Full story of Tink's asthma attack

[TinkerBellesMum]

On Friday Tink started with the runs. I was at antenatal, she went through the last nappy I had with me, so I called her dad to come out and bring me some. In the meantime I left her with just a T-shirt on, she's fairly potty trained anyway so I wasn't worried about leaving her without a nappy. She then passed wind and covered the waiting room in watery-pooh The MW's were great and said I needed to get her to my GP.

Get there and she covers their waiting room in vomit! GP checks her over and when she's feeling her tummy is a little concerned about the breath rate so counts them. She's over 60, she is tugging (got dips at the little v on her throat and the base of her breastbone) and her temperature is 38.6. She says she's not too worried about the D&V as there is a bug going round, but she's not happy with the breathing. She gave her ten puffs of blue to try and slow it down and sends us into the waiting room while she sees the next patient. She called us back and she's no better, in fact she's gone from playing on the slide before we went in first time to lying in my arms. She rings ahead to The Children's A&E and gives me a letter for the paediatrtion.

(Here comes the bit I'm not happy about)

Mum picked me up from the GP, she gave the letter to the receptionist (who didn't open it), she took Tink's name and address and told us to sit down (didn't ask what was wrong). Mum told her that Tink wasn't well, the GP had called ahead because she was breathing too fast and she had failed to slow it down and that we needed to be seen urgently. Receptionist said "no he hasn't". A nurse then spoke to us, read the letter and said we'd be called into Triage soon. Triage saw us, her O2 level was down, her heartrate was up and her Temp was now 39.4. Tink wouldn't allow them to give her Calpol, if she opened her mouth it was to stick her tongue out! Nurse said we were priority and would be called through quickly. We were left for 1 hour and 20 minutes in the waiting room, her tempature and heart rate were rising and O2 dropping, she became more and more lifeless. We kept asking how long it would be because we could see her disappearing before our eyes.

She was put onto a monitor which she kept setting off as they couldn't get enough oxygen into her and her heartrate was swinging between 130 and 215. She was nebulised almost constantly for three hours when her O2 levels stayed above 94. They took her to observation as she was too ill to go to a ward. Mum took me home and TBD stayed with her. They continued to nebulise her and around 3:30 she was taken to another hospital.

The plan had been to nebulise her every two hours moving to four hours by last night and giving her inhalers over night so that she could come home tonight. By last night she was still on 2 hourly and it was reduced to hourly. They finally got it to 4 hourly this afternoon and she's now on inhalers over night with a plan to come home tomorrow night if she is responding.

I'm planning on going into the first hospital to speak to PALS as I'm not happy about being made to wait so long with an obviously sick toddler who had been sent by the GP and had gotten worse between leaving the surgery and being triaged.

[Ewe]

How worrying for you, I hope do hope she is ok, sounds like she is getting there slowly.

It sounds like the hospital have been appalling, I think you are totally right in complaining, they should not have made you wait so long with such a visibly ill child. I would have been going NUTS so well done for keeping your composure!

Hope Tink is home soon

[onwardandupward]

how are you all doing tbm?

[TinkerBellesMum]

She managed well with the inhalers over night and they were happy to send her home Monday. She is still very full of infection and still being weaned off the inhalers, hopefully tomorrow she will be down to normal inhalers, although they have quadrupled her brown (she's gone from one puff of 50 twice a day to two puffs of 100 twice a day).

I've just had an appointment come through today for the specialist. I told them that I don't want her to be going back to just seeing the asthma nurse at the GP's because having an attack like this once a month is not acceptable, especially as each one is worse than the last.

She has spent the week sleeping, probably making up for being woken ever hour or two over the weekend! Yesterday we fell asleep during Grey's Anatomy, I woke up after Home & Away, fell back asleep and we eventually woke up around 3:30 (goodness knows how long that was! I think 4 hours ) and she's still going to bed around 8pm as normal.

She's back at the childminders today, they've really missed her and were calling all weekend to see how she was doing. They tell me all the time she is a gem and last week when they had her for a day while she was ill they said even then she was really good. She told me once she is the best child they've ever had [proud mummy emote]

She's staying with my parents for a couple of weeks for various reasons - with my back it's getting difficult for me to get around and she needs carrying more now, we also think she would get better better there and it gives us some space to sort the flat out and give things a really good clean as we're stressing about everything that could get to her. She's going to Malta next week (we were going too but I will be past viable and that's not a time I want to be away from my consultant!) with my parents and I'm hoping the better weather may help her. I've got to write a letter for my parents to take so they can be prepared if there is an emergency.

