Posted in Appointments

Precautionary

Poorly kids are the worst! 😭 Actually, I take that back… a 7 and a half hour wait in our local children’s A&E is the worst.

William hasn’t been feeling well since the end of February when he got his first (of many) cases for tonsillitis. Antibiotics didn’t clear it after the first dose finished so 5 days later we were back at doctors for a second dose. 3 days after the second dose ended he was still poorly so on Monday his dad and I took him back to the doctors (I feel like we’ve seen them that much recently that they’re going to invite us round for dinner at Christmas 😳) the doctor said he was fine but tonsils still a bit sore but no longer infected, the give him pain relief and he would be fine.

Fast forward to Friday and I have to take him to chemist as he has conjunctivitis because let’s be honest, it never rains, its pours 🌧 Drops received and starting to be administered, let bare in mind that my shoulder has gone again so I’m fine this one handed… its not easy even with two hands. Friday evening William was lethargic, hot to touch and clingy and he had barely eaten or drank all day…Not to mention the waterfall of slimy vomit that came out of his mouth and all over me. Honestly it’s like my kid aims for me when he’s sick 😫

Like any parent I was worried and ring my own mom for advice and then rang 111 who told me to take him into A&E as soon as possible as a precaution. Luckily I have some amazing friends who are used to being on standby when it comes to getting William places in a hurry.

We arrived at A&E at 8.15pm. It was busy, super busy. Kids were screaming, adults were moaning really loudly about how long they had been waiting etc. One parent told me it was going to be a 5 hours wait… she was wrong 😭

I want to talk about the waiting room, firstly the chairs are not built for 7 and a half hour waits with a gimpy arm. But that’s not my gripe… my issue is how unfriendly the waiting room is for a child like William. The lights are super bright and loud, some of them were flickering.the waiting room is busy with colour. Lots of different colours and sparkly fish hanging from the ceiling and the air con is loud. For an autistic child with sensory processing disorder that is a lot to take in for a lengthy period of time. It’s a difficult wait for most children but I’m sure other towns have sensory rooms for children like William. I’m almost sure the eye hospital next door has one or were at least trying to raise funds for one. It was also a nightmare that only one person could accompany each child, I understand that there is a limit on space but William needs to be restrained to be examined and unfortunately its not ideal with two arms let alone one.

Anyway that’s my moan over… the nurses who triaged us were brilliant. So patient with William and understanding. The doctor we saw was also amazing. Thankfully William just has a viral infection which will pass with calpol and time and even though the wait was long and painful I’m glad we went. I’m glad I made the 111 call and followed their advice because really you just never know with any child what is wrong but when they can’t tell you, it’s so much worse.

Hopefully he will be better soon and can enjoy his last 2 days of nursery next week. 🤞

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Posted in Causes

Behind the eyes

As many of you may have read previously William has been at the Hull Eye Hospital a few times to check his eyesight.

When children lack eye contact, depth perception and hand eye coordination the word autism doesn’t automatically spring to mind. Doctors and healthcare professionals will try to rule out any other issues and William’s visit to the Eye Hospital was one of his first exploratory check ups.

I want to tell you about the Hull Eye Hospital and how brilliant they have been with us. The staff are all so welcoming and were knowledgeable on how to deal with a child like William, they had a slew of highly engaging toys in order to try and get him to look in the right directions so they could look at his eyes. The waiting room for children however leaves a lot to be desired which is a big reason for my post but we will get to that. They make the most of the area they have and fill it with toys and books and sometimes very noisy children waiting for theirs or their siblings appointments. This atmosphere for children like William isn’t ideal but it is still much better than most places offer.

Hospital Chief Finance Officer, Lee Bond, is going to be doing something that some of us only dream about… well in my case have nightmares about, exercise!!! To be more precise he is planning on running the London Marathon, that’s 26.22 miles. Unless my math is exceptionally wrong (a high possibility) that works out on average if you were to walk it 52,440 steps

His goal is to raise £10,000. This will enable the opening of a sensory room for children with additional needs attending the Eye Hospital at Hull Royal Infirmary. The marathon is 5 months away (granted it has been postponed as should have been April I believe) they are only 59% towards the target which I’m hopefully can change quickly in the coming months.

