On our way to the hospital of doom and gloom

We are on our way to the John Radcliffe. The hospital of doom and gloom; the hospital that told us that Sam had 50% chance of surviving his CDH, then 30%, the hospital that told us that Hope had extra fluid in her ventricles, then that she had a small cerebellum, that she'd most likely never walk or talk, that if this was his baby, he'd........... Without question.

I already have butterflies. Chris decided that this morning was the best time to first mention that he thought these tests were pointless, and aren't going to change anything anyway. this is a battle I've been having in my head for nearly a year now- since we last pulled out. Part of me wants to pull out again, but it's too late... And it does need to be done. I hope in a way, that we don't get any answers... but hope that we can rule out some of the more scary mitochodrial disorders. I hope with all my heart and soul and every cell we don't get a diagnosis that carries a life sentence with it. I don't want to know!!!! I guess I'm also hoping that we may find out some positives, that it's not all doom and gloom, that there may be something that they can try, a new medication, the ketogenic diet perhaps, miracle cure would be nice!!!

We won't find out today. It'll probably be weeks, or months. Most likely, today will be the first of many visits, perhaps trips to Great Ormond Street will follow.

Today she will be sedated for the first time. In a way I'm glad she will be, because the last time she had a lumbar puncture, she was awake, and it was such a traumatic experience for us both. I'm hoping they are just planning to use a short acting sedation like midazolam, and not general anaesthetic , but the fact we've had to fast her since midnight suggests the latter- though hopefully I'm wrong.

Poor lil thing, I've not even been able to give her her epilepsy medicines. I just hope we can get them into her early enough for it not to have negative consequences later on. Ironically, today, she does seem to be pretty much better. Though I suspect later, she won't be such a happy honkey.



Lots of love, luck and prayers needed please!

I'll update again later

Xxx

On the mend??

Today we had to go back in for a review and to have Hope's blood gases checked. It was hoped that her lactate would have come down again, then we'd all sigh a breath of relief that she was on the mend. Unfortunately it was still 3.8. Therefore the SHO (senior house officer) doctor couldn't discharge her. She had to consult with the registrar, who in turn passed the decision making onto
The consultant. All this meaning what could have been a quick In and out visit, was getting longer, and was looking scarily like we werent going to escape. After examining Hope, she agreed we could come home. Though she's still very sleepy, we've had a couple of moments of awakeness and even some smiles. She's not eating or drinking hardly. When we went in this morning, she'd had her morning medicine yogurt (that's just what we give her her cocktail of medicines in), that was hard work to get down her, but is not optional! Then a couple of chocolate buttons whilst Dolly was doing her ballet exam.

We came home late afternoon; hoping she'd now be hungry, I made her an egg Mayo sarni, which she gagged on and spat out, so figured I'd temp her with a milkybar dessert. She wouldn't even eat that!! We even fought to get calpol into her, nevermind anything to drink which is a struggle at the best of times.
Within an hour of being home, even Chris said he thought she'd be better off in the hospital, and I was thinking that he may be right. Hope then slept and slept and slept. I made up a big batch of her favourite butternut squash and pear soup, in the hope that we can try to get some fluids plus something nutritious into her over the coming poorly days. I went out for a run (I've missed that this last week) and was so relieved to come home to a Daddy who was very pleased that he'd managed to get her to eat some.
I was seriously considering (and I haven't quite ruled out) taking her back in tomorrow for iv fluids, but hopefully this is a step in the right direction.

On a less positive note... Her Nappies have been dry all day and night ( it's now 11pm) except for one wet one at 11am, so fluids may still be needed. Her mito disorder means that dehydration is a big no no, and the lactate being high makes this even more crucial.

So just hoping really she keeps taking these teensy steps in the right direction, and that we manage to avoid the children's unit for the rest of the weekend.

The consultant did say to bring her back if she's consuming less than 25% of her normal diet. I think we are just on the border now thanks to the soup. For what reason I do not know, since they can't seem to lower it, she said she'd like to repeat the blood gases next week. But I explained that we are due at the John Radcliffe next week anyway for all sorts of tests, which will include bloods of all sorts... And a lumbar puncture :"( trying very hard to put that to the back of my mind for now

Thanks for all the get well messages. I've passed them all on to her honkness

Xxx

That was scary!! 999!!!

