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
Thursday, November 11, 2010
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
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
Tuesday, July 13, 2010
Sunday July 4th 2010
Hi
Jalan is a bit sick today
Her cough sounds very bronchitisy (sp)
She has been diagnosed with asthma now as well as CF
Her temp has been running around 38.4 -38.8 today
She has had panadol and it is coming down a bit but she is still very red faced and looking a bit pale underneath
Rang her paediatrician this morning and he said the way she is breathing and behaving is totally normal as this virus runs its course
I don't like the lack energy and the fact she is just lying around
all the time
It is just not her
It is good in a way for me as she is not bouncing of the walls and furniture like usual
Isn't it funny we get tired by all the energy but yet when it is not there we worry
Wonder where the happy medium is
She has another appointment with her paediatrician on Wednesday so hopefully by then she will be much better
Shes lying quietly on the couch watching Charlottes Web
Isn't it amazing how classic movies never go out of date
Luv Deb
Jalan is a bit sick today
Her cough sounds very bronchitisy (sp)
She has been diagnosed with asthma now as well as CF
Her temp has been running around 38.4 -38.8 today
She has had panadol and it is coming down a bit but she is still very red faced and looking a bit pale underneath
Rang her paediatrician this morning and he said the way she is breathing and behaving is totally normal as this virus runs its course
I don't like the lack energy and the fact she is just lying around
all the time
It is just not her
It is good in a way for me as she is not bouncing of the walls and furniture like usual
Isn't it funny we get tired by all the energy but yet when it is not there we worry
Wonder where the happy medium is
She has another appointment with her paediatrician on Wednesday so hopefully by then she will be much better
Shes lying quietly on the couch watching Charlottes Web
Isn't it amazing how classic movies never go out of date
Luv Deb
Jalan is a pain
Hi
Jalan is into her 7th day of her tune up
We have become terrible parents and have left her in the care of the hospital for a few hours
She is misbehaving and expecting us to amuse her every waking hour
She does not even want us to go out and have a coffee a break or anything
She has been totally spoiled by everyone as usual and has all the nurses wrapped around her little finger
Her boredom buster bag was full of lots of goodies and she loved it Thank you CFQ
Nana brought her a new DVD a jigsaw puzzle a book and lots of packets of chippies
Her friend Benjamin and his mum came up on Friday and brought her a Dora scrap book and new pens and a lovely large card from her day care with all the kids pics on it
This morning she was taken of her nebulised ventolin which is a good sign
Heres hoping it is for a long time
She had blood tests on Monday morning and her Tobi levels are a bit low so they are increasing the dosage
Just waiting on the sputum cultures and the rest of the blood tests now
It was Daddys 40th birthday yesterday so I busted him out and took him to Sizzlers for dinner last night
Rowan baby sat for us on the condition we brought him back the Sizzler after dinner mints
He felt it wasn't really fair but tough hahahahha
Dr Prebble is happy with her and how she is going
Tonight we are trying for a first of waiting til she is asleep and then both coming home for the night and Daddy will go back up around 7 in the morning just before she wakes up
We need our sanity as well
Her cough seems to be improving a bit but as usual time will tell
Hopefully her chest infection is gone totally
Luv a very tired mum
Luv Deb
Jalan is into her 7th day of her tune up
We have become terrible parents and have left her in the care of the hospital for a few hours
She is misbehaving and expecting us to amuse her every waking hour
She does not even want us to go out and have a coffee a break or anything
She has been totally spoiled by everyone as usual and has all the nurses wrapped around her little finger
Her boredom buster bag was full of lots of goodies and she loved it Thank you CFQ
Nana brought her a new DVD a jigsaw puzzle a book and lots of packets of chippies
Her friend Benjamin and his mum came up on Friday and brought her a Dora scrap book and new pens and a lovely large card from her day care with all the kids pics on it
This morning she was taken of her nebulised ventolin which is a good sign
Heres hoping it is for a long time
She had blood tests on Monday morning and her Tobi levels are a bit low so they are increasing the dosage
Just waiting on the sputum cultures and the rest of the blood tests now
It was Daddys 40th birthday yesterday so I busted him out and took him to Sizzlers for dinner last night
Rowan baby sat for us on the condition we brought him back the Sizzler after dinner mints
He felt it wasn't really fair but tough hahahahha
Dr Prebble is happy with her and how she is going
Tonight we are trying for a first of waiting til she is asleep and then both coming home for the night and Daddy will go back up around 7 in the morning just before she wakes up
We need our sanity as well
Her cough seems to be improving a bit but as usual time will tell
Hopefully her chest infection is gone totally
Luv a very tired mum
Luv Deb
Sunday, July 11, 2010
The Beginning
Hi
Let me take you back today to where it all started
In November 2004 after lots of practicing and not falling pregnant we decided to look further into things
Knowing it couldn't be me (hahahahah) as I already had 2 children to a previous relationship we went to the doctors for Darren
He was sent to do a sperm count test
For those that have never experienced one of these for the male it is quite embarrasing
For the female it is hilarious every step of the way
Darren was given a specimen jar (yep the small jars with yellow lids) and was told to put a specimen of sperm into the jar and keep it warm and have it at the blood bank within 15 minutes
Seeing that we lived just 15 minutes away we decided to do it at home
Probably didnt help with me throwing evil visual comments at Darren while he was doing the obvious deed.