[NorthernLurker]

Did you mention your concerns about A&E to the staff on the ward who cared for her? from conversations I've had about GP admissions to paeds I would have thought they would be livid about her waiting so long without being seen by them.
hope she improves soon and has a great time away.

[TinkerBellesMum]

We did keep asking them how long it would be, we made a lot of fuss, but we haven't complained to them, at the time we were too worried about Tink. I didn't realise how long we'd been there until I saw the whiteboard that we'd been there since 16:20 and it was currently 17:40.

[Jojay]

God how terrifying for you both - and I agree the hospital were completely out of order to keep you waiting so long, especially as the GP did so much to try to ensure you were seen quickly. I hope you get a decent apology.

I'm so glad she's on the mend now - how old is she?

I've been dying to find someone I can talk 'asthma' with!!! - DS ( 22 months) seems to be getting worse and worse at the moment. His isn't thought to be allergy related, but he always gets bad if he has a cold or flu-ey type virus. He's on 2 puffs of Beclazone 50 twice daily (just been cut down from 1 puff of Bec 200 twice daily) and he's just started on 1 puff of Seravent twice daily, as well as ventolin as and when necessary, up to 10-12 puffs at a time. He had an attack on Tuesday and had to have the steroid tablets and antibiotics for a chest infection too

It scares the hell out of me when you read the blurb that comes with the inhalers, when it says 'Not suitable for children' or 'not suitable for children under 4', but what can you do? It's awful when he has an attack, he looks so pale and kind of grey

Anyway, I'll stop waffling, sorry for hijack

[PatsyCline]

You poor thing. My DD2 has ongoing resp problems, so I do know how awful it can be watching them go downhill.

I hope that Tinks gets our of hospital soon, bless her.

Patsy

[misdee]

that is bloody terrible!

dd1 is asthmatic (d2 as well, but dd1 is more affected). our GP has a neb there, and twice i have taken her there to use it rather than a+e as its closer and quicker t be seen there. but they wil lalways transfer her if need be.

have never had to wait in a and e with a wheezey/chesty child. always get taken straight through.

[coppertop]

It's terrible that they made dd wait so long.

In our area the GP sends children with asthma difficulties to the children's assessment unit rather than to A&E. It seems to speed things up a bit and the staff are far more experienced.

Our A&E staff aren't that great with children IME (probably why the GP bypasses them completely!). When I took my dd there when she was having difficulty breathing (not asthma-related) the triage nurse seemed to think I was overreacting by bringing dd in - until the doctor discovered that dd's oxygen levels were in the low 80s.

Jojay - Poor little ds It's difficult when they are so young, isn't it? My 2 boys were found to be asthmatic when they were toddlers. Fingers crossed for you that they are able to find the right combination and doseage for your ds. xx

[TinkerBellesMum]

Just rung PALS, she's going to chase it up and said that she will give them till Tuesday to deal with it before she actually goes round there and gets an answer personally.

I have to say one of the worst things about it was having an ambulance background (I was trained with the voluntary ambulances but haven't been involved for awhile because life has gotten in the way) so knowing how to read an oximeter and knowing she was heading towards a heart attack. That might sound dramatic, but people don't die of an asthma attack, it's the secondary effect on the heart.

Jojay, she's 26 months. She was a 31 weeker, rapid progression so no steroids and they had to intubate so she was already prone without adding in family history on both sides! It's rare to get a diagnosis under 2 because usually that young they grow out of it, but they said that monthly visits and 5 bouts each of croup and bronchiolitis ("You can only get bronchiolitis/croup once" ) I demanded that they admit she was asthmatic. I got GP and paed to say it in one day. I'm very fortunate with Tink that she likes to take her medication! The only baby through the NNU that liked both Dalivit and Sytron, the most they get is liking one and hating the other, when I tell them at other places she liked both they're shocked. She also likes those pink steroids they have to dissolve. Montelukast she thinks are sweets and we have to hide it because she throws a tantrum if she can't have one lol!