Hope was unusually sleepy on Monday; a sure sign she's about to come down with something. We went to bed about 11 (hope was in with us). She started fitting. Not an unusual occurrence for , but when i noticed it was getting stronger rather than coming to an end, I glanced at the clock. 11:33. This is something that's become fairly instinctive now, knowing that there's a limit to the time she should be left fitting. Approaching the ten minute mark, I told Chris I was thinking of calling for an ambulance. Hope was still on her back, and then started choking. I lifted her up and she was really sick. SHE HAS NEVER BEEN SICK BEFORE. Then she was choking again though the seizure seemed to be lessening. We called for an ambulance. Hope's seizure seemed to have ended, but she hadn't recovered to her normal self. She was quite unresponsive and trembling and was having some jerky movements in her legs and feet ( leftover seizure activity). The first ambulance crew to arrive was a fast response unit in a car, so they called for an actual ambulance to come and take her to hospital . She seemed to quite enjoy the ride. Though I hated leaving Jordan in Max in bed , I kissed them before I left, and felt to sad knowing they'd wake up worried :"(

Hope was seen by a nurse upon arrival at the hospital bay. She started fitting again, and they moved her to a resuscitation room! A bit extreme I thought! And scary! But they said that's they'd bleeped the paediatric doctors and that's where they'd would want to see her cause they'd have everything they needed to hand. Her fit had ended by the time they arrived, though her little toe and foot were twitching :0(

They took bloods and arranged for her to be taken up to the ward. Her lactate level was upto 4.8 which is so so high and made me very sad ( it should be under 1.6, but Hope's is always raised, though last time it was checked it was only 2.4). It's an indicator that something's definitely not right. Her temperature was 37.8 which is really high for her. Because of the mitochondrial disorder her normal body temp is only 35, and has never been above 36.

She had another nasty fit on the ward, and the doctor was just ready to give her the rectal diazepam to knock her out when the seizure lessened.

Still not knowing what's really wrong,they decided to treat her with intravenous antibiotics, and iv fluids to treat the acidosis in her blood.

By the time this was set up, it was 4am. The recliner chairs to sleep in are far from comfy, and before I knew it, it was morning.

She was on hourly obs, and continuing her iv fluids until the doctor came around 1. He didn't really know what's wrong either, but agreed that we could go home in the afternoon providing she kept her canula in, and her lactate had come down and her hydration was ok. So more bloods. The saying 'like trying to get blood from a stone ' springs to mind. Poor lil honkey is like a pin cushion. Later in the afternoon we were told that the blood gases machine wasn't working, so we could go home for the night and come back in first thing in the morning for more iv fluids, antibiotics and to repeat the blood tests.

Hope slept all evening, through the night, and was still sleeping when we went back in at 9. She had her iv's, then was seen by the junior doctor. She wasn't too happy with her or that her lactate was still 3.8, and I was concerned that she was so sleepy and still jerky, so we had to wait for the registrar to see her. The registrar felt that the lactate, sleepiness and jerkiness were all related to her having some kind of infection, and hopefully she'll improve soon. We were discharged, but have to go back on Friday , by which time , hopefully, she'll have improved, and hopefully her lactate will have come down. If not, then I think she'll be admitted again.

She's Still fast asleep (6pm). I miss seeing her smile. I've tried putting her in the swing, and rowing the boat, and blowing her with the hair dryer- all her favourite things, but no smiles. Though she did manage some ice-cream from the ice cream van after school.

Botox!

Botox

There's been rising concern again over Hope's tendons in her feet and ankles. Despite wearing splints (which are an ongoing nightmare in themselves) as soon as she's out of them (which she often manages to escape from them herself) her feet point outwards again. This makes standing (supported obviously) uncomfortable and well... They just aren't how feet should be. The more she does it, the less the range of movement becomes.

We are just going through the process of having new splints made. It was at our last appointment that the dreaded casting was mentioned again. Last year she spent 5 weeks in plaster casts from her toes to the tops of her thighs. This process stretches her tendons. But it's a nightmare. She cant do her favourite actives of rolling, swimming and soaking in the bath. Clothing is limited. But mainly, She's so awkward and heavy with them on. She was last year, and she's almost doubled in size since then.