For us as his parents any appointment brings upon anxiety and irrational thoughts. ‘What if he’s blind?’ ‘How will he handle wearing glasses?’ Etc etc… however as you are probably aware William’s eyesight is fine although he is due another check up before he can be discharged.If it brings anxiety out in us can you imagine how the child feels? An unknown clinical place, strangers and odd smells, waiting around without your usual security blankets (William’s are currently our metal egg poacher, his changing mat or the dog) Imagine not understanding why you are in this odd place or why people are trying to force eye contact upon you when you don’t want it and never have. Waving pictures your face and holding you still.

A sensory room could lessen the trauma for patients like William. There are multiple types of sensory rooms however the main focus is to help children feel comfortable and calm, explore in a safe environment and engage childrens sense. I think we could all use one in our workplaces or even right now in our ‘home offices’ also known in our house as a baby changing table next to a window.

Please think about any savings you have made whilst we have been on lockdown and try to dig deep to support such a wonderful cause that will help so many! So I implore you, please spare anything you can and use the link below to donate. X

https://uk.virginmoneygiving.com/charity-web/charity/displayCharityCampaignPage.action?charityCampaignUrl=HullEyeHospitalSensoryRoom

Posted in Appointments

In Black and White

A Nasty Reaction

I feel like I need to put a little bit of context into the above photo; whilst visiting Williams Big Nanna (my Nanna) like we do every Sunday he had a little red spot on his hand and 2 on his face that seemed to have appeared out of nowhere. As the day went on a few more appeared but he was fine within himself. Dave took him to the pharmacy in the morning as he had a few on his feet too… ‘Hand, Foot and Mouth’ they said. They can’t be wrong can they? We kept him off nursery as we know how contagious it can be.

On the Wednesday whilst I was at work the rash had spread all over his little body and the boy was itching which doesn’t usually happen when children have Hand, Foot & Mouth. Dave called 111 for some advice and they sent paramedics to our house who decided to blue light him to Hull Royal Infirmary. Dave didn’t call to tell me…

I rang him during my lunch to find out how William was and he said he was waiting to get the boy checked over as his rash is was worse. ‘what times the appointment with the doctor?’ he wasn’t at the doctors, ‘are you at the walk in?’ No.
He told me where he was and that everything was fine and was sat in childrens a&e waiting to be checked out, he didn’t mention the ambulance. ‘Do I need to leave work?’ No he was fine and just getting checked over and then they will be home.

I updated Debs and the Hobmans… Me, My Mum and Sister have a group chat. Debs told me to go and she would take over my work and My Mum and Sister both immediately called me. ‘Everything’s fine. I’m staying at work. Dave just wants him checked out’

3pm I call whilst on my last break… ‘everything is fine’ he says.
‘Do you want me to come after work and meet you both in a&e?
‘well… err we have been moved to a ward. Just for observation though! he‘s fine’
Debs again pushes me to leave work… She knows me too well. She knows I don’t want to be there in case something is wrong… I don’t want to hear the bad news because if I don’t hear it then it isn’t true. I know it’s selfish of me but I could justify it because Dave said he’s fine even though I know he is just trying to protect me from spiraling.

William was in fact fine and they even made it back to our house before I did. Dave was armed with a letter of discharge stating it was Viral Urticaria (Hives)
They had injected him with a strong antihistamine. This was especially nasty as they cant inject in one swift go but they have to do it over 60 seconds, so poor Dave had to restrain the boy whilst this happened.

