Saturday 30 October 2010

Returning home

I hold him in my hands and rock him to sleep, a spine curved now relaxed.  We are safe here in dreams.  I sway from side to side and sing a low Northern lullaby.  And tears of joy form.

I hold him in my arms, and he fits.  My daughter scoops up his drugs from the young nurse and we return home.

"I can sort it,"  she says.

And she does.  She reaches for a pad of paper and a pencil, and fifteen minutes later she's sorted a Drug Programme, administered five separate medications and is feeding him.  Immense.

I am in the hospital with my daughter, a chattering TV screen sequined and dancing on a Saturday night.  My daughter danced once.  I want her so dearly to dance again.

He fits, once more.  The nurse comes and times him home.  Eyes rolling and shrieks, then he's back with us.

Twitch

Tuesday 12 October 2010

the twitch texts - vol. 4

my daughter

Looks like twitch might be let out today!  Yeah! Just got to see the expert n discuss a plan of action.  What are the odds?

my daughter

The vampires are out to get him.  They want his blood!

my friend, Ric

Hi.  Just wanted to see how it's going. Ric

my daughter

Twitch successfully registered.  Just picking up little lamper now and then home.  G is already there.

my daughter

Well twitch has had a week of being at home and has been doing really well until the doctors decided to mess with his medication.  He has started fitting again.  Just got to see how they want to change his medicine.

my daughter

I think they got bored with us here.  Off to addenbrookes on mon if they have a bed for us.

my daughter

Well twitch is so excited about going to addenbrookes that he is trying to beat his record number of fits in a day.  So far we are on 12 and his record is 14.  Lets hope the extra meds kick in soon.

my daugher

Looks like the doctors really like the pictures twitch draws with his brain.  Addenbrookes want to see them 2 so another eeg it is.  They also dont think he is enough of a druggie so more medication as well.  At least he wont need to dabble with drugs when he is older, he will already have the tee shirt!

my daughter

What a performer.  Sleep, fits and awake time on the eeg.  What a good boy!

my daughter

The hospital have a new tactic.  Turn twitch luminous!  His medicine is bright yellow and stains everything it touches, clothes and skin.  Twitch has a lovely shade of lipstick at the minute.

Saturday 9 October 2010

We dream endlessly of flight ....






The Twitch Texts - Vol 3

my daughter


Just spoken to doc.  They have finally decided twitch has epilepsy.  They might give him steroids to control the twitching.  They still need to talk to addenbrookes and find out what they advise but doc is hoping to discharge us and just go in for tests n stuff.

my elder brother


Thanks for keeping me up to date - hopefully it will be something they can control and he might grow out of it.  Wish J all the best from me and L.

my daughter


Well twitch is going to be superman cos he is going on steroids to control the epilepsy.  Lets hope the side effect of hunger doesnt make him feed any more or i will be permanent milk bar!  Just a few more tests and we should be home.

my daughter


Twitch successfully registered.  Just picking up W now and then home.  G is already there.  Love you so much.  J

my daughter


Well twitch has had a week of being at home and has been doing really well until the doctors decided to mess around with his medication.  He has just started fitting again.  Just got to see how they want to change his medicine.

my daughter


Twitch has decided home is really boring so mommy had to take him back to hospital cos his fits started again.  I think he has a secret love of needles despite his protests.

my daughter


Twitch is a very clever boy.  He has been drawing some really pretty pictures with his brain on the eeg for the men in the white coats to look at.  Just go to wait n see what they make of them.

my daughter


The hospital love twitch so much they want him in for 2 weeks while they wean our little druggie off the steroids.  Bored already!

my daughter


Twitch has decided he loves hospitals so much he saved his first smile for our nurse this morning.  What about his poor mother who has fed him n even changed his foul bum!  No the nurse got the smile.