It was left that we'll see how she goes in a few weeks, and see how she gets on with her new splints when they arrive next week.

On Tuesday we had our regular 3 month appointment with Hope's main consultant (and wonderful man) R. He gave her a thorough check up, and was generally satisfied with her epilepsy, her spine and overall health. Though he remarked that the bout of coughs/colds/ infections she's had recently may be linked to me stopping breastfeeding, in November of all months!

He's never really shown much interest or concern over Hope's feet and ankles. Leaving that to be dealt with by the physios and appropriate doctors. However on this day, he was very concerned over the tightness of her tendons and the inflexibility of her feet and ankles. He pushed twisted and pulled my poor baba around till she screamed and tears ran down her face :"(
But, for the first time ever, Botox was suggested. I've heard of it being used for children with cerebral palsy quite often, but had never considered it for Hope. But R Hope's that by injecting botox into the surrounding muscles, they might relax somewhat and relieve her of the tightness. So, she's now on the waiting list- which is 3-4 months or so. So hopefully in the mean time, we can keep the plasterers at bay!!

New wheels! And more nice news

Far too much time has passed for me to try and catch up, so I guess it'll be sporadic postings every now and then. And that's probably /hopefully a good thing, because in hindsight, this Blog is often my therapy /outlet at our darkest patches. And we don't like those thank u.

Well Hope hasn't exactly been a picture of health recently: the flu jab in december really took it out of her, and since then she's had a chest and throat infection. Though she's on the mend, her illnesses seems to be a vicious circle of being ill, not eating, therefore not taking her epilepsy meds properly, getting dehydrated, and therefore having more seizures and being more lethargic... Not eating etc.

Anyway, this is supposed to be a happy post. Her wheels are here!! A momentous occasion!
I was worried that they'd arrive, and that even after all the effort that went into getting them, that perhaps I wouldn't like them as much as I thought I was going to. Or that I'd have some issues/ personal
Battles to wrestle with over what it actually is/ represents. As in, it's not a pushchair. It's a 'postural seating system' or wheelchair. It represents That my honk can't walk. That she's different. However, it is so splendid, I am pleased to say, I have no such issues. It's nicer than I remembered, and seeing Hope so comfortable in it, just makes it even better :0)
Thank you doesn't seem to cover it really, but thank you so much to everyone that made this possible!

What's more, due to the late (but rightly so) contribution to the wheels by wheelchair services (they finally agreed to take back the useless wheelchair they supplied, and give us it's value towards the stingray), Hope now has a nice amount of money left in her bank account. I decided to get some more extras for the stingray; an extra harness, a grab rail and a play tray (expensive extras totalling just shy of £200). With the remainder of her money, I intend to buy her some 'switches' and switch toys, and a special swing for the garden. Hope LOVES swinging, but her head control isn't strong enough to cope in ordinary swings.

More nice news: I've mentioned the rainbow trust before. We have S from there help us when we need it (though I'm pleased to say we hardly ever do these days- though I know she's there should we need her). Anyway, last year, I shared Hope's (and our whole family) story, and agreed to have pictures taken for the rainbow trust to use in their Xmas appeal. Seeing it all in print, I have to admit, I was a bit gutted, just cause my family life was made out to be a real sob story , and I really don't like people to feel sorry for us, when actually despite everything these last few years have thrown at us, I do feel blessed ( most of the time anyway). Today I received a thank you note in the post from the rainbow trust, thanking us for allowing them to use our story, and saying that our story had already bought in more than £17,000, and they are expecting more! It's so nice to think we've been able to give something back to a charity that's helped us so much in our times of need.

Anyway, a mahoosive thank you from me and Hope to everyone who sponsored us and helped to
Pay for the very best wheels that money could buy!

Xxx

The stingray (nov 19th)

The stingray !

The stingray by far lived up to my expectations and hopes. Plus more!
It's the one!

The downside being ... £2,816

Though we've raised a fabulous amount, (which I still don't have the final total in ) we are still quite a way off.

With this on mind, I wrote to wheelchair services telling them I'd found the perfect set of wheels, giving the many reasons why this one is suitable over the snappi. And askimg them why they couldnt take back the unused one they supplied us with and make a contribution towards the stingray. I also wrote to say that I'll do whatever it takes to get what Hope deserves, i'm used to fighting for her, and my next step will be to contact charities asking for financial assistance (which In turn would contact wheelchair services because this is the procedure when funds are requested for wheelchairs when they should be funded). I also said I was considering bringing the issue to the press' attention in order to raise the rest of the funds needed. Though I'd been in touch before, as had Hope's lead professional, I felt it was worth one last effort before I started kicking up a fuss!

