The Call We Dreaded Has Come

Today takes us to the 12th October

In the morning Darren says to me "Jalan's cough swab must be clear as we haven't heard from anyone" Usually if something is wrong they ring us on the Monday afternoon following cinic.
I said "We are not in the clear yet sometimes Monday is too hectic for them to ring"
Famous last words or mothers intuition

The phone rings and it is Peta our CF nurse letting us know that Jalan has cultured her first dose of Pseudomonas and is booked to come in on Thursday for a pic line to be inserted and IV drugs to be started.
She said i didnt ring Monday as i wanted to be sure we had a theatre and a bed

Needless to say we are a bit shattered about this call

Thursday we head to the hospital We have to be there by 10am and Jalan has to be nil by mouth

We book in and all Jalan wants is a drink so they give her a small sip of glucolyte
We are shown to our home (bed) for the next two weeks.

We unpack our gear and get set up
Soon the starlight guys come along with a guy with a guitar and he sings to Jalan



At 5 to one the anaesthitist then comes around to collect her and off we go downstairs to Theatre

I go in with her and hold her hand as they tell her what is happening and gives her a pink face mask smelling like strawberry ice cream She asks if she can keep the mask to use on her baby dolls as they all have Cystic Fibrosis as well and she needs it for their operations They say she can and slowly they turn up the gas and she goes limp and falls asleep


We go and wait in the parents waiting room for her
2 hours later I go to find out what is happening and they say she has just come out of theatre and is in recovery

About half an hour later we get called and she is lying there very docile and is happy to see us Usually we have to spend half and hour or so calming her down as she is usually screaming and carrying on

We stay in recovery for a while then we go of to her room and she is put in her bed once again

She sleeps a lot on and off and has a bit of a temperature

Darren heads home and i settle in to begin the admission

I give her one of her birthday presents early to try cheer her up a little. It is a Dora music set with tamborine maraccas drum cymbals and a flute She smiles and is happy for about 10 minutes then gives it all back to me to pack up and snuggles down for a sleep

Her dinner comes and she tries to eat a bit but we end up with it all coming back up again
She is not quite ready to eat and has a high temperature so they give her some panadol and keep a watch on her

She watches tv for a while and then slowly drifts off to sleep til morning


Luv Deb

Yearly review

On the third of October we went for Jalan's yearly review
Wow I cannot believe she is nearly 5 years old

We have a late appointment for it and surprise surprise there has been a mixup
When will we ever have a smooth yearly review

Our CF nurse gave radiology the information for Jalan's Ultrasound and her first CT scan of her lungs and their systems were down or some other excuse and they said they would do it later
Somehow in all this it never got booked in
They give us the paperwork to book it in and have it at a later date sometime between then and her next 3 month appointment
Not really a worry they say Ok for them but it is not their child that misses out and it is not them that is wondering what the results will bring
Due to the late appointment we decide to have the yearly blood tests done away from the hospital rather than sitting at adults waiting for over a hour with her

They send her straight to her first lung function and they show her how to blow through the machine They have candles that she is supposed to blow out on the screen
Jalan focuses on the candles and can't blow any of them out
She is too busy watching the candles to concentrate on blowing correctly

I get them to shut the candles down and then she starts to concentrate better but only blows in the 40's to 50's She is not blowing correctly yet and using her full lung capacity

We go of to the room and wait for all the people we have to see to come along and sit and wait and wait and wait
Eventually we get through most of the allied people and repeat the same thing again and again lol
We go off to xray for the usual yearly picture and Jalan stands there beautifully by herself once more
We head back to the room to wait

The physios come in and take a cough swab and check everything is ok We ask them about bubble pep but they tend to side step and brush it off

Finally the doctor (registrar) came in and he was one we had hardly ever seen before checks her over and we ask questions and half of them he cant answer so goes of to check with the respiratory team

We are nearly finished and he decides that he needs to talk to the team again and off he goes leaving us once again waiting
Now bear in mind at 12pm all the respiratory team go in for a meeting regardless of where they are at with the CF kids
Guess what it is 12pm so we are left waiting til after 1pm when they finish their meeting

Too bad we are by now starving and so is Jalan

Finally the doctor comes back with the scripts and everything we need Says she is good to go and see you in three months

Once again they ignore us about the fact i feel something is wrong and say she looks and sounds good

We leave and head off on our long journey home wondering why we don't change hospitals

On the way home we drop in on my dad and step mum then head home

Luv Deb