Sunday 3 July 2011

March 2010- 1st birthday and the rollercoaster begins again

1/3
Been very busy lately..
Jazz was in hospital again the weekend before last.  Mild bronchiolitis again, only 1 night this time thank goodness!
She's been a bitch to feed, but is happy, active and well hydrated so no ones too concerned.  She has a pattern of losing weight one week and gaining the next. 
While we were in hospital they told me I needed to prepare for winter- everyone has to have the flu shot and vaccinations up to date.  So, of course, the ex-husband is kicking up a stink and wont allow the boys to be vaccinated (despite the fact that they are old enough that there will be no extremely adverse reactions)  he said he didnt care if Jasmine died of a preventable disease.  He eventually agreed, but wants the doctors number so he can threaten her with litigation....wanker

Jazz started crawling yesterday!!!  Real crawling!!  Very jerky in her right leg.....quite odd to watch.
Her first tooth is almost through and really giving her hell, I think thats definately contributing to her naughty feeding behaviour!!

7/3

Jazzies first tooth is juuuuuuust through!!  My god she struggled getting that!!  And she's had really nasty nappy rash for the past 3 days from it!
Shes a bit unsettled today...wondering if her next tooth is on the move
She's a funny girl, she likes to crawl/climb over things and she can open the baby gate and come into the kitchen if its not latched properly.

23/3
What a shit time we've been having!!
On the 15th march- the night before her 1st birthday we got the call from Nick to say Jazz could come off oxygen all together!!!  It was so exciting, what a great birthday present!  She had a good night with no oxygen, but on the morning of her birthday she woke sounding like a little freight train.
The kids gave her her birthday pressies, then mum got them ready for school while Jazz and I headed to Monash.
We got to Monash at 10am and she was pretty much admitted straight away and put back on oxygen.  As there were no beds available, we spent 24 hours in emergency, poor little poppet, what a crappy birthday.  I bought her a hocolate muffin from Zoukis and sang happy birthday to her....but the muffin was stale...  :(
While we were there she started doing this wierd thing with her eyes, they'd roll back in her head, it was really odd. 
She kept doing it more and more frequently over the time weve been here, I kept telling the nurses but none had seen it so I think they kind of put it down to me being a paranoid mum, but eventually she had a proper but thankfully brief siezure in front of a nurse.  Turns out the eye rolls are some sort of siezure.

She was put straight onto half a litre of oxygen (usually on an eighth) as soon as we got into emergency.  Since Tuesday she's been on o2 and has gone up to 3 quarters of a litre and is currently on half a litre when asleep and a quarter when awake.  Its Tuesday again now, 1 week later.  Marc, the respiratory consultant is happy for her to go home if we can get an oximeter!!  Fingers crossed!!  Hopefully we'll see the neeurologist today and she is booked in for an eeg.  She hit another milestone in hospital- she pulls herself up to stand!
And also got her second tooth!
The neurologist didnt show up and no one seemed to know anything about it!!  Later they said she'd be coming for the eeg as an outpatient, so I cracked the shits and spoke to Nick.  Neurology sent a lacky up, we got no joy, but Marc said she IS booked for the EEg even though everyone else says shes not.

As far as respiratory goes, jazz will still be here for another 3-4 days, she's improving, but slowly.  Nick wants her on 4 hrly ventolin and shes on a steroid inhalent twice a day.
Had the EEG this afternoon, hopefully we'll get some answers!

25/3

Well, the EEG came back normal....which is great that its not epilepsy...but it still doesnt give us any answers!
Bac and Ava, and Cushla and the twins came in to visit today, it was great!!
Later on Shweeta came in with Jay, hes so big and very gorgeous!

Had a bloody stupid nurse just stand and watch Jazz desatting to 82!!  I told him to check her sats probe while I checked the prongs and connections.  He had to turn her up to a litre and still she desatted, in the end, she needed a suction, poor thing.  Bloody stupid nurse, lucky I'm in here!!!

26/3

Jazz is having really nasty coughing, choking fits.  Shes coughing up mucous which the sounds like its choking her, she had been getting better so I dont know if the cold has freshened or shes picked up something else.
Had to have all her mucous suctioned out again.
She had a big eye rolling episode in front of a njurse today.

Shes very, very hyper, especially when she has the ventolin!!  and spent half the day moving. beeping and blowing raspberries, then got extremely tired and slept from 6-8, then had ventolin and bottle and went straight back to sleep.  Unsettled and coughing all night though.

30/3

Yesterday we were told we were ok to go to the playroom for the 'smile day' festivities with NOVA and the clown doctors.  Jazz got a hannah montana purse that she loved chewing on!
Had to race up to the servo last night while Jazz was asleep.  Turns out the little bugger power napped and when I returned she was surrounded by nurses and absolutely hysterical!  They hadnt been able to calm her at all and Russell said she had herself so hysterical that she desatted to 50!!!  Mums girl!!

Today shes having lots of coughing and choking fits and has needed suctioning quite a few times in order to reathe!!  Poor little thing goes bright crimson!  A couple of times the o2 has had to go up to 1 litre, suction needed and an o2 mask wafted in front of her face as well!!  The other kids are sick now.  Kai has a temp of 39.1 and headaches and Paige is 39.3 with headaches.

Shes been 'cruising' around her cot a lot too and wont know herself when she gets home!!

At around 2pm they told me the NPA (nasal pharangeal aspirate, in laymans terms, snot swab) results were back and Jazz had contracted whooping cough since she was admitted.

When you're beginning to graduate through the bays on your way home from NICU, you are warned that the first winter especially will be rough, but you really dont understand ( or I didnt) that what they really mean is that just because you leave hospital, it doesnt mean the rollercoaster ride has ended.  It takes some new twists and turns, and dips and dives...and sometimes climbs to amazing heights....but you dont get off the ride yet.....

No comments:

Post a Comment