He comes out of the room and we jump into the car racing to St Andrews collection lab He had it between his legs to keep it warm hahahha
We head to the door of the collection place where on the door it says pull Needless to say i fall over laughing so hard Darren is red as a beetroot
We go up to the counter and Darren quietly says what he is here for and the assistant seening me also burst out laughing
She tries to be professional to save him the extra embarrasment i suppose but because of me she has a fit of the giggles too
After we leave we signs saying "pull" everywhere and every time i look at Darren and start laughing again
A few days later we get a call from the doctor and head of for a appointment
The test has come back that Darren has a low sperm count like almost non existant so we get a appointment for a Uroligist in January
In January i get sick at work and have to have some time of as I have caught Glandular Fever
We go to the Urologist appointment and he wants further tests done but from what he can see we could not have a baby unless we use IVF
I am quite ummm excited as this means we wont have another child but i would not have denied Darren a child if it was possible naturally
Bear in mind i was going to be 39 in a few months and that in my mind was so close to my cut of date of 40 regardless for having kids
By halfway through January i wasn't feeling any better and still very exhausted from the glandular fever
Darren with his crazy sense of humour suggested i get a pregnancy test as i might be pregnant
What a joke but to humour him i buy one and for some strange reason two pink lines appear
I am pregnant against ALL odds
We get a letter from the urologist asking why we havent gone back for the extra tests and we ring and say i'm pregnant
It took til after Jalan was born and we took her in for this idea to actually sink into the urologist head I think he thought that i must have had an affair or something
They just kept sending us letters
Part way through the pregnancy I started on Clexane needles due to the factor V leiden deficiency I have
At about 8 weeks i had a bleed and went for a scan as we thought we were loosing the baby
Have no idea what caused it but she looked like a peanut so that was her nickname throughout the pregnancy
At 3 months i gave up work due to being too sick to go and very exhausted all the time
Peppermint chocolate worked wonders for heartburn and nausea
At 6 months she decided she was coming early and i was put into hospital and given needles that really hurt into my butt but luckily enough they stopped the early labour
At my appointments they kept saying that she was a bit on the big side and were worried about Downs syndrome and the usual stuff with being a elder mother
I was also diagnosed with pregnancy induced diabetes so really had to watch what i ate
My obstetrician/gynacologist Dr Cerqui said that of all his ladies i was the one he felt the sorriest for as i was huge and very uncomfortable
He decided to induce her 2 weeks early and we were trying to decide whether to go natural or via caeser
Jalan decided for us by going breech the week before i was to be induced
Saved us deciding
On the 25th October we headed into the hospital took some pictures of my enormously fat stomach then headed down to the operating theatre to be prepped for my caeser
Jalan came into this world weighing in at 11lb 4oz Dr Cerqui said that he was sending her to the nursery to start work.....she was huge and had a squashed nose and was curled up due to lack of space
She would not latch on to feed and her paediatrician Dr Prebble called her a lazy suck
She had to go to special care nursery at night time as they tried to feed her
She was not having a bar of it and was fed by syringe half the time trying to get something into her
They thought it was because of the diabetes and because she was so big
Darren went to get her one time and she was next to a real premmie weighing in at about 500g
He said she looked gigantic
We put her on a bottle so that at least she would get fed and i would not have to spend the day being milked all the time
Nurses and people kept coming in from everywhere to see this big beautiful baby They were amazed at her size
We took her home on day 5
Life was a bit hard as she still wouldnt feed properly but she was getting there
They suggested getting her a dummy to try develop the sucking reflex
She did a lot of yelling and screaming and pulling her legs up in pain
On day 10 we received a phone call that caused the world to drop out from under us and life as we knew it to be changed forever
Luv Deb
Let me take you back today to where it all started
In November 2004 after lots of practicing and not falling pregnant we decided to look further into things
Knowing it couldn't be me (hahahahah) as I already had 2 children to a previous relationship we went to the doctors for Darren
He was sent to do a sperm count test
For those that have never experienced one of these for the male it is quite embarrasing
For the female it is hilarious every step of the way
Darren was given a specimen jar (yep the small jars with yellow lids) and was told to put a specimen of sperm into the jar and keep it warm and have it at the blood bank within 15 minutes
Seeing that we lived just 15 minutes away we decided to do it at home
Probably didnt help with me throwing evil visual comments at Darren while he was doing the obvious deed.
