Flynns update, its a rollercoaster!
Nov 20th 2006, 11:49 am
#1
High in the Dandenongs
Thread Starter
Joined: Apr 2003
Location: Listening to Puffing Billy
Posts: 9,183
Flynns update, its a rollercoaster!
Flynn's latest escapade started on Friday when there was a marked difference in his Sat's (oxygen in his blood) and by the amount of "braddys" (major drops in heart rate) he was having. I went home very uneasy and sure enough on my arrival back to the hospital on Saturday morning all hell was breaking loose.
The main thing was that Flynn was jerking and twitching all over the place, his heart rate was through the roof as was his breathing and his Sat's were through the floor. It was totally heartbreaking to watch. (my brilliant friend Bordy timed his visit perfectly as ever and let me blither on and get myself together in time for the next onslaught)
They decided to do all the tests to check he was strong enough to start the heart medication. He has a PDA, basically a duct that is meant to close before birth hadn't (very common in premmies) and was definitely becoming more of a problem for him. They needed to check his clotting abilities because of him having the brain bleed they wanted to check that it wasn't an inherent fault before they started him on medication where one of the main side effects is bleeding! All came back good so he was all set to start the course Sunday all being well.
In the mean time they'd done another brain scan and found his ventricle to be larger and so they decided to do a lumbar puncure to drain some fluid out. However, it went all a bit wrong and they only got blood. They assured me it was "fresh" and not from his brain and that they would try again Sunday.
At this point they stopped his feeds to try to rest all of his organs and see if he'd calm down. He didn't.
Sunday morning came and i got to the hospital (poor Matt had to stay home again with the big kids and just be there for them. He has been fantastic and has given me some of the strength back that i gave him back in March!!
) to find them lumbar punching him again. I panicked and legged it out of there and ended up in the chapel and began something i have never done in my life, praying. I prayed my heart out......
They succeeded and got 8mls of spinal fluid out and sent it off for tests. They began his heart meds and i just watched and waited. He seemed to have periods of calm and periods of manicness, my heart was in my mouth.
Last night (Sunday) I was told by Clara (the positive consultant) that Flynn's spinal fluid (CSF) had come back with a high white cell count and that they feared that he had an infection. Yep. You guessed it! Meningitis. The next 48 hours he is classed as critical because if the infection takes hold his brain is going to take yet another hammering. She said i needed to stay positive but needed to be aware that things were at there lowest. She also asked me if she could call me in the night if there was a change for the worse. I was also warned that he could be intubated, ventilated and sedated upon our return this morning if his condition got any worse. He was also attached to a brain monitor to see if the spasms were in fact seizures and to determine the best form of treatment to give him. They started him on two extremely strong intravenous anti biotic and earlier in the day had begun the medication to close the duct in his heart. They decided to keep that going as its a six day course. The little man had an awful lot to fight.
We arrived this morning ready to face the worse. He was not ventilated but he was still fidgeting, though not as violently and eventually began to look fairly settled.
No Dr's came to grab us which I took as a good sign and we hoped for the best. However i was worried when they said no lumbar was to be repeated today. Obviously i was thinking Why? Is it a lost cause?
Anyway we went for a drink while the nurse did his cares and when we came back a Dr made his way over. He said he had news at which point my heart sank. He said that the culture that was sent away from the CSF 24 hours ago, the one with the high white cell count that indicated serious infection was, to this point, totally clear!! Also they had decided to hold off for the lumbar because he was beginning to settle and the ventricle size in this mornings brain scan was reduced!!! All of his blood tests were also clear of infection markers and he was much happier with his condition at this moment in time! I struggled to stop myself blubbing all over him.
He did tell me that although this is excellent news we still have a way to go. They will keep the brain monitor on for a bit just to observe. They will keep the CSF culture for another 24 hours and they will do a further brain scan in a couple of days. He says hes still not sure about the twitching but thinks its due to brain irritation from the swelling of the ventricle, the breaking down of the blood clot and the subsequent build up of CSF (hydrocephalus) It was Flynn's way of dealing with it and telling us that we needed to help him out pretty soon. His next brain scan wasn't due till Monday (today Infact) There were, during all of this, no further bleeds. We obviously are still in the dark to the outcome of all of this and what it means, but for today we are just pleased its over and relieved he seems more settled and that we live to fight another day.
