It's also very long!
In my previous Blog "A Journey Back In Time..." We ended where Ash was fit free, and her dad was completely out of the picture.
I thought getting her seizures under control would be the beginning of the end. We had to get to at least 2 years fit free before the consultant would reduce, and then stop her medication. This was our next goal.
This goal was one of the hardest, every time she had a growth spurt, she would start having absences (petit-mal seizures) she would zone out completely, sometimes her breathing would go a little funny, and she would come round confused and disorientated. Each time this started happening, we had to go see her consultant and increase her medication. This was getting us further away from our end goal! Sound selfish, but I wanted her clear by the time she went to school because I didn't want her embarrassed by seizing infront of her friends and wetting or messing herself (she did at least one of these things when she fitted) but also when I was looking at nurseries, I saw one attached to a school and the head teacher told me that Ash would be put on the special needs register and have different things than her friends and when she began school she would be in different classes. This to me was completely unfair. Her seizures were well controlled. She hadn't had a grand-mal seizure in a long while and was only at risk of seizures when she was sick, and if she was sick she wouldn't be in nursery in the first place. Safe to say she didn't go to that nursery, or that school.
A little time went by and she was doing well, no seizures, no absences. But she refused to take her medication,I was having to restrain her every time, it was horrible. With advice from her consultant we stopped her evening medication and monitored her closely. She was fantastic, no problems. 3 months later we reduced her morning medication. 3 months after that it stopped completely. Smack bang on 2 years from her last seizure. Her last seizure was 7am on 30th November 2010. 3 months after this she was signed off from her consultant. We was warned that seizures could return at any age and not always with a warning- and with her history of febrile convulsions too she was at risk of those too until she's around 6-7 years old. I was so relieved, this was the end of her medical problems.
How wrong could I be!!
It had to be within a month of her being signed off from her epilepsy, she began to find it difficult to eat certain things. She would gag and not eat much of her food- for someone as small as her this wasn't good.
She began to get a temperature. SHIT. Suppose the only we are lucky with is that her medical history she get an emergency appointment so quickly! We were seen, given antibiotics, and said she had tonsillitis. She couldn't even swallow her medicine as her throat was so swollen. Took 2 days for her to be able to swallow it. She was having water or very weak squash as she was sticking everything else up and couldn't swallow any solids. I was ready to take her to hospital, she was getting no better and I was so worried, she lost so much weight so quickly. Then it seemed like overnight she picked up. Taking her medicine well, and over the following days made a full recovery.
A month later she began being violently sick at 5am, at 7am it was green bile. Straight on the phone to NHS Direct, straightaway told to take her to hospital. SHIT. Luckily (in a way) we now lived a mile from the hospital and I had a car and could drive. She was seen so fast, admitted to the children's ward and monitored closely. She wasn't passing fluids, she was getting a temperature, and still bringing up bile. The nurses were amazing, explained so nicely that it may be a blockage and she was going to be booked in for a scan to see if there was anything visible. Within 2 hours, she had picked up and drinking(and tolerating) squash. Craziness. We don't know what caused it, it may have been a small blockage that was dislodged by itself. She was deemed well enough to go home and after 15 hours at hospital we finally got our paperwork and was on our way.
A month later she was really bad again, swollen throat, couldn't eat, temperature. Went to the GP, he diagnosed tonsillitis (can you see the recurring theme here?) and gave us a prescription. I asked him to make a referral to the hospital for her to have a tonsillectomy, this was no way for her to be living. She was missing so much nursery, I was missing college, she was losing what little weight she actually had. He said he wouldn't until she had been suffering for at least a year. A YEAR!! I said she had been in every month in the past 3 months, diagnosed with tonsillitis every time. I said her sleeping was effected, she snored loudly and often struggled to catch her breath whilst sleeping. I also told him she was in my room as I feared she would die in the middle of the night because she would not be able to catch her breath. I also asked him if tonsillitis could've caused her previous febrile problems, and added to her inability to put on much weight. Amazingly he changed his mind! He referred us to the hospital to see an ENT specialist to discuss surgery.
Six weeks later we had our appointment at our local hospital. They asked questions, said she was eligible for surgery, and weighed her. SHIT. She needed to be 15kg for them to perform the surgery, she was 12.9kg. He asked the surgeon if he was happy to do the procedure, he said yes. It was then left to the anaesthesiologist, an agonising 3 weeks later he said no, he wasn't comfortable with the risks involved with surgery on someone as small as her. DOUBLE SHIT. We were referred to the children's hospital. Another 6 weeks passed and we hadn't heard anything. I started chasing them up, and they were fantastic and explained how busy they was and was finding it difficult to get appointments out to everyone within the normal 6 week period. She asked how much noticed I needed to be able to attend an appointment, I said an hour. 3 days later, at 4pm I had a call asking us to attend an appointment at 11am the following morning. RESULT! Surgeon was lovely. Explained the procedure, complications that could happen, added complications because of her size. I asked how soon surgery would be done "within 8 weeks" SHIT. I explained I was starting university in September and its a very full on course. A lovely little conversation followed where he asked what I was doing, and said that nursing was hard enough without having to miss 2 weeks of your first semester. He agreed to perform the surgery 5th November 2012. The first day of my annual leave. Perfect. Means I could provide her with my undying attention. Any work would be done before her surgery so I won't stressing.
