Showing posts with label NHS. Show all posts
Showing posts with label NHS. Show all posts

Monday, 2 September 2013

Back to B11

It's been an interesting and eventful few days for us as a family. Wednesday brought Foz's day off and the afternoon found us at home having some dinner before a planned trip to the park. We left Bee watching CBeebies as Foz brought the washing in off the line and I nipped upstairs. We'd recently got Bee some new George Pig bedding and Bee was very excited as Daddy was bringing it in off the line.

I started downstairs a few minutes later to find Bee halfway up, unattended dragging her George Pig duvet cover behind her saying "me bed, me bed". She wanted to put it on her bed. I said her name and asked her to wait there, stay there, panicked even though I knew she was capable of climbing the stairs. It was the bedding that worried me. 

As I shouted her her feet got tangled and she lost her balance, falling face-first down the stairs. I screamed and dashed down after her, nowhere near able to make it in time and she hit the bottom with her shoulder and the side of her face. I was horrified and screamed for Foz, who came running out of the garden. I picked her up and thankfully she was hysterical (and not unconscious) but her nose was bleeding and a lump was forming on her temple. I was concerned about broken bones and we agreed a trip to A&E was necessary.


Foz held her on his knee, trying to calm her down as I dashed about packing a bag with all the essentials. Within 10 minutes we were in the car and making the 10 minute drive to the hospital, feeling like the worst parents that ever were or will be.

A&E booked us in and we went sent down to Children's A&E to wait for the doctor. Of course once we got there and Bee saw all the toys all she wanted to do was play. Typical. I've lost count of how many times I've said to a doctor "she is ill...honest!"

 After a couple of hours of waiting we were sent home with a head injury advice sheet and a warning to keep an eye on her, like we wouldn't! As she hadn't been knocked unconscious they weren't too worried about concussion and she had brightened up during the wait, even though she was still a little quiet. We took her home and kept her up for the required 2 hours before Foz put her to bed.

The following morning, Thursday,  Bee woke, seemingly o.k but as the day wore on I could tell she wasn't herself. She was quiet and wobbly on her feet, had a very snotty nose with a cough and kept stumbling. Her temperature was on the rise too. Still, there was nothing concrete to justify taking her back to see a doctor so she had some medicine and went to bed at the usual time. 

Just past Midnight I went up to bed and popped my head in to check on her. She was surprisingly already awake and so I went in, sitting with her a while and stroking her hand. She was very hot and snuffly, letting out the odd little cough. After 10 minutes or so she started making the sound that I know means imminent vomit so I sat her up and shouted Foz, who came up with wipes and other necessities. She was sick everywhere and as I stroked her back for comfort she suddenly went rigid and almost flung herself back onto the bed, her eyes bulging and not focused, her arms and legs jerking with spasms shaking her whole little body. She wasn't drawing breath. Foz and I panicked, him trying to hold her to stop her hurting herself on the metal frame of her bed and me screaming her name. I ended up clapping as loud as I could in her face, it was all I could think of to stop her. The whole thing lasted about 10-15 seconds but it felt like a lifetime, those moments where my daughter wasn't breathing and I had no idea what to do, I was helpless. 

After she snapped out of it she was hysterical. Foz and I didn't even have to say anything to each other, he started to comfort her and get her changed from the sick-covered pyjamas and I rushed around packing another bag for A&E. We were on the road by 12:40am, making the 10 minute trip. All kinds were going through my mind, my main concern was that the bump to her head had caused some kind of brain damage. Looking back it was probably a silly fear but I'd never seen her like that, never seen anything so terrifying. 

We were seen fairly quickly at the hospital, although the main A&E was busy there aren't many children need emergency care at that time in the morning. Thankfully it was the same doctor as the day before so we didn't have to try and explain everything, just what had happened that evening. He was concerned and after giving us some Calpol to put down her tube to bring her temperature down he arranged a bed on the ward.

We made the long trek up the corridor to the Children's Ward where we were lucky enough to have a whole 6-bed bay to ourselves. I'd been worried about sharing the space, as mentioned in previous posts, Bee doesn't really understand appropiate behaviour in certain situations and we would have found it very difficult (virtually impossible) to keep her quiet in respect of children & parents around her sleeping. As far as we're aware Bee doesn't know how to whisper. 