I think my GP does have a nebuliser, but she didn't seem to bad in herself at the time so she went for the Ventolin first, when that didn't work she thought she would be best off going straight to A&E. Last time we were in A&E they said to call an ambulance if 10 puffs didn't work.

[TinkerBellesMum]

Coppertop, we went to The Birmingham Children's Hospital, supposed to be one of the best children's hospitals in the country!

Low 80s is dreadful! Normal range is 96-98, it's unusual to get over that without someone being on pure oxygen or a nebuliser, low 90s is bad. I bet she was tugging and you were counting ribs by that point.

[Jojay]

Thanks coppertop and TBM - I know asthma / wheeziness / whatever they want to call it at this stage, is very common, but I don't know any other kids with it, so it's nice to know that DS is not alone.

Our GP will call it 'asthma' now, after tiptoing around for a bit. We haven't had to see a paed yet, touch wood, as our GP and out of hours GP have a nebuliser, which has always done the trick so far. I really hope he'll grow out of it - childhood asthma is common in my family, and most, but not all, have grown out of it.

As you say, we'll have to keep tweaking his medication until we find the right combination for him.

It's fab that Tink likes all her drugs so much!! DS is pretty good with the puffers, but getting the soluble steroids into him can be a challenge. I don't think he hates them, rather that when he's bad he has no appetite for anything, and trying to make him drink is tough! He loves Amoxycillin (sp?) though!!

[madlentileater]

Hi TBM, you have all my sympathies we have been through this many times with DS1 and DD1, (many years ago now, thank goodness) to cheer you up i will say once they are about 3 and can co-operate taking inhlers, you don't often get hospitalised.
BUT, you have received very bad care, here they have a nebuliser in the surgery, and when I have called GP out at night, they have been able to arrange over phone for direct admission to children's ward. Can't imagine how they could bypass your LO after Triage nurse saw the situation. Make a fuss.

[TinkerBellesMum]

Amoxicillin - "BANANA MED-SIN!"

Apparently, if I understand it right, the lungs don't grow like other parts of the body, they grow new bits. So damage that has been caused from intubation, infection etc that causes the asthma in infants becomes a smaller part of their lungs so has less effect on them as time goes by. TBD said they told him her lungs are scarred from all the previous infections, as each attack is getting worse I'm slightly concerned that the scarring is getting worse with each one rather than getting better as she grows.

We've had a lot of tip-toeing too,I'm glad they've admitted it now!

Edit:

It's rare to get a diagnosis under 2 because usually that young they grow out of it, but they said that monthly visits and 5 bouts each of croup and bronchiolitis ("You can only get bronchiolitis/croup once" ) that they couldn't deny it anymore.

[misdee]

dd1 is currently on the soluable steroid tablets. we use small amount of water, dissolve the tab in it, then add a splash of squash.

when she was younger, i think i dissolved it in a syrienge for her (put the tablet in first then suck up the water needed). then followed with a drink.

[TinkerBellesMum]

She's always been very good at taking her inhalers, she even reminds me when to give them to her, but when she's not well she doesn't want anything around her face - which is understandable, I think, I'm sure that if they put me on a nebuliser and didn't tell me it would make me better I wouldn't want it!

[misdee]

we used to tell dd1 to breathe in the funny cloud when on a neb.

[TinkerBellesMum]

That's how we give those steroids. I prefer to do it in the syringe because I can be sure she gets it all. She doesn't need a drink after - she just asks for more! I love the reaction from nurses, they had me the syringe ready made, Tink snatches it off me, drains it (without pushing the plunger) and hands it back to the nurse looking puzzled! (Where's the rest?)

[PatsyCline]

I am very impressed by Tink's love of meds. The steroid tabs are our main challenge - we resort to a sugar mix.

It's great that PALs are taking action.

I would talk to your consultant about what happened if this might happen again and get his/her support. We had a terrible period with DD2 when she was very ill every couple of weeks and we now have open access to the paediatric assessment unit so that we can bypass the GP. The GP is very good but this saves time and we know when DD2 needs serious help. We have also been encouraged to call an ambulance rather than take DD2 in ourselves as the paramedics have her on oxygen straightaway and she is usually doing much better before she even reaches the hospital.

