Advice please for sister

[Lil-woowoo]

Hi everyone. My nephew Kai was born at 24 weeks gestation weighing 1lb 7oz at RIE. Things where very traumatic for him, he arrested 3 times in 2 days and it was found there was a problem with a valve in his heart and he needed surgery ASAP. At 6 weeks weighing just over 2 lbs, kai was transferred over to Yorkhill childrens hospital for surgery, which was successful and afterwards his condition started to improve. After 17 weeks in NICU he came home and continued to do well. He was also diagnosed with a grade 3 IVH on both side, but at that point dr refused to do anything, just monitor it incase it got worse. Now after 3 months of my sis pestering for a scan, she got 1 which showed it had worsened to a grade 4 and now saying theres nothing they can do. His head was being measured regularly and it was growling at a fast rate to which even the GP noted that his head was bit big for his age and that he couldnt hold the weight of his head. Sorry for rambling on, was just wondering if any1 out there was in a similar place or had surgery. Thank you x

 

[AP]

Alex has a left hand side grade 4 bleed, and was born at RIE too. They normally resolve in terms of like a scab, leaving a scar, which is the cause of any issues developmentally (if any) in the future.

My concern is that his head circumference is getting bigger, and the can be a possibility that the bleed is preventing fluid run in the head. Think in terms of plumbing....
This can a)resolve itself, like it did with my Alex or b)increase, like it did with alexs little friend, and they needed to drain the fluid out via a shunt.

Kai should still be under the care of neonatal until he is two, I would recommend she call neonatal (is it RIE for the follow up care?) and really ask for a second opinion, GP's dont have a scooby when it comes to preemies.

I will say though, Alexs head is on the bigger side too, bigger than average anyway, but nothing to worry about.

 

[Lil-woowoo]

Thank you very much for the reply. My sister lives is Falkirk so they are under the care of stirling royal infirmary. He was born in RIE because when my sister was in labour they didnt have the resources or room to care for Kai, so she was given a police escort through and he was born within an hour of arrival at RIE. Think the problem is that SRI is a very small unit, and cant deal with the problem. My sister has been begging them to refer him to a neurologist for second opinon, which she is getting thankfully at Southern General in Glasgow. The Paedatrician at SRI told my sis there was no point fitting a shunt and wouldnt even discuss the option of a resevior. Just hoping she gets some answers at the southern. Hope you dont mind me asking but, has Alex had any problems with her eyes? My sis is worried about Kai's as he doesnt seem to focus when shes speaking to him nd they flicker quickly x x

 

[AP]

Alex did have issues with her eyes, she had eye tests during and after her neonatal stay. The oxygen can affect their eyes, causing ROP

https://en.wikipedia.org/wiki/Retinopathy_of_prematurity

Anyway she ended up getting laser eye surgery at about 6 weeks after leaving neonatal,which corrects that. ROP needs to be picked up quickly.

How old is Kai now? I can imagine that the world will be a crazy place for him just now, and it took Alex about 3 months at home to finally communicate - like smile and properly follow us with her eyes.

But as a 24 weeker he could just be a lil slower, and thats fine, its acceptable! You have to give some extra time!

I hope the southern general can help better, but I would always say your sis should stamp her feet until she gets what she wants. Phone people, send letters, everything. If one person says no and your sis is not convinced, get a second opinion. Sod it! Its her baby, she knows best!

Ask me anything hun, im happy to help!

 

[Laura2919]

I dont have any experience but I want to wish you all the best hun. Sorry x

 

[bumpsmum]

wishing your family lots of luck and support. Hope little Kai gets the treatment he deserves now xx

 

[Lil-woowoo]

Thank you all for the lovely messages. Sb22 kai will be 27 weeks on sunday and weighing just over 10lbs. He was born on 13th september 2009 and wasnt due til 1st of January so was such a shock as the doctors kept telling my sis to prepare for the worst and we wherent sure he was going to make it. My sis did ask the paedatrician about lazer surgery on his eyes but they said they would be fine, which is a bit confusing as when he was born his eyes where fused shut and didnt open til nearly 3 weeks, so would have thought there would been a good chance he would have needed it. My sis is rather feisty lol and keeps on at them. Just hoping its not long til appointment from Southern General comes through to get some answers. Will defo keep yous updated x

 

[nursejackson]

What a miracle baby! That is a great story and I will be praying for that little one.

I don't have any experience either but wanted u to know that I'm thinking of that little one!

 

[AP]

Lil-woowoo Alexs eyes didnt open for a week. I know other babies that eyes didnt open for a while either but they didnt need the laser surgery - in fact we were the only ones at the time that needed it! He's a flaming good weight too.

 

[Foogirl]

I'm in Falkirk and Abby was at SRI too. I'm surprised there is a concern about the level of care there as we found it to be excellent. Like all others though - they are sometimes busier than others!

It does sound like she is doing the right thing by pestering them though. I'd agree with others here - GPs are shit with preemies!

I'm going to be running a Bliss support group at SRI next month if she is interested - or if she wants just to meet up and have a chat, I'm up for that too. PM me if you like.

 

[Lil-woowoo]

Yeah hes a good weight, hes becoming a wee porker now, must say hes doing well.

Thanks Foogirl i will say to my sis about that. I dont think she has anything personal against SRI, obviously shes been comparing it to RIE and Yorkhill which granted are much bigger and more specialist hospitals. I have spent most of my nearly lol 3 years training there and have seen plenty good and bad, but just like any hospital. I think i will be good to see how things are in the new hospital, bigger and better equipment etc My training comes to an end in fours months time and i have actually considered applying for jobs on neonatal though it would have to be glasgow or edinburgh as SRI dont take on adult trained nurses in their unit x x

 

[Foogirl]

Yeah hes a good weight, hes becoming a wee porker now, must say hes doing well.

Thanks Foogirl i will say to my sis about that. I dont think she has anything personal against SRI, obviously shes been comparing it to RIE and Yorkhill which granted are much bigger and more specialist hospitals. I have spent most of my nearly lol 3 years training there and have seen plenty good and bad, but just like any hospital. I think i will be good to see how things are in the new hospital, bigger and better equipment etc My training comes to an end in fours months time and i have actually considered applying for jobs on neonatal though it would have to be glasgow or edinburgh as SRI dont take on adult trained nurses in their unit x x

Yes hopefully the new hospital at Larbert will show some improvement to the unit as there are certainly facilities that are missing. The staff are brilliant though.

I'm laughing the thought of them not taking "on adult trained nurses." I have a mental picture of a load of children trained as NNICU nurses working there! I'm sure that's not what you meant though!