By the time the on-call doctor had been round and Bee was able to sleep without being poked and prodded it was getting on for 3:30am. We were all shattered and I left Bee sleeping to take Foz home, he was supposed to be at work in just over 5 hours! We hit McDonalds on the way home, both starving and I stayed at home long enough to eat it with him before heading back to my sleeping Bee on the ward. By this time it was getting on for 5am and as they were due to wake her then anyway (every 2 hours is standard precaution for a head injury) I paced the ward trying to stay awake. Once the check was done, she woke quickly and was alert, both she and I were able to sleep. I curled up in the uncomfortable chair next to her bed, padded it out with pillows and tried to get some sleep.

Home comforts can make all the difference
I was up again by 7am, when the shift change came in. Nurses don;t make any allowances for people sleeping and the ward gets noisy very early. Thankfully Bee slept on, the poor kid was exhausted, so I sat and quietly read my Kindle, waiting for breakfast to come round. My girl must have the nose of a bloodhound as she started to stir just as the breakfast trolley made it to the bay next to ours.

Two plates of toast, a cup of tea for Mama and some CBeebies later and Bee was looking a little brighter. Her raging temperature was gone and she was more alert.



Of course Bee wasn't happy to watch CBeebies in her cot for long so it was off to the play room, which has had a revamp since we were last in-patients. It's very hard to convince a doctor that your child is ill when she's doing this....


Around 10am the doctor came and had a chat with me. The diagnosis: Bee had a febrile seizure brought on her by very high temperature. It was nothing to do with her fall from the day before, it was simply a coincidence.

As heart complications are common in children with Kabuki Syndrome and seizures can be related to that the doctor ordered an ECG for Bee, just to be on the safe side. It came back perfectly clear and we were allowed to go home. 


Having her ECG
We are aware though that seizures can suddenly manifest in older children with Kabuki Syndrome and it's something that we need to keep an eye on. Should she have another one and there's no high temperature we'll have to go back for further tests. As it is we're on the waiting list for another EEG due to her little 'absences', moments of tuning-out.

Overall it's been a very stressful and worrying few days but Bee has come through it all fine, just a graze on her nose, a bump on her head and a bit of a cough & cold. Thankfully she'll be ready for the start of school on Tuesday, she's such a little soldier.

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I want to add here that our NHS is a very important institution in this country. We've needed a lot of support for Bee since her birth and it's always been there for us, without charge. We've always received the best of care and have met some wonderful medical professionals along the way. Sometimes, when headlines like 'hospital lets patients die in corridor' etc hit the news it's easy to forget that these are isolated incidents in a huge network of healthcare that supports our entire nation using world class training, techniques and equipment FOR FREE.

It doesn't seem to really be penetrating the public consciousness yet but the current Conservative government is attempting the sly, secretive dismantling of the NHS and it's very important that every UK citizen who cherishes what we have gets behind the campaign to save it from privatisation.

This is something that is very important to me.

You can find more information here:




Friday, 10 May 2013

Watch and Wait

We've been back for our review appointment at A&E for Bee's ganglion cyst. The doctor has confirmed that the diagnosis was correct and, barring it getting significantly larger or becoming painful, then it's just a watch-and-wait policy. Which we're happy to do if it means no more trouble or discomfort for Bee when it's not really necessary.

Friday, 19 April 2013

Another Day, Another Trip to A&E

Well, one thing we can never say about life with Bee is that it's uneventful!

This morning, while getting Bee ready for nursery I noticed a small lump on her inner wrist. Immediately I panicked. It looked just like a bone sticking out, as if she'd broken it. I wracked my brain trying to think when she'd had a significant fall recently or shown any pain or discomfort but nothing seemed to fit. Bee stumbles a lot due to her gross motor delay and hypotonia but she hadn't had a major fall in a couple of weeks.