When I received the letter confirming the date I was relieved. She's having the surgery. As scared as I was, I knew it was best for her, and the only was to stop her being so sick all the time, and hopefully help her eat more foods without gagging on them or a fear of gagging on them!
So relieved about the news I thought we would go on holiday, heck we deserved one after what we had been through the past few years!
I booked 3 days, 2 nights in Minehead Butlins. The idea of a Butlins holiday filled me with dread but I thought Ash would love it, there would be plenty of stuff to keep us both busy, and it was right on the beach. I also planned a trip to Wookey Hole Caves on our return trip. That place always amazed me when I was younger and thought she would love it.
It would be my first holiday in 7 years, and Ash's first ever holiday. I bought suitcases, packed bags for the car trip. Got lots of snacks for the journey. As I had paid for food on our Butlins trip all we needed was lunch for those days. Loaf of bread, chocolate spread and crisps. Sorted!
The holiday was fantastic, we both loved it, saw lots of shows, live entertainment. Everything. I was actually sad we couldn't stay longer...shocking I know!
We went swimming on our last day, packed up the car and headed to Wookey Hole. Ash loved that too (apart from the witch at the start). We watched the waterfall for a while, climbed on the dinosaurs, and got an ice cream cone before heading back to the car.
Long journey home. I wasn't dreading it, I loved driving. But this turned out to be the worst drive home ever. It was hot, BOILING HOT. We had no air con. And 115miles from home, I smelled burning and our car was playing up. Pulled over for a while, couldn't see what was wrong. Car seemed ok going round the car park a few times.
My satnav decided to send us through Bristol city centre. It was then that I realised my car wasn't pulling off properly, was slow an unresponsive. 83 miles from home I pulled into a petrol station and again tried to see what was wrong. Thought maybe the car had overheated. Used the free water to cool it down. Didn't help. Called RAC, they sent help and I found out they had cancelled my policy (which they shouldn't have done, I was up to date with payments, and it's supposed to roll over to the next year unless you cancel or change the policy) the guy who came out to us was lovely, let us sit in his air conditioned van to cool down, told us our clutch was gone and my policy being cancelled there was nothing I could do without paying a huge sum of money (not helpful been as I had £20 to my name after our holiday!)
We then had the following conversation
Me: what if I drive like a learner?
RAC: what do you mean?
Me: you know how they're really annoying, take forever to get going or up to speed, go 40mph on a dual carriageway and take a silly amount of time to turn out of junctions.
He laughed at me, who can blame him! But I had to get home!!
RAC: actually that could work. Take it easy, don't go over 40mph or into 5th gear. You may have a few troubles at the motorway joining here, there's lots of roadworks. I'll follow you up to that point so I know you'll be ok, if not we will have to come to a plan b.
I got to the motorway without too much trouble. But then it was at a standstill. I sat with my car out of gear, and was one of the annoying people not moving very fast.
I had called my mum and cried like a baby at what was happening, and then that we was attempting to get home.
Once the traffic had started moving it was no trouble, coasted along at 40mph. Only problem was I had been awake so long, was hot, bothered and tired. I had all the windows open and glugging full fat cola and eating sweets like there's no tomorrow just to keep myself alert. Ash was sound asleep in the back, all the drama in Bristol and the heat had taken it out of her.
I FINALLY got home around 8pm and called my mum immediately. She was surprised but impressed I made it home and we were both safe. I then called my dad, told him what had happened and then continued to panic that my car was broken, I started uni in 2 weeks and had no money to get it fixed or buy a new car before I started. He was a lifesaver. Literally. He fronted the money for me to get my car fixed. And the next week it was in the garage. Wow. So much for a stress free holiday!
At least now I know I can get home with no clutch!!
Uni started 3rd September 2012
School started 4th September 2012
We settled in nicely to our new places and routines.
Then the planning began.
I informed uni I would possibly be having the week after annual leave off due to her surgery, and not knowing how she would recover. They was fantastic.
I then informed her school that after half term she would be having 2 weeks off for her surgery, and gave them the letter for proof. (Unfortunate really that our annual leave and half term didn't happen at the same time)
I started thinking of everything we would need for at least one night in hospital. And the suitcase was packed and ready to go 4 weeks before her surgery date.
3 weeks before her surgery, I had a phonecall from school saying Ash was poorly and boiling hot and asked if I could collect her. I put paracetamol and the thermometer in the car and headed out. When I got there she was sleep in the middle of a noisy classroom and as red as a ripe tomato! I got her to the car, took her temperature. 39C. SHIT. Called the dr and had an appointment in around 40 minutes. Gave her paracetamol and headed home. Got her changed out of her uniform into some thin pyjamas so she wouldn't get too hot.