Thank you all for of your prayers and positivity which i feel have got us through the last 48 hours. I know its a big ask, but keep it up and pray that the twitching resolves and the heart duct closes and he gets stronger as the week goes on.
Hugs to you all.
H and M
The main thing was that Flynn was jerking and twitching all over the place, his heart rate was through the roof as was his breathing and his Sat's were through the floor. It was totally heartbreaking to watch. (my brilliant friend Bordy timed his visit perfectly as ever and let me blither on and get myself together in time for the next onslaught)
They decided to do all the tests to check he was strong enough to start the heart medication. He has a PDA, basically a duct that is meant to close before birth hadn't (very common in premmies) and was definitely becoming more of a problem for him. They needed to check his clotting abilities because of him having the brain bleed they wanted to check that it wasn't an inherent fault before they started him on medication where one of the main side effects is bleeding! All came back good so he was all set to start the course Sunday all being well.
In the mean time they'd done another brain scan and found his ventricle to be larger and so they decided to do a lumbar puncure to drain some fluid out. However, it went all a bit wrong and they only got blood. They assured me it was "fresh" and not from his brain and that they would try again Sunday.
At this point they stopped his feeds to try to rest all of his organs and see if he'd calm down. He didn't.
Sunday morning came and i got to the hospital (poor Matt had to stay home again with the big kids and just be there for them. He has been fantastic and has given me some of the strength back that i gave him back in March!!
) to find them lumbar punching him again. I panicked and legged it out of there and ended up in the chapel and began something i have never done in my life, praying. I prayed my heart out......They succeeded and got 8mls of spinal fluid out and sent it off for tests. They began his heart meds and i just watched and waited. He seemed to have periods of calm and periods of manicness, my heart was in my mouth.
Last night (Sunday) I was told by Clara (the positive consultant) that Flynn's spinal fluid (CSF) had come back with a high white cell count and that they feared that he had an infection. Yep. You guessed it! Meningitis. The next 48 hours he is classed as critical because if the infection takes hold his brain is going to take yet another hammering. She said i needed to stay positive but needed to be aware that things were at there lowest. She also asked me if she could call me in the night if there was a change for the worse. I was also warned that he could be intubated, ventilated and sedated upon our return this morning if his condition got any worse. He was also attached to a brain monitor to see if the spasms were in fact seizures and to determine the best form of treatment to give him. They started him on two extremely strong intravenous anti biotic and earlier in the day had begun the medication to close the duct in his heart. They decided to keep that going as its a six day course. The little man had an awful lot to fight.
We arrived this morning ready to face the worse. He was not ventilated but he was still fidgeting, though not as violently and eventually began to look fairly settled.
No Dr's came to grab us which I took as a good sign and we hoped for the best. However i was worried when they said no lumbar was to be repeated today. Obviously i was thinking Why? Is it a lost cause?
Anyway we went for a drink while the nurse did his cares and when we came back a Dr made his way over. He said he had news at which point my heart sank. He said that the culture that was sent away from the CSF 24 hours ago, the one with the high white cell count that indicated serious infection was, to this point, totally clear!! Also they had decided to hold off for the lumbar because he was beginning to settle and the ventricle size in this mornings brain scan was reduced!!! All of his blood tests were also clear of infection markers and he was much happier with his condition at this moment in time! I struggled to stop myself blubbing all over him.
He did tell me that although this is excellent news we still have a way to go. They will keep the brain monitor on for a bit just to observe. They will keep the CSF culture for another 24 hours and they will do a further brain scan in a couple of days. He says hes still not sure about the twitching but thinks its due to brain irritation from the swelling of the ventricle, the breaking down of the blood clot and the subsequent build up of CSF (hydrocephalus) It was Flynn's way of dealing with it and telling us that we needed to help him out pretty soon. His next brain scan wasn't due till Monday (today Infact) There were, during all of this, no further bleeds. We obviously are still in the dark to the outcome of all of this and what it means, but for today we are just pleased its over and relieved he seems more settled and that we live to fight another day.
Thank you all for of your prayers and positivity which i feel have got us through the last 48 hours. I know its a big ask, but keep it up and pray that the twitching resolves and the heart duct closes and he gets stronger as the week goes on.
Hugs to you all.
H and M
Nov 20th 2006, 11:58 am
#2
BE Enthusiast
Joined: Aug 2002
Location: Port Kennedy WA
Posts: 556
Re: Flynns update, its a rollercoaster!