He comes out of the room and we jump into the car racing to St Andrews collection lab He had it between his legs to keep it warm hahahha
We head to the door of the collection place where on the door it says pull Needless to say i fall over laughing so hard Darren is red as a beetroot
We go up to the counter and Darren quietly says what he is here for and the assistant seening me also burst out laughing
She tries to be professional to save him the extra embarrasment i suppose but because of me she has a fit of the giggles too
After we leave we signs saying "pull" everywhere and every time i look at Darren and start laughing again
A few days later we get a call from the doctor and head of for a appointment
The test has come back that Darren has a low sperm count like almost non existant so we get a appointment for a Uroligist in January
In January i get sick at work and have to have some time of as I have caught Glandular Fever
We go to the Urologist appointment and he wants further tests done but from what he can see we could not have a baby unless we use IVF
I am quite ummm excited as this means we wont have another child but i would not have denied Darren a child if it was possible naturally
Bear in mind i was going to be 39 in a few months and that in my mind was so close to my cut of date of 40 regardless for having kids
By halfway through January i wasn't feeling any better and still very exhausted from the glandular fever
Darren with his crazy sense of humour suggested i get a pregnancy test as i might be pregnant
What a joke but to humour him i buy one and for some strange reason two pink lines appear
I am pregnant against ALL odds
We get a letter from the urologist asking why we havent gone back for the extra tests and we ring and say i'm pregnant
It took til after Jalan was born and we took her in for this idea to actually sink into the urologist head I think he thought that i must have had an affair or something
They just kept sending us letters
Part way through the pregnancy I started on Clexane needles due to the factor V leiden deficiency I have
At about 8 weeks i had a bleed and went for a scan as we thought we were loosing the baby
Have no idea what caused it but she looked like a peanut so that was her nickname throughout the pregnancy
At 3 months i gave up work due to being too sick to go and very exhausted all the time
Peppermint chocolate worked wonders for heartburn and nausea
At 6 months she decided she was coming early and i was put into hospital and given needles that really hurt into my butt but luckily enough they stopped the early labour
At my appointments they kept saying that she was a bit on the big side and were worried about Downs syndrome and the usual stuff with being a elder mother
I was also diagnosed with pregnancy induced diabetes so really had to watch what i ate
My obstetrician/gynacologist Dr Cerqui said that of all his ladies i was the one he felt the sorriest for as i was huge and very uncomfortable
He decided to induce her 2 weeks early and we were trying to decide whether to go natural or via caeser
Jalan decided for us by going breech the week before i was to be induced
Saved us deciding
On the 25th October we headed into the hospital took some pictures of my enormously fat stomach then headed down to the operating theatre to be prepped for my caeser
Jalan came into this world weighing in at 11lb 4oz Dr Cerqui said that he was sending her to the nursery to start work.....she was huge and had a squashed nose and was curled up due to lack of space
She would not latch on to feed and her paediatrician Dr Prebble called her a lazy suck
She had to go to special care nursery at night time as they tried to feed her
She was not having a bar of it and was fed by syringe half the time trying to get something into her
They thought it was because of the diabetes and because she was so big
Darren went to get her one time and she was next to a real premmie weighing in at about 500g
He said she looked gigantic
We put her on a bottle so that at least she would get fed and i would not have to spend the day being milked all the time
Nurses and people kept coming in from everywhere to see this big beautiful baby They were amazed at her size
We took her home on day 5
Life was a bit hard as she still wouldnt feed properly but she was getting there
They suggested getting her a dummy to try develop the sucking reflex
She did a lot of yelling and screaming and pulling her legs up in pain
On day 10 we received a phone call that caused the world to drop out from under us and life as we knew it to be changed forever
Luv Deb
Jalan's Journey
Hi
I have decided to start this blog for my daughter Jalan who has Cystic Fibrosis
We call it Jalan's Journey as it is a journey and a long one at that
Like a journey it has it's ups and downs
Its valleys and its mountains
It has a beginning a middle and a destination
We hope with all our being that the destination is a long way away both for her and us as her parents
We welcome you to share our journey and join us along the long road
We invite you to share with us each step of the way
We invite you to become a loved member of our extended family
To understand that some days you may not like what we say and some days we may not like what you say but to love each other unconditionally
Luv Deb
I have decided to start this blog for my daughter Jalan who has Cystic Fibrosis
We call it Jalan's Journey as it is a journey and a long one at that
Like a journey it has it's ups and downs
Its valleys and its mountains
It has a beginning a middle and a destination
We hope with all our being that the destination is a long way away both for her and us as her parents
We welcome you to share our journey and join us along the long road
We invite you to share with us each step of the way
We invite you to become a loved member of our extended family
To understand that some days you may not like what we say and some days we may not like what you say but to love each other unconditionally
Luv Deb
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