Serenity











The Twitch Texts - Vol 2

my daughter


woohoo twitch had a fit free night.  They just have to get his meds right n then we can come home n just return for tests.

my daughter


Woohoo.  Twitch getting discharged today!  Wonder if I will too?

my daughter

Twitch n mom going home today!

my daughter


Hi did you just ring.  I got a missed call and private number.

my daughter


Mystery solved.  It was the hospital.  Twichs meds r at right levels.

my daughter


Just to let you know twitch back in hospital.  Fits are not stopping. They are admitting him overnight for observation and we will see what the morning brings.

my daughter


Just seen doc.  They want to give twitch a party and look at him under uv light n also contact cambridge for some advice cos the seizure expert here just retired.  They gave him extra meds last night n since then only 2 fits so at least thats good.

my wife


Twitch had fewer fits today - double meds.  I'm off to J's for the night .  J hoping discharge tomorrow.  If so I will come home then x

my daughter


Twitch has been a good boy so has been given an overnight pass!  He better behave at home!

my daughter


Well they finally found out that young twitch has an abnormal brain.  He made pretty patterns for the eeg man.  Just a shame they dont know what the patterns mean.  Will find out tomo when they talk to the experts at addenbrookes.

Sunday 3 October 2010

Arrival

d




The Twitch Texts - Vol 1

A special gift called Twitch.   His story unfolding in a series of text messages ...

My wife

Twitch at 4:34

My elder brother


Congratulations.  Say hello from me, L and the family.

My cousin


So this is what happens when the computer and the answerphone pack up!  I'm all agog!  Bigtime congrats 2 all. Ouch I bet!  Will ring asap.  Much love 2 all.  Z'n'themxxx

My younger brother


Many congratulations, hope Mum and baby doing well.  Pass on our best wishes to everyone.  I can tell Mum if you want.

My wife


Arrived at the barn.  Will go to hosp after cuppa.  How's things with you? x

My daughter


Hi dad.  On the ward at the minute so cant use phone for calls.  It sounds like you are having some quality time with gran.  Give her a big gentle hug from me.  Twitch is doing well.  He is off his iv fluids now so just me feeding him which is nice.  He is still hooked up to various monitors but is much more peaceful.  He hasn't had any fits since yesterday.  Love you lots.  J

My daughter


Twitch has had a good night.  Feeding every hour and i half the little piglet.  Hes much more lively and alert now so they have to keep replacing the sticky bits on his monitors.

My daughter


Just to add to our fun and games W now has croup!  D had him down the emergency docs last night.   He is fine now.

My daughter


Twitch just had another fit.  Only lasted 20 secs n didnt set monitors off.

My daughter


Doc been round n didnt seem worried about fit.  Just wants to carry on with obs.  All bloods normal.

My wife


Staying at J's from tonight.  Bringing W home wed for unknown period xx

My daughter


Twitch has had some more fits in the night but he is ok.  They still dont know what is causing them.  It hasnt stopped him being a greedy monster though.  He likes his food every 2 hours with the odd snack in between!

My daughter


Hi.  Just sent you a general update on Twitch.  How is gran?  Sounds like you had a good trip down memory lane.  I am so glad you have been able to spend some quality time with her.  Give her more hugs from me.

My daughter


Twitch had a cluster of 3 fits close together last night despite being given a sedative.  Just waiting to see doc on ward round to see what is going to happen.  He should be having a head scan later today.  Let's hope they find a brain!

My wife


At hosp awaiting head scan.  MRI and EEG later in week.  Drs not overly concerned at this stage.  Will be back later than thought as staying for scan x

My wife


Today's tests finished.  Decided to travel wed am.  Speak later x

My daughter


Well we can now successfully confirm that Twitch does have a brain n that it does work.  Past that we are still clueless and he is still fitting although he is now on daily meds to help control the fits.  Just need it to start working!

My daughter


Well they r still waiting for test results but think it may just be one of those things he will grow out of.  They want him to have an mri and a few more days of drugs to check he is getting the right levels n then we may be allowed out.  Dont you love the doctors never say anything definite!

My daughter


Twitch went for mri yesterday.  Behaved himself until mom bled all over the floor.  He cant take her anywhere!

My daughter


Just saw doctor about Twitch.  His brain is normal as far as they can tell.  They want to get fits under control.  They will let us home just coming back in for tests to see if they can find the cause.  They think the meds r working even though he is having more fits as they are shorter.  He finishes his antibiotics tomo.

What happened .....