Originally Posted by hevs
Flynn's latest escapade started on Friday when there was a marked difference in his Sat's (oxygen in his blood) and by the amount of "braddys" (major drops in heart rate) he was having. I went home very uneasy and sure enough on my arrival back to the hospital on Saturday morning all hell was breaking loose.
The main thing was that Flynn was jerking and twitching all over the place, his heart rate was through the roof as was his breathing and his Sat's were through the floor. It was totally heartbreaking to watch. (my brilliant friend Bordy timed his visit perfectly as ever and let me blither on and get myself together in time for the next onslaught)
They decided to do all the tests to check he was strong enough to start the heart medication. He has a PDA, basically a duct that is meant to close before birth hadn't (very common in premmies) and was definitely becoming more of a problem for him. They needed to check his clotting abilities because of him having the brain bleed they wanted to check that it wasn't an inherent fault before they started him on medication where one of the main side effects is bleeding! All came back good so he was all set to start the course Sunday all being well.
In the mean time they'd done another brain scan and found his ventricle to be larger and so they decided to do a lumbar puncure to drain some fluid out. However, it went all a bit wrong and they only got blood. They assured me it was "fresh" and not from his brain and that they would try again Sunday.
At this point they stopped his feeds to try to rest all of his organs and see if he'd calm down. He didn't.
Sunday morning came and i got to the hospital (poor Matt had to stay home again with the big kids and just be there for them. He has been fantastic and has given me some of the strength back that i gave him back in March!!) to find them lumbar punching him again. I panicked and legged it out of there and ended up in the chapel and began something i have never done in my life, praying. I prayed my heart out......
They succeeded and got 8mls of spinal fluid out and sent it off for tests. They began his heart meds and i just watched and waited. He seemed to have periods of calm and periods of manicness, my heart was in my mouth.
Last night (Sunday) I was told by Clara (the positive consultant) that Flynn's spinal fluid (CSF) had come back with a high white cell count and that they feared that he had an infection. Yep. You guessed it! Meningitis. The next 48 hours he is classed as critical because if the infection takes hold his brain is going to take yet another hammering. She said i needed to stay positive but needed to be aware that things were at there lowest. She also asked me if she could call me in the night if there was a change for the worse. I was also warned that he could be intubated, ventilated and sedated upon our return this morning if his condition got any worse. He was also attached to a brain monitor to see if the spasms were in fact seizures and to determine the best form of treatment to give him. They started him on two extremely strong intravenous anti biotic and earlier in the day had begun the medication to close the duct in his heart. They decided to keep that going as its a six day course. The little man had an awful lot to fight.
We arrived this morning ready to face the worse. He was not ventilated but he was still fidgeting, though not as violently and eventually began to look fairly settled.
No Dr's came to grab us which I took as a good sign and we hoped for the best. However i was worried when they said no lumbar was to be repeated today. Obviously i was thinking Why? Is it a lost cause?
Anyway we went for a drink while the nurse did his cares and when we came back a Dr made his way over. He said he had news at which point my heart sank. He said that the culture that was sent away from the CSF 24 hours ago, the one with the high white cell count that indicated serious infection was, to this point, totally clear!! Also they had decided to hold off for the lumbar because he was beginning to settle and the ventricle size in this mornings brain scan was reduced!!! All of his blood tests were also clear of infection markers and he was much happier with his condition at this moment in time! I struggled to stop myself blubbing all over him.
He did tell me that although this is excellent news we still have a way to go. They will keep the brain monitor on for a bit just to observe. They will keep the CSF culture for another 24 hours and they will do a further brain scan in a couple of days. He says hes still not sure about the twitching but thinks its due to brain irritation from the swelling of the ventricle, the breaking down of the blood clot and the subsequent build up of CSF (hydrocephalus) It was Flynn's way of dealing with it and telling us that we needed to help him out pretty soon. His next brain scan wasn't due till Monday (today Infact) There were, during all of this, no further bleeds. We obviously are still in the dark to the outcome of all of this and what it means, but for today we are just pleased its over and relieved he seems more settled and that we live to fight another day.
Thank you all for of your prayers and positivity which i feel have got us through the last 48 hours. I know its a big ask, but keep it up and pray that the twitching resolves and the heart duct closes and he gets stronger as the week goes on.
Hugs to you all.
