Flynns update, its a rollercoaster!
Nov 21st 2006, 4:00 am
#46
Never going back
Joined: Mar 2005
Location: New South Wales!!!!!!!
Posts: 3,656
Re: Flynns update, its a rollercoaster!
my thoughts and prayers are with you all at this time.
lets hope 2007 will be a great year for all of you.
keep positive and each day is a new day and flynn will get stronger.
take care and look after each other.
xxxx
lets hope 2007 will be a great year for all of you.
keep positive and each day is a new day and flynn will get stronger.
take care and look after each other.
xxxx
Nov 21st 2006, 6:28 am
#47
Joined: Sep 2005
Location: Mount Tamborine
Posts: 17,426
Re: Flynns update, its a rollercoaster!
Originally Posted by Wendy
This is how I feel too. I've been sat with tears in my eyes thinking of something to say since 7:30am.
There just aren't any words except we are thinking of you and praying for the little man.
There just aren't any words except we are thinking of you and praying for the little man.
Thoughts are with you and yours Hevs xxxx
Nov 21st 2006, 7:15 am
#48
On the Dark Side :-)
Joined: Apr 2004
Location: South Wales to New South Wales!
Posts: 3,065
Re: Flynns update, its a rollercoaster!
God what the hell do you say in these situations? I have no idea. I have tears in my eyes but I know in my heart that this little man is gonna pull through - how could he not with you two fighters as parents?
God bless you little Flynn
God bless you little Flynn
Nov 21st 2006, 7:19 am
#49
Lost in BE Cyberspace
Joined: Mar 2003
Posts: 9,397
Re: Flynns update, its a rollercoaster!
I don't believe in prayers but I am hoping all turns out well in the end.
Nov 21st 2006, 7:21 am
#50
Lost in BE Cyberspace
Joined: Nov 2005
Location: at the bottom of a wine glass
Posts: 28,176
Re: Flynns update, its a rollercoaster!
Originally Posted by Wol
I don't believe in prayers but I am hoping all turns out well in the end.
I don't either, but they do seem to be working so far, so I'll keep on doing it for now
Nov 21st 2006, 7:22 am
#51
Joined: Sep 2005
Location: Mount Tamborine
Posts: 17,426
Re: Flynns update, its a rollercoaster!
Originally Posted by Wendy
I don't either, but they do seem to be working so far, so I'll keep on doing it for now
Nov 21st 2006, 9:33 am
#52
BE Forum Addict
Joined: Apr 2005
Location: On the edge of the Dandenongs, Melbourne
Posts: 2,387
Re: Flynns update, its a rollercoaster!
Our prayers are most definitely with you...
Nov 21st 2006, 11:05 pm
#53
High in the Dandenongs
Thread Starter
Joined: Apr 2003
Location: Listening to Puffing Billy
Posts: 9,183
Re: Flynns update, its a rollercoaster!
Yesterday was full on.
He was having loads of braddys again. So they decided to stop feeds. Again. Then they did heaps of blood tests. Again. (for infection, full blood counts, potassium level etc etc) And changed his IV site. Again. Then they decided to get urine sample which involves placing a full on sticky bag around his bits. We tried 3 times and it kept leaking. So three sets of pulling off what looks like sellotape around his bits, god did he scream no-shake_head.gif Hopefully they got it sorted after i left last night! He had a chest x ray which showed up a small patch of lung disease which they were very surprised at cos they thought he was doing so well with all of that, so they upped his CPAP (forced air to the lungs so they don't have to work so hard) and that helped his breathing even out a bit. But he will grow out of that.
By 3pm all tests had finished and he was resting, finally. Then at 4pm all hell broke loose. He started twitching and flaying all over the place, his nurse said "oh its just hiccups" I'm like "it ISN'T HICCUPS! hes not been fed for four hours. Please get a DR. NOW!!
The Dr came and did that face where the eyes go wide and the mouth twitched downwards, the like "oh...... F uck" face! So we tried to calm him and he wasn't having any of in in fact he was worse. So for the third time that day his heel was stabbed and we managed to get more blood from him and it gets read straight away. No sign of a seizure (raised PH levels) Also his heart resp and Sat's were perfect. Like the MOST perfect they had been.
Then Dr Jerry goes to get Martina who's the boss of all of the consultants and i nearly died. I actually left the room and stood outside pacing like some mental patient. She then came out and told me to take some breaths and listen. She said because of his bleed we are tending to jump everytime he does. Some babies are twitchy and that he'd had every test known to man that day and nothing had shown up. The culture dish still wasn't growing meningitis and his blood was free of infection. She had just measured his head and it was the same and his fontanelle's were still soft, no signs of swelling. She promised to do another ultra sound today to check for any change and if needs be they will do another lumbar this morning.
I have just rung up (jeez it was hard!) and they said he's been peaceful most of the night with no real twitches just normal movement. However hes become irritable this morning and they think he's hungry so have begun small feeds again. I'm obviously concerned that the irritability is the beginning of hydrocephalus again, but if it is they will know by the time we get there and will be doing another lumbar anyway, so i'm feeling ok with that.
