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Re: Flynns update, its a rollercoaster!
PAH!
yesterday was Bit of an uppy downy day. Was told i could hold him today after he'd had his antibiotics, but then the IV line wouldn't flush. The Dr decided to change it but after he'd been to a half hour lecture. Then Flynn had a huge B2 (where his heart rate drops very low and he doesn't pick up) and A1 (where he forgets to breathe) all at once. They shook him and i was like HELLO!!!!!! nothing! So the pinched his foot and he eventually sprang back to life. Very common and they grow out of it apparently, but it nearly gave me a heart attack! Then the Dr came back and tried several sites for the new IV but eventually had to go in his other foot (the right one has a large central line in it for nutrients) then be wrapped in a big splint. Then the vampire came round for 21 day foetal screening (or something) tried stabbing his hands, no luck so began ripping off the tape and splint on his newly placed IV line and stabbed his heel to pieces. then the splint had to be all renewed and stuck back on again. He was so distressed after all of this i was then told, sorry no cuddle today. I fought back the tears very hard. It was his three week birthday and all i wanted was to give him a big cuddle and tell him how proud of him i am of him. Sorry, but I am feeling hacked off . As the Aussies say, I'm over it Just called and hes had a good night but did have some desats (thats how this all kicked off last friday!!) and they were doing his ultra sound when i called. The decision to lumbar him is being made this afternoon. Half of me just wants them to do it so he doesn't go down hill rapidly like he did last weekend. The other half of me is praying for the vetricle to be smaller and they leave him alone (in my heart i just know its gonna be bigger) Keep the prayers and vibes coming guys, he still needs all of us pulling for him. :) Thanks, us allxxxx |
Re: Flynns update, its a rollercoaster!
Oh crap hevs... I remember having to hold my 3 week old son still so they could lumbar him... It was so terrible, I can't imagine how you're doing with it all so frequently and I'm not surprised he's having a tough time... His irritation from all the needles must be huge.
I really hope you get to hold him soon... sounds like he really needs some skin to skin contact and actual human warmth to help him through this. Hang in there hevs. We're praying for you all. |
Re: Flynns update, its a rollercoaster!
(((Hugs)))
Lots more positive thoughts to Flynn. And to all of you, H. I hope you're able to get that hug soon - you both deserve it. |
Re: Flynns update, its a rollercoaster!
Breaking my heart for you all and wee Flynn. I've told my little girl about Flynn and shown her his picture, and she wanted me to tell you that she will pray for him too.
Nic |
Re: Flynns update, its a rollercoaster!
TELL the consultant you both need a cuddle, bonding is as important as any treatment, It will also calm Flynn down and his sats and heart rate may improve.
Good luck Di |
Re: Flynns update, its a rollercoaster!
Originally Posted by hevs
PAH!
yesterday was Bit of an uppy downy day. Was told i could hold him today after he'd had his antibiotics, but then the IV line wouldn't flush. The Dr decided to change it but after he'd been to a half hour lecture. Then Flynn had a huge B2 (where his heart rate drops very low and he doesn't pick up) and A1 (where he forgets to breathe) all at once. They shook him and i was like HELLO!!!!!! nothing! So the pinched his foot and he eventually sprang back to life. Very common and they grow out of it apparently, but it nearly gave me a heart attack! Then the Dr came back and tried several sites for the new IV but eventually had to go in his other foot (the right one has a large central line in it for nutrients) then be wrapped in a big splint. Then the vampire came round for 21 day foetal screening (or something) tried stabbing his hands, no luck so began ripping off the tape and splint on his newly placed IV line and stabbed his heel to pieces. then the splint had to be all renewed and stuck back on again. He was so distressed after all of this i was then told, sorry no cuddle today. I fought back the tears very hard. It was his three week birthday and all i wanted was to give him a big cuddle and tell him how proud of him i am of him. Sorry, but I am feeling hacked off . As the Aussies say, I'm over it Just called and hes had a good night but did have some desats (thats how this all kicked off last friday!!) and they were doing his ultra sound when i called. The decision to lumbar him is being made this afternoon. Half of me just wants them to do it so he doesn't go down hill rapidly like he did last weekend. The other half of me is praying for the vetricle to be smaller and they leave him alone (in my heart i just know its gonna be bigger) Keep the prayers and vibes coming guys, he still needs all of us pulling for him. :) Thanks, us allxxxx thinking about you hugsxxxx |
Re: Flynns update, its a rollercoaster!