The doctor took her temperature, 41C. DOUBLE SHIT. Her temperature is supposed to come down not go up! The dr referred us straight to the children's ward at the hospital. No more than 10 minutes later we were there and she was 43C. FUCK. More antipyretics were given, and her temp came down to 40C. A throat swab was taken.
Long story short they stabilised her condition, gave her antibiotics and sent us home with open access to the ward if she took a bad turn.
A week later I had a call saying her swab came back showing she had Strep throat. This is even worse than tonsillitis, and was lucky we went in when we did really. Ash made a full recovery. But still doesn't like the orange medicine!
Before I knew it the date for surgery was here! I was up at 4am ON A MONDAY. That in itself should be illegal. I got Ash up, went and scraped the car (for the second time this morning) I had loaded the bags into the car the night before and only had to get myself, Ash and my handbag to the car.
We headed on our way and beat all the rush hour traffic. Had a space on the hospital car park and was then attempting to find out way round the maze that is Birmingham Children's Hospital.
We eventually found the ward, and was told there was no space for us but they had got a bed for us on another ward. Luckily a nurse took us there so we didn't have to get lost again!
Then the pre-op tests are done. Then Ash was weighed to determine how much general anaesthetic she would need. 14.5kg. WOW! Had put on more weight in 4 months than she had in the previous 18months!
I had explained to Ash what was happening today, taken a picture of the inside of her mouth to show her tonsils (or big red balls as she called them), told her she would be put to a special sleep and the doctor would take the big red balls out her mouth. Said it would be "hurty" for a little while but she would feel lots better after.
Ash was first on the list. 9:05am we began the walk down to surgery. We had brought a teddy with us, Ash and Ted were wearing matching gowns.
She walked down, holding her teddy under one arm and the nurses hand. I had to convince her to hold my hand, more for my benefit that anything! We went to the room and they were brilliant. Asked me what I would prefer, as she had been prepped for a cannula but had the choice of gas. I told them she has a fear of gas masks after the seizures they cannulated her in about 10seconds and began talking her through what she would feel as the gave her the general. They said she's a tough cookie as they nearly needed more anaesthetic to get her off, it was the last 1ml that did the trick! I gave her a kiss and left her in their capable hands. This was the hardest thing for me to do. I wanted to hold her hand, be there for her, and be the first person she saw as she woke up. I geared up a little but then thought no don't be stupid and stopped myself.
Me and the nurse chatted on the way back up to the ward, and she said she could tell Ash had been told what was going to happen, and that I was calm for her sake, even if I wasn't inside! And also what a huge difference it makes to the whole experience if the child knows what's happening.
I returned to the ward, half watched a film and half dozed off. It was so draining preparing for this moment. Before I knew it it was almost 10:30am, and she was back with me. She was still coming round from anaesthesia and was dosed up on morphine as well as about 4 other painkillers. 2 long hours she slept for. And wouldn't let go of my hand the whole time.
If you saw her when she woke up, you would never have believed she had just had her tonsils and adenoids out! She was chatting away, started eating lunch, and a lady went and got some paints and paper for her. It was amazing. Later that evening my mum and stepdad made their way up to see how she was. They bought her a babybel and she had us all in stitches because she made a clown nose and mouth for herself out of the wax. They also brought me food! I love anyone who brings me food but after 16 hours of no food I was about to chew my arm off! Lol
Night was a little more difficult but I kept an eye on timings, and requested medicine just before she would need it so it would be ready. The bed next to us had had the same operation but they weren't doing as well. And the mum kept saying to the child "if you don't shut up I'm going to go home and leave you here alone" great work, saying that to your child just after they've had surgery and are in pain!
The next day she was feeling very sorry for herself. Very cuddly and clingy to me. And they said this is normal. She was tolerating the pain well, and eating extremely well. So we were discharged that morning. Given medication and told dosages we were sent on our way. Around £20 in hospital parking and we was free!! Home before midday we curled up on the sofa and went to sleep. Bliss.
Ash recovered really well from surgery. But is finding it hard to adjust to not having to go to the doctors or hospital on a regular basis. But she's finally realised (6months later) that she doesn't need an ambulance or to go to hospital just because she has a cough.
For anyone who doesn't know, Ash has a huge obsession with ambulances, always has. She said she wants to be an ambulance when she's older. Not a paramedic, an ambulance!
She has put on a really good amount of weight and is currently having a growth spurt since having surgery. Her eating has improved significantly, and around 10days after surgery she had shepherds pie, for the first time since she was around 1year old!
She's thriving in school, and I know I'm biased, but she is so clever. Interested in everything. She knows basics about the heart, blood and digestive system. Mainly from her being nosey about my assignment!
It still amazes me what's happened in her life in the past 5 years, and you'd never believe it to look at her.
Her strength gives me strength to cope.
No comments:
Post a Comment