Here goes, wish us luck.....
xxxxx
He was having loads of braddys again. So they decided to stop feeds. Again. Then they did heaps of blood tests. Again. (for infection, full blood counts, potassium level etc etc) And changed his IV site. Again. Then they decided to get urine sample which involves placing a full on sticky bag around his bits. We tried 3 times and it kept leaking. So three sets of pulling off what looks like sellotape around his bits, god did he scream no-shake_head.gif Hopefully they got it sorted after i left last night! He had a chest x ray which showed up a small patch of lung disease which they were very surprised at cos they thought he was doing so well with all of that, so they upped his CPAP (forced air to the lungs so they don't have to work so hard) and that helped his breathing even out a bit. But he will grow out of that.
By 3pm all tests had finished and he was resting, finally. Then at 4pm all hell broke loose. He started twitching and flaying all over the place, his nurse said "oh its just hiccups" I'm like "it ISN'T HICCUPS! hes not been fed for four hours. Please get a DR. NOW!!
The Dr came and did that face where the eyes go wide and the mouth twitched downwards, the like "oh...... F uck" face! So we tried to calm him and he wasn't having any of in in fact he was worse. So for the third time that day his heel was stabbed and we managed to get more blood from him and it gets read straight away. No sign of a seizure (raised PH levels) Also his heart resp and Sat's were perfect. Like the MOST perfect they had been.
Then Dr Jerry goes to get Martina who's the boss of all of the consultants and i nearly died. I actually left the room and stood outside pacing like some mental patient. She then came out and told me to take some breaths and listen. She said because of his bleed we are tending to jump everytime he does. Some babies are twitchy and that he'd had every test known to man that day and nothing had shown up. The culture dish still wasn't growing meningitis and his blood was free of infection. She had just measured his head and it was the same and his fontanelle's were still soft, no signs of swelling. She promised to do another ultra sound today to check for any change and if needs be they will do another lumbar this morning.
I have just rung up (jeez it was hard!) and they said he's been peaceful most of the night with no real twitches just normal movement. However hes become irritable this morning and they think he's hungry so have begun small feeds again. I'm obviously concerned that the irritability is the beginning of hydrocephalus again, but if it is they will know by the time we get there and will be doing another lumbar anyway, so i'm feeling ok with that.
Here goes, wish us luck.....
xxxxx
Nov 21st 2006, 11:19 pm
#54
Crazy Cat Lady
Joined: Apr 2004
Posts: 65,493
Re: Flynns update, its a rollercoaster!
I don't have a bleeding clue how you are dealing with this hon, I know automatic pilot kicks in but shit you must be completely knackered
It only seems a week ago that you were going through the same desperate worries about Matt and look at him now. Flynn is part of both of you and will get better. The doctors and nurses are well on the case. My Heather is asking everyday but says "don't say anything if it's not good" so I look for any slight "positive" piece and tell her that and there has always been something, even if it's just how you are able to calm him sometimes.
Take care and try and rest when you can. You know we are all here for you.
It only seems a week ago that you were going through the same desperate worries about Matt and look at him now. Flynn is part of both of you and will get better. The doctors and nurses are well on the case. My Heather is asking everyday but says "don't say anything if it's not good" so I look for any slight "positive" piece and tell her that and there has always been something, even if it's just how you are able to calm him sometimes.
Take care and try and rest when you can. You know we are all here for you.
Nov 21st 2006, 11:31 pm
#55
going home!!
Joined: Apr 2006
Posts: 525
Re: Flynns update, its a rollercoaster!
Originally Posted by hevs
Yesterday was full on.
He was having loads of braddys again. So they decided to stop feeds. Again. Then they did heaps of blood tests. Again. (for infection, full blood counts, potassium level etc etc) And changed his IV site. Again. Then they decided to get urine sample which involves placing a full on sticky bag around his bits. We tried 3 times and it kept leaking. So three sets of pulling off what looks like sellotape around his bits, god did he scream no-shake_head.gif Hopefully they got it sorted after i left last night! He had a chest x ray which showed up a small patch of lung disease which they were very surprised at cos they thought he was doing so well with all of that, so they upped his CPAP (forced air to the lungs so they don't have to work so hard) and that helped his breathing even out a bit. But he will grow out of that.
By 3pm all tests had finished and he was resting, finally. Then at 4pm all hell broke loose. He started twitching and flaying all over the place, his nurse said "oh its just hiccups" I'm like "it ISN'T HICCUPS! hes not been fed for four hours. Please get a DR. NOW!!
The Dr came and did that face where the eyes go wide and the mouth twitched downwards, the like "oh...... F uck" face! So we tried to calm him and he wasn't having any of in in fact he was worse. So for the third time that day his heel was stabbed and we managed to get more blood from him and it gets read straight away. No sign of a seizure (raised PH levels) Also his heart resp and Sat's were perfect. Like the MOST perfect they had been.