H and M
The main thing was that Flynn was jerking and twitching all over the place, his heart rate was through the roof as was his breathing and his Sat's were through the floor. It was totally heartbreaking to watch. (my brilliant friend Bordy timed his visit perfectly as ever and let me blither on and get myself together in time for the next onslaught)
They decided to do all the tests to check he was strong enough to start the heart medication. He has a PDA, basically a duct that is meant to close before birth hadn't (very common in premmies) and was definitely becoming more of a problem for him. They needed to check his clotting abilities because of him having the brain bleed they wanted to check that it wasn't an inherent fault before they started him on medication where one of the main side effects is bleeding! All came back good so he was all set to start the course Sunday all being well.
In the mean time they'd done another brain scan and found his ventricle to be larger and so they decided to do a lumbar puncure to drain some fluid out. However, it went all a bit wrong and they only got blood. They assured me it was "fresh" and not from his brain and that they would try again Sunday.
At this point they stopped his feeds to try to rest all of his organs and see if he'd calm down. He didn't.
Sunday morning came and i got to the hospital (poor Matt had to stay home again with the big kids and just be there for them. He has been fantastic and has given me some of the strength back that i gave him back in March!!
) to find them lumbar punching him again. I panicked and legged it out of there and ended up in the chapel and began something i have never done in my life, praying. I prayed my heart out......They succeeded and got 8mls of spinal fluid out and sent it off for tests. They began his heart meds and i just watched and waited. He seemed to have periods of calm and periods of manicness, my heart was in my mouth.
Last night (Sunday) I was told by Clara (the positive consultant) that Flynn's spinal fluid (CSF) had come back with a high white cell count and that they feared that he had an infection. Yep. You guessed it! Meningitis. The next 48 hours he is classed as critical because if the infection takes hold his brain is going to take yet another hammering. She said i needed to stay positive but needed to be aware that things were at there lowest. She also asked me if she could call me in the night if there was a change for the worse. I was also warned that he could be intubated, ventilated and sedated upon our return this morning if his condition got any worse. He was also attached to a brain monitor to see if the spasms were in fact seizures and to determine the best form of treatment to give him. They started him on two extremely strong intravenous anti biotic and earlier in the day had begun the medication to close the duct in his heart. They decided to keep that going as its a six day course. The little man had an awful lot to fight.
We arrived this morning ready to face the worse. He was not ventilated but he was still fidgeting, though not as violently and eventually began to look fairly settled.
No Dr's came to grab us which I took as a good sign and we hoped for the best. However i was worried when they said no lumbar was to be repeated today. Obviously i was thinking Why? Is it a lost cause?
Anyway we went for a drink while the nurse did his cares and when we came back a Dr made his way over. He said he had news at which point my heart sank. He said that the culture that was sent away from the CSF 24 hours ago, the one with the high white cell count that indicated serious infection was, to this point, totally clear!! Also they had decided to hold off for the lumbar because he was beginning to settle and the ventricle size in this mornings brain scan was reduced!!! All of his blood tests were also clear of infection markers and he was much happier with his condition at this moment in time! I struggled to stop myself blubbing all over him.
He did tell me that although this is excellent news we still have a way to go. They will keep the brain monitor on for a bit just to observe. They will keep the CSF culture for another 24 hours and they will do a further brain scan in a couple of days. He says hes still not sure about the twitching but thinks its due to brain irritation from the swelling of the ventricle, the breaking down of the blood clot and the subsequent build up of CSF (hydrocephalus) It was Flynn's way of dealing with it and telling us that we needed to help him out pretty soon. His next brain scan wasn't due till Monday (today Infact) There were, during all of this, no further bleeds. We obviously are still in the dark to the outcome of all of this and what it means, but for today we are just pleased its over and relieved he seems more settled and that we live to fight another day.
Thank you all for of your prayers and positivity which i feel have got us through the last 48 hours. I know its a big ask, but keep it up and pray that the twitching resolves and the heart duct closes and he gets stronger as the week goes on.
Hugs to you all.
H and M
Hi
I can't believe what an awful time you are having right now, my thoughts and prayers are with you,
Be strong
Yve x
Nov 20th 2006, 12:09 pm
#3
Forum Regular
Joined: Oct 2006
Location: OZ soon :)
Posts: 179
Re: Flynns update, its a rollercoaster!
Hi Hevs,
my heart goes out to you and your family, and the wee man is obviously a fighter! sounds like he's been though more in his life so far than I have endured over the 29 years of mine. I hope everything works out for the best, I'm sure it will.
