Gone Too Soon

Over the last two days, there have been two losses from the HIE community.

 

The first, a little boy named Noah who was 22 months old, from Australia.

The second, a little girl named Ellie who was only a few days old, from Alberta, Canada.

 

Trying to find the right words is impossible, so instead I will just say that my thoughts and love are with both of these families.

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Discharge Summary

Back in February we went to the Stollery and requested Noah’s hospital records. We finally received them in April, all 210 pages of them.

Today I got a letter from the University hospital that included the discharge summary from December 29, 2010. Apparently it was unavailable when we requested the hospital records, but it was available now. 

_______________________________

December 29, 2010

DISCHARGE SUMMARY

Noah [last name] was admitted here at 47h of age for management of seizures. He was born to a 19-year-old G1P0 in Grande Prairie. Mom was induced at 40 [actually, 41] weeks gestation. There was meconium staining in the amniotic fluid and variable deceleration. Membranes ruptured one hour prior to delivery. She had a spontaneous delivery after labor of 2.5 hours and a second stage of 1 hour. The baby’s cord pH was 6.9. He was born flat and given Apgar scores of 2 at 1 minute, 7 at 5 minutes. Birthweight 3920 g. He was given PPV [pressure positive ventilation] for 3 minutes and was then started on CPAP. At 15 minutes of age he had a pH of 7.05 and was given sodium bicarbonate. He had a pneumothorax and initial examination showed the baby to be hypotonic. He was also noted to have a caput succedaneum which subsequently subsided and a cephalohematoma was evident. He had a partial septic workup including a lumbar puncture and was commenced on antibiotics. At 30h of age he was noted to have significant apnea with desaturation episodes and was given caffeine. Subsequently, he had seizure activity. He then required endotracheal intubation and was transferred to the […] NICU for further management.

On admission, weight 4 kg, HC 38.74 cm, L 50 cm. On examination, Noah had a large cephalohematoma, he had an extended posture, no suck or gag could be elicited, he withdraws to pain. Other systemic examination was unremarkable. Impression of the team on admission was that he had hypoxic ischemic encephalopathy, Stage 2 to 3. Initial apnea EEG showed severe suppression with periods of bursts in between, together with episodes of seizures. Neurology was consulted and an EEG showed a brief two seizures with a burst suppression pattern. Over the next few days he had seizures that were difficult to control requiring up to a maximum of 50 mg/kg of Phenobarbital, Phenytoin 20 mg/kg, and Midazolam infusion. The prognosis was guarded and a repeat EEG at 10d of age was still abnormal with modified burst suppression pattern.

There has been extended discussion with the parents regarding a long-term prognosis and outcome. Noah was extubated on December 24 with a DNR order in place. The parents and extended family have been in  attendance.

Over the next few days his clinical situation has changed. He has been breathing regularly and opening his eyes but remains hypotonic. He has a suck reflex and grasp was weak, arms were flexed and he was responsive to stimuli. After further extensive discussions with the family, they agreed that they would like to continue with palliative care, and offering Noah feedings by bottle. There is no gavage feeding at the current stage.

Given the MRI finding and the abnormal EEG at 10d of age, his prognosis remains quite guarded. He is certainly going to have disability, the extent of which is unclear at this stage. Should Noah survive, he will require follow up with the Glenrose Hospital and a repeat MRI in two to three months’ time. It is also important for Noah to have physiotherapy for range of movement of extremities as he is likely to develop cerebral palsy.

FINAL DIAGNOSIS:

(1) HYPOXIC ISCHEMIC ENCEPHALOPATHY (SARNAT STAGE 2-3)

(2) UNCONTROLLABLE SEIZURES

(3) PALLIATIVE CARE.

_______________________________________________

Musical Fridays

I ❤ Hannah Hart.

LYRICS:

well i’m a cereal killer
like my ice with vanilla
and i always take my meats dried

we need to have a serious taco
don’t touch these chips, they nachos
well i don’t even really mind
(why not)

’cause i got a chip on my shoulder
i guess i’m getting older
your sweet is turning into a spice

so let’s go and get some curry
nobody’s in a hurry
watch out, i’ll put my white on your rice

you know i never stop nommin’
put spaghetti in my chow mein
lock it down with a key lime (pie)

now this track is straight urban
we better put some herbs in
you know that it’s about thyme

for you to show me where your noms at
show me where your noms at
baby gotta palm that

ice cream cheesecake batter up
fatten up, saddle up
if you’re with me, can i have a what?
what! whatcha do with your favorite food
i boast the most toast and got that gravy too
i’ve got no ice here around my neck
but i’ve got spice that’ll make you sweat
so play nice ‘cuz you better better bet
i’m not quite finished yet
now let me double this, you could be covetous
of my bread butter being how i come up with this
but the trouble is, nobody gets
cooking like me, just show me where the oven is
loving this drunk in this kitchen best
cutting up some of this chicken breast
rubbing it up and then down
shove it in now at 350, press start
and then we chill until it’s done
where’s my drank? baby you wait and just maybe i’ll get you another one
it’s such phenomeNOM, join us fu’tha nomathon
think of it as the opposite of when you stop nutrition like it’s ramadan
gotta get your nomming on while i’m dropping bombs to the calmest song
i’m dancing with hannah eating bananas like she’s donkey kong
let’s have a food fight, it’s morsel combat
i see your cream pie on a plate and raise you a straw hat
i’m like a wombat, just wanna get all fat
so if you want that, show me where your noms at