RELIEF! all was good in the world. William was fine… we couldn’t pinpoint what had caused the reaction but he had recently finished a course of antibiotics (you know the kind; the tasty banana stuff🍌) for a chest infection, before that he had suffered with a Vomiting and Diarrhea bug. Maybe it was a reaction to the medicine or even just an after effect of been so poorly. We even thought it could have been a reaction to some cleaning products that was on Big Nans sofa as she had recently had it professionally cleaned.
I messaged the family chat to update them. Great news! only Dave didn’t look like he had great news… and that’s when I saw it, I don’t know how I missed it. In bold lettering at the bottom of the discharge letter ‘Actions to be completed by GP: we would recommend that William be referred to the social communication difficulties team for investigations of possible Autistic Spectrum Disorder. We would be grateful if you could facilitate this’
The Paediatrician at the hospital had asked Dave about Williams behaviours and told him it was highly likely William had some form of Autism.

Our 3rd Post

I cried, Dave cried and I’m pretty sure every member of our support network cried too.

When I told my Nanna she asked in hushed tones if I was telling people. ‘Of course we are. It’s nothing to be ashamed of’ she said she knows that but does she? Does anyone?

I asked my friend between sobs ‘How can I care for a child with special needs?’
‘You already are and have done for the last two and a half years. This doesn’t change who William is or you and Dave as his parents’

Posted in Brief updates

My Early Birthday Gift

William has been granted 2 year funding which covered an extra day at nursery during our ‘TAF’ meeting and the nursery had agreed to 1 : 1 support before receiving funding for it. The decision to grant this still had to be approved by a panel in order for the nursery to receive the funding and if this wasn’t granted the nursery wouldn’t be able to continue with it.

The phone call came on September 12th 2019… 9 days before my 30th Birthday and it was a gift that no others could beat.

Our 2nd post

His Level 1 funding meant that he would be getting 50% of his time with Val due to how his additional hours were worked out over the year instead of term time.
I am sure Val is lovely (I hadn’t met her at this point as Dave does the drop off whilst i’m at work) but leaving his previous key worker Linda was a big adjustment for William as he had grown an attachment to her and he would continuously try to seek her out when he should have been with Val. What made it more difficult is that she spent the 1st day of the week with him. Due to his attachment to her it was decided that she would remain with him rather than moving to another room in the nursery to prevent him becoming upset when she wasn’t around

We had been asked by his nursery to have his eyesight checked due to the way in which he was making his way around the facility. This is the appointment we were referring to in our post. We had gone to the doctors to request this who told us to go to the optician… who told us they needed a referral from the doctor. We went back to our GP who said they would put an appointment across to Hull and East Yorkshire Eye Hospital.
The letter came swiftly and I called my wonderful sister Helen who works in the hospital to ask about the consultant named on his letter… she had never heard of him. I looked on the online directory and nothing specific was given about said consultant. The Doctors couldn’t have got the referral wrong! could they? surely not!

My sister continuously asked about this referral to the point I was a bit shitty with her. Maybe she just hadn’t encountered this consultant before or he was new. She couldn’t know everyone at the hospital. She pushed and pushed so Dave called into our GP to confirm it was the correct type of referral. They confirmed it was. My sister was just trying to interfere… obviously that wasn’t what she was doing but its how I felt a the time.

Helen called AGAIN and said she had asked other people if they had met this consultant and they hadn’t… I called the national ‘e-Referral Service appointment line’ just to stop her pestering us and to prove her wrong.
She was right! she usually is to be fair but at this point in time I was telling myself William was my child and I knew best and I didn’t need other people sticking their noses in. The GP had in fact referred us to a Mr Fleet a consultant in Children and adolescent services – Urology department. He specialized in Paediatric surgery.
The referral was rectified by the appointment line who were very apologetic on behalf of our GP.

The appointment came and the staff at the Eye Hospital were fantastic… because let’s face how difficult it must be to conduct an eye test if the subject can speak, wont look at you or communicate with hand gestures. They ruled out any issues with his eyes but wanted a follow up appointment in a few months time to be on the safe side. We are currently waiting for this.