safe for an eleven week old to sleep with!

[shovetheholly]

I'm so sorry you have been through this. You must be absolutely exhausted. It sounds very scary - particularly as you are handling this on your own. Is there anyone you can get to come in and give you a bit of moral support - a kickass friend, a parent, a sibling?

There has clearly been a failure of communication here. Your wish for calm, and your repeated requests for help, were both ignored. I don't think you should have been left on your own to handle this when you were clearly upset either. Someone should have sat with you and made sure you were OK.

I think the other thing is that there is a tendency amongst medical professionals to minimize a mistake with an attitude of "Oh, well this wasn't a SIGNIFICANT error". Actually, all errors are significant, because they impact on the trust that the patient has in the system to get things right. By the end of three operations in hospital with multiple such errors, I absolutely insisted on being given a written list of every drug I was going to be given, and checking them all against the medical literature. It was exhausting (particularly when I was unwell), but I just didn't feel like I was in safe hands at all.

I wonder if it isn't time to update some of the policies regarding communication to patients about the exact type and dosage of medicines being given, as well as a more detailed breakdown of the risks and benefits. I do think quite a few people now have the ability to process quite high-level scientific information even if they aren't trained in that area, and this should be offered if requested. I am fed up of doctors and nurses lying or talking down to people.

[BrightonExGoth]

This forum is such a lifeline at times like this.

Thank you all so much.

[shinynewusername]

Sorry this has been so stressful. Just on the gentamicin point, the hospital will have tested which antibiotics can kill your DS's infection by growing the germs in the lab and then trying different antibiotics on them. They wouldn't be giving gentamicin if it wasn't necessary. And it is a very safe drug overall (all antibiotics can have side-effects) so try not to worry about that.

[SuperRainbows]

I think you are doing a great job looking after your baby. Last night sounds traumatic. Hope things are a bit brighter today.

[Justaboy]

Make particular note that the head doctor requires further training updates on communication and empathy, let alone her clinical skills.

Seems like the perfect storm here Goth! Middle of the night, staff perhaps tired themselves Dr here not on his her best behavior balls up with the machine, etc, etc.

Had that happen to me as well different scenario they didn't understand why I went red and mauve all over whist in a coma but shit happens;!

But really very together mum I must say.

Well done to you for going through that:-)

And coping!

[paediatricsaremything]

I don't usually comment on these types of threads but will this time. Gentamycin is indeed toxic and can cause side effects, the blood taken from your baby heal everyday is to check the level is within safe limits. No Dr prescribes gentamicin because he can't be bothered to prescribe something less toxic its used because the bacteria found growing somewhere in your baby's system (I'm assuming your baby has septicaemia) are sensitive to gentamicin and that the risks of the side effects are outweighed by the benefits e.g.he'll get better.
Gentamycin in children has to be infused this can either by done using a syringe driver or an infusion pump, we use both depending in whats available at that moment.
Cannulas are often difficult to insert in small babies, often they require more senior doctors with more experience and sometimes once inserted its not always clear if it is in. In your case it does sound like the cannula tissued eary on in the infusion and thats why it was painful, gentamicin does irritate the vein and surrounding tissue and cause this type of reaction. Personally I think that more care/observations should have been taken once it was obvious that your baby was distressed and the sight should have been checked to see of the cannula had tissued. When this happens where I work the nursing staff complete an "IR1" a reporting mechanism for when things go wrong or we have a near miss which will result in an investigation. But I have to say (I can only speak for where I work), we have no staff, and then amongst the ones we do have there is a terrible problem with staff mix, often the vast majority are very inexperienced/newly qualified with just one experienced nurse looking after lots of critically unwell children and running the ward, we are all looking after too many children at once so sadly and incorrectly often staff don't have time to be more vigilant.
With regard to noise we have this a lot, it is irritating but I doubt it was intentional I think you have to remember at night its easy for staff to forget that our patients/children want to sleep and that its night time whilst we are working like we would in the day time trying to keep ourselves awake.
Obviously you can take you complaint to PALS (I regularly encourage patients to do this) but sadly I think the only major difference it will make is that another disillusioned nurse will leave, many nurses are teetering in the edge of going utterly disillusioned and stressed and complaints whether they are right or wrong are the thing that pushes them over. Alternatively have a chat with the ward manager or the nurse looking after you today an discuss your concerns.

[Momentumista]

This sounds awful - I am so sorry and feel for you hugely. Just wanted to send a hug and really hope baby is better soon.
Dr's attitude/ bedside manner / sensitivity sounds appalling btw, I would be tempted to complain.

[MariamaMay]

As others have said already - contact PALS - Patient Advice and Liaison Service. Sorry you had such a rough night. I do hope you and little one are feeling calmer today. Hope you are both back home real soon.