Patsy

[micku5]

I hope Tink is getting better..... she sounds like my dd (2 yrs old) with her love of medicine, she is currently on ventolin, Seretide, Montelukast and azithromycin - all for her asthma. Like you I had to fight for the doctors to admit she was asthmatic.

Unfortunately dd2 has Di George Syndrome - and partial immune system and so is prone to cold and infections which go straight to her chest and over the past 18-20 months has been hospitalised 18 times with either bronchiolitis (x2) pnemonia (x3) and other chest infections or breathing problems.

Our GP have been very good and they have loaned us a neb and we now also have oxygen at home that we use in an emergency (once only thank god) whilst we waited for an ambulance.

[TheOldestCat]

I'm astonished you weren't seen straight away at the hospital; I can understand how terrifying it was - we were taken straight into resusc when we rushed DD (22 months) into A&E last weekend. She is 'probably asthmatic', according to the GP, but it was a severe attack of croup, which didn't respond to steroids etc as usual.

Hope Tink is feeling much better now. DD loves medication too! Though she is less keen on the monitor they put on her toe

Micku5 - poor DD2 being hospitalised so frequently; glad to hear your GP is very good.

[PatsyCline]

Micku5, those meds sound very familiar! I think we are on 14/15 admissions with DD2. Luckily,my DD2 loves hospitals which makes things easier and we are also very lucky in that things are definitely getting easier as she gets older.

All those admissions (and the times that you manage to avoid admission) must be really tough on you and yours. I hope you are getting lots of great support at home.

Patsy

[micku5]

All the staff on the children's ward know her (she has open access to the ward) and when we see them out and about in town they are always pleased to see her and not in hospital.

Her consultants are pleased with the progress she is making, the azithromycin - long acting antibotics that she takes every 2 weeks has made a huge difference.

I am lucky that DH works from home so I have been able to stay with dd2 when she is in hospital and thankfully my friends and neighbours have pitched in with helping to look after dd1 when needed.

Patsy, sounds like your Gp's are on the ball too!

[TinkerBellesMum]

I avoided going onto the CONI programme with Tink, but I'm starting to think it might be a good idea with this one. CONI is care of next infant, it's for younger siblings of an angel baby. They give you an apnea monitor, a special nurse and a passport to the wards. I'm not so worried about the monitor or nurse, but having a passport would have been brilliant with Tink for all we've been through with her.

I'm going to wait till I've heard back from PALS before taking it further, they're unofficial complaints they try to deal with things without making it official, but they can change policies (for example the maternity hospital have had a telling about calling mid-T losses miscarriages after a conversation I had with a doctor) and work with them to make things better. I like that idea better than going straight to a complaint because I like to give people chance to answer to something and change without taking it that next step.

I think if I had noticed at home how bad she had got I would have called an ambulance for her, like you say getting the oxygen that much quicker can make a big difference and they might even take her in quicker from an ambulance. Because it was the GP who sent us I didn't even think of an ambulance, I wish I had. It does worry me that she got that bad and I hadn't even noticed.

TheOldestCat Tink has 26 months of practice of getting the oximeter off her foot and preventing them putting it on in the first place! It amazed me how this lifeless scrap can suddenly start fighting when they go for her toe or try to put a mask on her! She also knows how to fool the oximeter! Every time she set it off at the weekend and a nurse came in to check it she'd start laughing and take in enough oxygen to bring it back up!

[PatsyCline]

Azithromycin is brilliant stuff and very tasty!

I'd like to say that I always do the right thing at the right time, but I am sure that I often get it wrong. None of us are perfect - even medical staff - and I think it is great that you are giving them the chance to sort this out informally at first. We had a big problem with ambulance staff once (they couldn't check DD2's sats as they didn't have the right oximeter on board and tried to persuade me that she was fine. I literally begged them to take us in and when she was assessed she was on 86% and was then in hospital for a week.) Having spoken to ward staff it became clear that this was a funding issue with the organisation not the staff being incompetent and the Ambulance Service dealt with my complaint really well.

That really put me off getting an ambulance for a while until I got told off by the consultants. Mind you, I have also been told off by the Ambulance Service for telling them that my daughter needed an ambulance. They obviously think I am like Great Aunt Dorothy, who famously used to ring up the Ambulance Service when she ran out of gin because it was an emergency.

Patsy