Then Dr Jerry goes to get Martina who's the boss of all of the consultants and i nearly died. I actually left the room and stood outside pacing like some mental patient. She then came out and told me to take some breaths and listen. She said because of his bleed we are tending to jump everytime he does. Some babies are twitchy and that he'd had every test known to man that day and nothing had shown up. The culture dish still wasn't growing meningitis and his blood was free of infection. She had just measured his head and it was the same and his fontanelle's were still soft, no signs of swelling. She promised to do another ultra sound today to check for any change and if needs be they will do another lumbar this morning.
I have just rung up (jeez it was hard!) and they said he's been peaceful most of the night with no real twitches just normal movement. However hes become irritable this morning and they think he's hungry so have begun small feeds again. I'm obviously concerned that the irritability is the beginning of hydrocephalus again, but if it is they will know by the time we get there and will be doing another lumbar anyway, so i'm feeling ok with that.
Here goes, wish us luck.....
xxxxx
He was having loads of braddys again. So they decided to stop feeds. Again. Then they did heaps of blood tests. Again. (for infection, full blood counts, potassium level etc etc) And changed his IV site. Again. Then they decided to get urine sample which involves placing a full on sticky bag around his bits. We tried 3 times and it kept leaking. So three sets of pulling off what looks like sellotape around his bits, god did he scream no-shake_head.gif Hopefully they got it sorted after i left last night! He had a chest x ray which showed up a small patch of lung disease which they were very surprised at cos they thought he was doing so well with all of that, so they upped his CPAP (forced air to the lungs so they don't have to work so hard) and that helped his breathing even out a bit. But he will grow out of that.
By 3pm all tests had finished and he was resting, finally. Then at 4pm all hell broke loose. He started twitching and flaying all over the place, his nurse said "oh its just hiccups" I'm like "it ISN'T HICCUPS! hes not been fed for four hours. Please get a DR. NOW!!
The Dr came and did that face where the eyes go wide and the mouth twitched downwards, the like "oh...... F uck" face! So we tried to calm him and he wasn't having any of in in fact he was worse. So for the third time that day his heel was stabbed and we managed to get more blood from him and it gets read straight away. No sign of a seizure (raised PH levels) Also his heart resp and Sat's were perfect. Like the MOST perfect they had been.
Then Dr Jerry goes to get Martina who's the boss of all of the consultants and i nearly died. I actually left the room and stood outside pacing like some mental patient. She then came out and told me to take some breaths and listen. She said because of his bleed we are tending to jump everytime he does. Some babies are twitchy and that he'd had every test known to man that day and nothing had shown up. The culture dish still wasn't growing meningitis and his blood was free of infection. She had just measured his head and it was the same and his fontanelle's were still soft, no signs of swelling. She promised to do another ultra sound today to check for any change and if needs be they will do another lumbar this morning.
I have just rung up (jeez it was hard!) and they said he's been peaceful most of the night with no real twitches just normal movement. However hes become irritable this morning and they think he's hungry so have begun small feeds again. I'm obviously concerned that the irritability is the beginning of hydrocephalus again, but if it is they will know by the time we get there and will be doing another lumbar anyway, so i'm feeling ok with that.
Here goes, wish us luck.....
xxxxx
my heart goes out to you all at this difficult time
im sat here thinking what to put, and words dont seem enough...........................
big hugs me darling
Nov 21st 2006, 11:33 pm
#56
Account Closed
Joined: Mar 2006
Posts: 10,158
Re: Flynns update, its a rollercoaster!
God, the poor little fella. Fancy having all those tests... I'm not surprised he's twitchy with it all... It's bloody stressful.
Hevs, hang in there hon. He's still here and still fighting and every day is a plus.
xxx
Hevs, hang in there hon. He's still here and still fighting and every day is a plus.
xxx
Nov 21st 2006, 11:48 pm
#57
......in the sand !
Joined: Nov 2004
Location: Perth, WA :)
Posts: 4,421
Re: Flynns update, its a rollercoaster!
More love and positive thoughts to all
Nov 21st 2006, 11:52 pm
#58
BE Forum Addict
Joined: Jul 2003
Location: Cairns
Posts: 3,918
Re: Flynns update, its a rollercoaster!
Wishing you all the best and sending positive thoughts and hugs your way. (((((((( ))))))))
))))))))
Nov 22nd 2006, 12:00 am
#59
BE Enthusiast
Joined: Jun 2005
Posts: 389
Re: Flynns update, its a rollercoaster!
Any problems we are having with selling houses, waiting for Visas and what not, pail into absolute insignificance when we read the updates to your child, I think you're holding up amazingly well and retell your day with amazing clarity, I wouldnt have taken half of it in with the worry.
Who knows but heres to hoping the power of positive thought through 100s of BE readers helps the situation.
Best Regards
Who knows but heres to hoping the power of positive thought through 100s of BE readers helps the situation.
Best Regards
Nov 22nd 2006, 1:04 am
#60
Lost in BE Cyberspace
Joined: Oct 2005
Location: Hill overlooking the SE Melbourne suburbs
Posts: 16,622
Re: Flynns update, its a rollercoaster!
Hevs.. I got a tear in my eye too the other day as I was the same size when I was born.
So stay with it mate. It's the doctor's job to panic over every sign.
bm
So stay with it mate. It's the doctor's job to panic over every sign.
bm