Originally Posted by hevs

Evening all!



Well today the dreaded brain scan loomed. No furthur bleeds (which i was panicking about after yesterdays freaky four o' clock episode) the ventricle size has gone up by a whopping 0.025 mm!! (yes, i was being sarcastic, they are NOT concerned at this stage) The head circumference is up a bit, but still not concerned.

He started 3ml feeds again hourly, which i said again was too much. When he started throwing up and having B1's and even 2's all over the shop I asked Dr Jerry to come look at the puke and he agreed to put the feeds down to 2ml per hour because Dr Mums diagnosis (actually just a real gut feeling based on my other two) of reflux was right. They will need to build him up to full feeds very slowly and once they do that they can begin to thicken his feeds to try to make them stay down a bit better.

He is staying on the vancomyacin and another antibiotic for 2 more days "just in case" but the culture has been thrown out. It didn't grow anything.

His haemaglobin level is a bit low, but hardly surprising as i think that a pack of vampires would have left more blood in him than the Drs over the last few days! So he may have to have a bit of a transfusion tomorrow.

But all that aside he had a very good day. Very few twitches and lots and lots of sleep, which everyone agree he needs very badly cos since saturday, when all this kicked off, he really hasn't been able to settle.

A couple of the consultants have nick named him Monkey cos he's apparently not only very cute, but very naughty and just refuses to do anything "text book" and just when they think they've worked something out, he goes and does something to astound them! Today he got very cross laying on his front, so they tried him on his back and got more protests. So, somehow(?) he managed to squirm around onto his right side and fell asleep for 3 whole hours!!

So we are battening down the hatches for the next instalment, lets face it its his 3 week birthday tommorrow so hes bound to do something to make us give him the attention he deserves

Thanks so much for all of you support and prayers and words of encouragement, it helps us all so much. xxx

Originally Posted by hevs

Evening all!


So we are battening down the hatches for the next instalment, lets face it its his 3 week birthday tommorrow so hes bound to do something to make us give him the attention he deserves

Thanks so much for all of you support and prayers and words of encouragement, it helps us all so much. xxx

Originally Posted by iPom

Hevs, this is great ... He's really showing his independence and desires by getting stroppy. He's a real fighty dude.

Hang in there you guys.... C'mon Flynn!

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