Originally Posted by hevs
PAH!
yesterday was Bit of an uppy downy day. Was told i could hold him today after he'd had his antibiotics, but then the IV line wouldn't flush. The Dr decided to change it but after he'd been to a half hour lecture. Then Flynn had a huge B2 (where his heart rate drops very low and he doesn't pick up) and A1 (where he forgets to breathe) all at once. They shook him and i was like HELLO!!!!!! nothing! So the pinched his foot and he eventually sprang back to life. Very common and they grow out of it apparently, but it nearly gave me a heart attack! Then the Dr came back and tried several sites for the new IV but eventually had to go in his other foot (the right one has a large central line in it for nutrients) then be wrapped in a big splint. Then the vampire came round for 21 day foetal screening (or something) tried stabbing his hands, no luck so began ripping off the tape and splint on his newly placed IV line and stabbed his heel to pieces. then the splint had to be all renewed and stuck back on again. He was so distressed after all of this i was then told, sorry no cuddle today. I fought back the tears very hard. It was his three week birthday and all i wanted was to give him a big cuddle and tell him how proud of him i am of him. Sorry, but I am feeling hacked off . As the Aussies say, I'm over it Just called and hes had a good night but did have some desats (thats how this all kicked off last friday!!) and they were doing his ultra sound when i called. The decision to lumbar him is being made this afternoon. Half of me just wants them to do it so he doesn't go down hill rapidly like he did last weekend. The other half of me is praying for the vetricle to be smaller and they leave him alone (in my heart i just know its gonna be bigger) Keep the prayers and vibes coming guys, he still needs all of us pulling for him. :) Thanks, us allxxxx Sending you a PM re a few hospital services you may not be aware of to help families in this type of situation. |
Re: Flynns update, its a rollercoaster!
Originally Posted by harveyhare
TELL the consultant you both need a cuddle, bonding is as important as any treatment, It will also calm Flynn down and his sats and heart rate may improve.
Good luck Di Yes, get the consultant to give you a cuddle, hevs. Tell him it's important. :cool: |
Re: Flynns update, its a rollercoaster!
Originally Posted by hevs
PAH!
yesterday was Bit of an uppy downy day. Was told i could hold him today after he'd had his antibiotics, but then the IV line wouldn't flush. The Dr decided to change it but after he'd been to a half hour lecture. Then Flynn had a huge B2 (where his heart rate drops very low and he doesn't pick up) and A1 (where he forgets to breathe) all at once. They shook him and i was like HELLO!!!!!! nothing! So the pinched his foot and he eventually sprang back to life. Very common and they grow out of it apparently, but it nearly gave me a heart attack! Then the Dr came back and tried several sites for the new IV but eventually had to go in his other foot (the right one has a large central line in it for nutrients) then be wrapped in a big splint. Then the vampire came round for 21 day foetal screening (or something) tried stabbing his hands, no luck so began ripping off the tape and splint on his newly placed IV line and stabbed his heel to pieces. then the splint had to be all renewed and stuck back on again. He was so distressed after all of this i was then told, sorry no cuddle today. I fought back the tears very hard. It was his three week birthday and all i wanted was to give him a big cuddle and tell him how proud of him i am of him. Sorry, but I am feeling hacked off . As the Aussies say, I'm over it Just called and hes had a good night but did have some desats (thats how this all kicked off last friday!!) and they were doing his ultra sound when i called. The decision to lumbar him is being made this afternoon. Half of me just wants them to do it so he doesn't go down hill rapidly like he did last weekend. The other half of me is praying for the vetricle to be smaller and they leave him alone (in my heart i just know its gonna be bigger) Keep the prayers and vibes coming guys, he still needs all of us pulling for him. :) Thanks, us allxxxx more prayers & good vibes for you all, hope you get a cuddle soon. take care xxx |
Re: Flynns update, its a rollercoaster!
Hevs I read this and I just haven't a clue what to say. He sounds like a fighter which is what will get him through this. All of our positive thoughts and prayers are still heading your way, thanks for taking the time to let us know how it is all going (at least you are getting an early view of how he will be as a teenager with all of the stroppiness and refusing to do things by the book ;) ).
Keep strong. Nicky xx |
Re: Flynns update, its a rollercoaster!
I'm still praying for you guys, my heart just sinks when I read your stories, I have no idea how you do it. I hope you get to give him that big cuddle very soon xxxxx
Els |
Re: Flynns update, its a rollercoaster!
Prayers winging your way.... how incredibly strong you all have had to be.
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Re: Flynns update, its a rollercoaster!
My thoughts are prayers are with you all,
hang in there guys. Sarah x |
Re: Flynns update, its a rollercoaster!
Hang in there, Hevs. I know it's a rough trot at the moment, but things can - and will! - get better. :)
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Re: Flynns update, its a rollercoaster!
(((((((++++++++++++++++vibes++++++++++++++++++)))) )))
(((((((((hhhhhhhuuuuuuuuuuggggggssssssssssssssssss sss))))))))))) Hope you get a cuddle soon xx |
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