My thoughts and prayers are with you
Dave
my heart goes out to you and your family, and the wee man is obviously a fighter! sounds like he's been though more in his life so far than I have endured over the 29 years of mine. I hope everything works out for the best, I'm sure it will.
My thoughts and prayers are with you
Dave
Nov 20th 2006, 12:14 pm
#4
Home and Happy
Joined: Dec 2002
Location: Keep true friends and puppets close, trust no-one else...
Posts: 93,814
Re: Flynns update, its a rollercoaster!
Praying for you and the family as ever Hevs; stay strong my love 
Nov 20th 2006, 12:19 pm
#5
Account Closed
Joined: Aug 2004
Posts: 29,154
Re: Flynns update, its a rollercoaster!
My thoughts and prayers are with you all - you are all amazing to have gone through what you have and stay so strong.
Nov 20th 2006, 12:23 pm
#6
sneaking a peek ...
Joined: Oct 2005
Location: Adelaide, SA
Posts: 3,320
Re: Flynns update, its a rollercoaster!
Originally Posted by hevs
I know its a big ask, but keep it up and pray that the twitching resolves and the heart duct closes and he gets stronger as the week goes on.
Adele, Graham and kids
x
Nov 20th 2006, 12:24 pm
#7
Joined: Jul 2004
Posts: 12,063
Re: Flynns update, its a rollercoaster!
He's definitely a little fighter Hevs
Nov 20th 2006, 12:26 pm
#8
High in the Dandenongs
Thread Starter
Joined: Apr 2003
Location: Listening to Puffing Billy
Posts: 9,183
Re: Flynns update, its a rollercoaster!
Thanks evryone. I'm off to bed for a few hours before i need to be up once more and face the day 
:scared: Whatever it may bring. xxx
:scared: Whatever it may bring. xxx
Nov 20th 2006, 12:27 pm
#9
BE Forum Addict
Joined: Jun 2003
Location: Mandurah WA
Posts: 1,395
Re: Flynns update, its a rollercoaster!
Hevs - Thanks for taking this time to keep us all posted on Flynns progress.
We are all praying and thinking of you during yet another difficult time for you.
Whisky
We are all praying and thinking of you during yet another difficult time for you.
Whisky
Nov 20th 2006, 12:38 pm
#10
Where I want to be
Joined: Jan 2005
Location: In my own head
Posts: 3,220
Re: Flynns update, its a rollercoaster!
They say that life only throws at us what we can deal with.
You must be one hell of a person, and I really admire how you are coping with all this stuff you have had thrown at you over the last year.
My thoughts and prayers and are with you and your family.
Shirley x
You must be one hell of a person, and I really admire how you are coping with all this stuff you have had thrown at you over the last year.
My thoughts and prayers and are with you and your family.
Shirley x
Nov 20th 2006, 12:54 pm
#11
happy to be here!
Joined: Aug 2003
Location: Ellenbrook, WA
Posts: 2,732
Re: Flynns update, its a rollercoaster!
I'll say a prayer for you and yours tonight - God Bless you all.
Tracey
Tracey
Nov 20th 2006, 1:07 pm
#12
Joined: Sep 2005
Location: Mount Tamborine
Posts: 17,426
Re: Flynns update, its a rollercoaster!
Oh gosh, he's a fighter isn't he bless him.
Will keep those positive vibes going
Will keep those positive vibes going
Nov 20th 2006, 1:09 pm
#13
......in the sand !
Joined: Nov 2004
Location: Perth, WA :)
Posts: 4,421
Re: Flynns update, its a rollercoaster!
All my prayers and thoughts are with you, your family and baby Flynn.
Gillian x
Gillian x
Nov 20th 2006, 1:18 pm
#14
aka bunja
Joined: May 2005
Location: Butler, WA
Posts: 1,697
Re: Flynns update, its a rollercoaster!
Hi Hevs,
Just wanted to add that my thoughts are with you at this time. Sounds as though Flynn is quite some fighter.
Janine
Just wanted to add that my thoughts are with you at this time. Sounds as though Flynn is quite some fighter.
Janine
Nov 20th 2006, 1:28 pm
#15
Account Closed
Joined: Nov 2003
Posts: 3,533
Re: Flynns update, its a rollercoaster!
I'll join everyone here in sending you all my prayers, thoughts and best wishes.
Stay strong x
Stay strong x