No more doctors now please!

It was getting pretty insane last night waiting for her too pee; we were trying to get her to drink all day, but with little success. We resorted to jellies. We were obsessively checking her nappy. we tried; sitting up, laying down, going for fresh air in her pram, then it got desperate, Chris had her sat next to a running tap, I was trying to massage her tummy and put pressure of her bladder, one nurse suggested blowing on her down below- then me and a nurse and Chris were all blowing!! Hilarious and crazy!
It got so we weren't even checking, we just had her nappy off, with the catchy thing attached to Hope, and we were watching, pleading for her to pee. One older nurse came and suggested splashing her with water, then said she'd try a joke to make her laugh first. I can't even remember what she said to Hope, but not long after she started talking, the bag was filling with yellow! There were claps and cheers all round! We finally left about 6:30.

We were told to expect Hope to be drousy for the next 24 hours or so, and that she may have a headache, but to watch out for signs of infection which can be caused by the lumbar puncture. She seemed pretty well last night when we left, and though she was a bit uncomfortable in the evening, I wasn't overly concerned. However, this morning she was hot. Hope doesn't do hot, her temp yesterday at the JR was 35.3 which Is perfect for her. I got her into the docs who checked her all over, and has given her antibiotics for a chest infection. I'm relieved she doesn't think it's related to the lumbar puncture, but still pretty sad that Hope now has something else. She needs a break! And so do I! I would really now please like to have a couple of weeks off of doctors and hospitals!

Oh and thanks everyone for the messages and texts. Sorry I can't reply to texts at the moment. In my lent promise to give up Facebook, my phone has taken rather a hammering!! I used 600 in just over 2 weeks- oops! Lol. But I get my new text allowance next week, plus... Not long till Easter... I'll be back on Facebook!!!!! :0)

Xxx

Please pee plonkey!!!

Everything's gone as well
As it could go. We've been well looked after, and Hope was even supplied with some fibre optic lights to play with. We had a slight hiccup in the beginning as Hope started coughing and sneezing just as the doctor came to see her. Then the doctor was then considering postponing the tests until she was better. But as I said to her, since November-ish I think, Hope seems to have come down with various viruses and infections one on top of another, so getting another appointment that coincided with a 100% well Honkey, may be tricky! After a thorough going over of Hope, she said she was reluctant to use the planned iv sedative that would have kept her asleep, but also carried a greater risk of respiratory depression, and would only use an oral sedative that wouldn't completely knock her out, but just make her a bit drousy. I did go
With her for her last lumbar puncture, but kind of assumed I'd not be able to here. The nurse asked if we wanted to go in with her, or offered the services of a play worker to comfort hope. As awful as they are to witness, I felt that the least we could do was to be there to comfort her.

Though she'd woken by the time of the procedure, she was still drousy, she gave a little fight as they tried to get her into position, and cried a bit as they took the spinal fluid, it was far less traumatic than her previous lumbar puncture. After that, 2 doctors and 2 nurses spent over an hour trying to take blood. Hope was fairly patient with them all pricking her trying to get the good veins. They took FOURTEEN vials of blood!

After that we went back to the ward. Hope had her vigabatrin in some custard (5 hours late due to fasting for the sedation). They were pleased with her recovery and that she was again alert and had eaten and not been sick. So as soon as she pees, we are free to go. They'd put something in her nappy when we first arrived to catch a sample of urine. It's still dry! We've been here since ten. We have been sat just waiting for her to pee for a couple of hours now. We keep checking and hoping...
C'mon Honkey.... Please just PEE!!!!!

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.