I gingerly pressed at the area around it and Bee didn't react at all so I tried gently touching the lump. Nothing. No tears, no cringe, no reaction at all. It felt fairly hard but still yielded, not like bone. All kind of thoughts went through my head. The first (ridiculously) was a tumor but then, I couldn't think when I'd heard of a tumor on the wrist. So then maybe a fatty lump or cyst or some kind? But I wasn't sure if that happened in children.

Bee was still asking for nursery and as she didn't seem to be in any pain and was moving her hand freely I decided to pop in and ask the advice of her teachers. It's a nightmare getting a GP's appointment.

On arrival all said it was unusual but as she wasn't in any pain and was off playing with the toys they were happy for her to stay and would ring me with any problems. I decided to go home, pack a bag and take her to A&E after nursery.

So:
Milk, syringes & tube....check
Nappies, wipes & creme....check
 Spare clothes....check
Pyjamas & slippers....check
 Toys....check
Laptop & DVD's....check

It sounds a lot but from grim experience we go in expecting it to be a few hours and end up being admitted, sometimes for days on end. These days I always go well prepared: a small bag with nappies, toys & things for the day plus a suitcase stored in the car with extra things for a longer stay.

After collecting Bee from an uneventful morning at nursery we headed straight to A&E at our local hospital. After booking us in the lady at reception asked if we knew our was to the children's section of A&E. Do we ever! We're so well known in the children's ward that we're always greeted by name and all the staff are really pleased to see Bee. Today was no different, a lovely nurse on duty was someone we'd seen many times during Bee's various stays and she was happy to see the big changes in Bee since her last visit.

We had an initial consultation with the doctor, who asked lots of questions and examined Bee's wrist. She agreed that Bee wasn't in pain or discomfort and had a full range of movement so it was extremely unlikely to be a break. She said it was most likely a ganglion cyst, which is harmless, but just to be on the safe side she would send us to get some xrays done then take another look. So, back into the waiting room until we were called to radiology. 


Bee loves the waiting room. It's full of exciting new toys and books, not to mention other people to nosey over. She became particularly entranced by a teenage girl dressed in school PE gear and with a cut over her eye. After slowly walking back and forth past her a few times, slyly watching her out of the corner of her eye, Bee finally plucked up the courage to stand in front of the girl, point and tell me "uh oh". Thankfully the girl and her dad weren't offended and laughed about it. A few times in the next hour of waiting the girl went away, maybe for the toilet or the vending machines and each time Bee went over to her empty chair, had a good examine of it just to make sure she was definitely gone, then turned to the dad and asked "where is? Where is?" I laughed and laughed. It's not at all like Bee to be comfortable with strangers and her concern about the health and whereabouts of the teenager was lovely. 

We waited about an hour for Bee's xrays. During that time I googled 'ganglion cyst' and found that they are indeed harmless, although can be painful and sometimes need surgical removal. From my reading it appeared they were most common in adults and I could find very little except for various posts on parent forums for ganglion cysts in toddlers. The webpages I browsed seemed to conclude they were generally caused by repetitive strain or injury, which didn't seem to fit with Bee and they could go away on their own. Sometimes, if they didn't disappear or became painful they could be drained of the fluid with a needle or surgically removed under anesthetic. Slightly worrying.

Bee's xrays were not fun. Bee will not voluntarily sit still and certainly would not understand to keep her hand still on an xray plate so I had to sit her on my knee and clamp her arm in the right position. Not a great experience. Bee struggled and cried but it was a neccessary evil and it was over fairly quickly. To calm her tears the radiographer offered Bee an 'I've been brave' sticker and, to Bee's complete joy, a Peppa Pig certificate! Honestly it was like flicking a switch. The tears stopped, the smile came out and she was joyful little Bee again.

So back to the ward to await a doctor's perusal of her xrays and diagnosis of her wrist. It was another hour or so before we were seen again, this time by a different doctor. She'd looked at Bee's xrays and there's definitely no break or fracture and the most likely diagnosis is a ganglion cyst. The doctor said she'd never seen one in a child as young as Bee and would like us to go back and see a consultant in a week's time. Which we're happy to do but it is a little worrying. If it's just a harmless cyst that should go away on it's own why do we need to go back and see a consultant? At least we'll only have a week to wait and find out.