CHORUS

I’ve got some fantasies
and they all involve the cheese
girl it’s you and me
and I wanna please
with my gouda swiss and havartis

oh baby just wait and see
i’ll shred cheddar like it’s real money
it’ll be so cheesy, just lemon squeezy
when it’s you and me

REPEAT AWESOME CHORUS

Musical Fridays

 

I’ve made up my mind,
Don’t need to think it over
If I’m wrong, I am right
Don’t need to look no further,
This ain’t lust
I know this is love
But, if I tell the world
I’ll never say enough
’cause it was not said to you
And that’s exactly what I need to do
If I end up with you

[Chorus]
Should I give up,
Or should I just keep chasin’ pavements?
Even if it leads nowhere…
Or would it be a waste
Even if I knew my place
Should I leave it there
Should I give up,
Or should I just keep chasin’ pavements
Even if it leads nowhere

I build myself up
And fly around in circles
Waitin’ as my heart drops
And my back begins to tingle
Finally, could this be it

[Chorus]
Or should I give up
Or should I just keep chasin’ pavements
Even if it leads nowhere
Or would it be a waste
Even if I knew my place
Should I leave it there

Should I give up
Or should I just keep chasin’ pavements
Even if it leads nowhere
Or would it be a waste
Even if I knew my place should I leave it there
Should I give up
Or should I just keep on chasin’ pavements
Should I just keep on chasin’ pavements
Ohh oh

[Chorus x2]

You Want To Forget

You can’t cry forever,
You can’t curl up and die,
You have to get up in the morning,
And soothe him as he cries.

The days are cold,
And the nights are long,
Because you cannot sleep,
You wait until your eyes clamp shut
So that you have no dreams.

Dreams are where hopes go to die,
You see them playing out,
An alternate universe where life is normal;
You don’t know what birth injury looks like,
You aren’t affected at all.
You take your toddler to the playground,
And he doesn’t cry.
He runs and laughs and climbs and his innocence shines through,
That pure innocence of discovery
And that simple joy that can be found in a snack and a sippy cup.
And there YOU are,
A shining light of naivety and joy,
Ungrateful joy.
This Dream-You doesn’t know how good she has it,
How much you yearn for that innocence that she has.

And then you wake up.

The harsh light of morning and your child’s cry,
Is startling and cruel.
Your heart knows loss,
It knows grief.

Those dreams are torture.

You walk around and carry that sadness with you,
Your mask wears a smile,
It is optimistic,
It has hope.

The real you is nothing,
There is no hope,
There is no ending to this nightmare.
Oh how you wish that your dreams and your reality were reversed,
How you wish that you would wake up,
And still be hugely pregnant,
How you wish that this could be some extended, extremely detailed nightmare.

But it’s not.

You try the best you can,
You try to hide your pain.
You try to pretend that seeing a healthy newborn doesn’t feel like a slap to the face,
You try not to think about what you are missing out on.
You try to forget how it felt,
That first two weeks of motherhood.
That rollercoaster of relief, joy, uncertainty, fear, comfort, shock, grief, and loss.

That feeling of your milk finally coming in,
When you were told that feeding would only “delay the inevitable”.
That feeling of your world caving in,
“Your son is brain dead”.

You spent his first Christmas,
Expecting every breath to be his last.
You removed yourself from him emotionally,
To protect yourself,
To make your heart hurt a little less.

You want to forget how that feels.
You want to forget.

World Cerebral Palsy Day

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In honor of World Cerebral Palsy day, which was…um….yesterday (I suck at blogging), I present to you,

    14 Reasons Why Having A Child With Severe CP Can Be Kind Of Awesome:

1) You don’t have to worry about him climbing out of the crib.

2) He won’t run away from you at the store.

3) He won’t yell embarrassing things while you are in public.

4) When he is little, people always assume that he is tired and won’t bug you (for the most part).

5) It’s always interesting when someone puts 2 and 4 together and asks you if your child has CP…because they usually have a child or close relative with CP as well.

6) A lot of the equipment out there can be pretty cool.

7) You can clean without him coming behind you and making a mess again.

8) You can sort of control the amount of food that doesn’t go in his mouth…he is strapped in and doesn’t have full use of his hands to push away…. Spoon Of Food – 1, Baby – 0, Mess – Minimal.

9) He can’t get out of bed to wake you up.

10) You find a strange sense of community with other special needs parents, and can easily relate to them even if their child doesn’t have CP.

11) He doesn’t get sick because he doesn’t put things in his mouth.

12) Every milestone means more and you don’t take his abilities for granted.

13) Every smile, laugh, or giggle lights up the room and brightens a day.

14) You wake up every morning and know that he is lucky to be alive to share that day with you.

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