Within a week I'd had a telephone call from the manager of wheelchair services to say this matter had been bought to his attention. He said he understood my situation, and supported my case, but that ultimately it wasn't his final decision. He said that he'd have a meeting with those who would make the decision, and also that they needed to find another child that they could issue Hope's snappi to within the next 6 months. He would let me know by the end of next week.


On Tuesday I received the good news :0) They are going to take back the snappi and give me a voucher towards the stingray. I don't know exactly how much just yet, but it will be In the region of £1000-£1500. With this though I will have to pay for Hope's wheels to have an annual service which is around £100 each time, plus I am responsible for any parts and repairs costs over it's lifetime (whereas with the snappi, wheelchair services would have serviced and maintained it free of charge). Though this is s bit of a bummer, I'm still happy to be getting some financial assistance from them. That amount, along with what we've raised .... we have enough :0) and depending on how much we get from wheelchair services, there may even be some money left over to buy other specialised pieces of equipment that would help Hope.

So my dear friends, thank you so much, from the bottom of my heart for making this possible!

Xxx

It'll probably still be a few months before we actually get the stingray mind... Red tape and hoops to be jumped through first, but I'm not in a hurry now I know It's happening soonish

What a week (nov 1st)

What a week!

A while back, Hope's physiotherapist told me she was concerned about Hope's neck, and her difficulty in achieving a 'chin tuck', so this, along with mine and her concerns over her hips, and her continuing 'specialness' with her twisty ankles, prompted her to refer Hope back to the orthopaedic consultant.

Fortunately, for my sanity, it wasn't until the morning of the appointment, that I realised where the appointment was. The Brunel treatment centre. I googled it, merely to find directions, so imagine my horror, when this is what I discovered :

The Brunel Treatment Centre is a 128 bed state-of-the-art facility attached to the Great Western Hospital. It has been specifically designed to treat patients who need elective (planned) surgery and where patients are offered a pre-assessment health check to ensure they are fit and informed for that surgery.
So that panicked me to say the least.
Upon arrival, We were sent for lots of X-rays of various bits from all angles.
Then we met with the orthopaedic surgeons, who thankfully agreed that it's worth perseveringly with the splints in regard to her twisty feet and ankles, and leAving surgery as a last resort. Phew!!! They also remarked of her spine, that it appeared straight - at present, at least. This is great because in the past she'd been diagnosed with scoliosis - a curvature.
Her hips were also found to be fine, which is a relief, because surgery and spiker cast would be the treatment.

However, on our way in to
Meet with the ortho surgeons , Ravi, Hope's main consultant, spotted her, he followed us in, asking what was wrong with Hope, saying that she didn't look well, and asking me lots of questions. He apologised for worrying me, told me not to panic, then arranged for us to go to the childrens' unit for tests after this appointment.

We did, but Ravi wasn't about, and there wasn't anybody available to do the tests he requested, so we arranged to go back on Friday. Despite Ravi telling me not to, I obviously did worry. So I rang Hope's disability nurse, who works closely with Ravi, and she arranged for us to be fitted into a clinic with him the next day.

Ravi gave her a thorough examination, and found her in fairly good health apart from the constipation/fissures - poor mite. But he felt she wasn't as she was last time he saw her a few weeks ago. But I explained to him, this is how it is with Hope. Last time he saw her, she was 100% and on top form, but she's not always , and mainly, we don't know why.
He wants to see her again next month

We had to go back to the childrens' unit on Friday. Fortunately we saw a competent doctor who took blood from Hope as well as can be expected.
We had to wait for the blood gases results. The doctor came back with them and said they seemed ok, but her lactate levels were a bit elevated. They were 3.45 (should be less than 2), but Hope's usually run around 4-5. This equates to lactic acidosis, and causes damage to organs and is literally poisoning her blood. So being that low, makes me very happy. Though I'm slightly puzzled as to why they are that low, and wish I knew what caused it, and how to keep that low, or even bring it down more.