Niamh update

[Gill15]

Hello! Many thanks for all your emails, prayers and support over the last 2 weeks.. I don't think you can ever know how helpful and reassuring they have been during what has ended up being a very scary time!

Niamh is still very poorly but fingers crossed she is starting to show more positive signs. We were told earlier this week she contracted meningitis as a result of her nappies leaking into her back wound - her lesion comes fairly low down her back. As a result of her infection her CSF has become really thick and gunky and keeps blocking her external drains, we gone through more than 10 sets in 5 days! She is currently on iv antibiotics as well as having them injected straight into her ventricles. She is now at least feeding and enjoying coming for cuddles which is a massive step forward and while the doctors are still being very cautious about her progress I am sure she will show them all what she is made of.

Hopefully my next update will be to tell you all she is home!!! :0)

Lol gill x

[Dodger67]

Good to know things are looking up!

Has anyone at the hospital said anything about a review of how they dressed her wound? It should have been properly "sealed off" from contamination.

[angel]

I was thinking the same thing dodger. If the wound was properly dressed you would think that wouldn't have happened. I could be wrong. I was 6 days old before i had my lesion closed. My mom never saw it because they told her there was a risk of infection and my mom is kind of wierd about germs anyway so she never saw it. I will keep your family in my thoughts.

Angel

[ainemc]

You and your family have been through alot. Sounds like Niamh is on the mend though, so glad to hear that :)
Caitlin's nappies were always leaking into her dressing and they were afraid of it infecting her wound so anytime she got poo on her dressing I was straight onto the nurses to change it lol. I didn't know meningitis could occur with that happening though.

Can't wait to hear the news of when she gets out!

Hugs from me and Caitlin x

[Jill]

Kingsley was the same - his incision goes right down his bum crack. They did have a steri-guaze barrier but it often seeped over. A little bit did get infected at one point, but no where near what it sounds like Niamh is going through! Poor little thing. Can't wait to read the update that she's home!

[LisaJoy]

Continuing to pray for Niamh's recovery.

[Kari]

Good to know things are looking up!

Has anyone at the hospital said anything about a review of how they dressed her wound? It should have been properly "sealed off" from contamination.

That is exactly what happened with Zach. He always shot poo out all over his incision. We had a "mud flap", but it often was covered and it leaked around it.

[Gill15]

Good to know things are looking up!

Has anyone at the hospital said anything about a review of how they dressed her wound? It should have been properly "sealed off" from contamination.

The care of her wound at the hospital has been questionable to say the least. 2 days after her back closure the nuero surgeon removed the plastic surgeons dressing without consulting them, the plastics doctors were not very happy about this as it left the wound exposed. Since she has had her infection we have been told by the high dependency nurses there was no care plan in her notes for her dressing so each nurse has done something different with it, it wasn't changed often enough and it hasn't been covered properly. Even now there is a question as to whether the wound is still leaking slightly but each doctor has a different take on how it should be dealt with. At least the high dependency nurses are very thorough in their care of the wound.

I've certainly been a bit niave about the standard of care Niamh would receive but I've learnt very quickly to challenge and question everything that is happening and make sure my girl is getting the attention she deserves.

Gill x

[Dodger67]

Maybe you should insist on a formal investigation of why they don't have a proper sacral wound dressing protocol.
Such a dressing must obviously always include a proper barrier against fecal contamination.

Even though Niamh won't benefit from it, it would hopefully save other babies from getting infections.

[Gill15]

Yes, I completely agree. If I can help stop another my
going thru this I'll do anything.

[lsanchez]

Yes, please go and investigate, and be the biggest pain in the butt to every nurse! I work in a nursing home (it is different) but we have some people that's family members have ridiculous expectations of us, and these are the residents best taken care of!

[lsanchez]

So, sorry about little Niamh, hope she gets better! Just wondering.. why is her shunt externally, is it until the infection goes away?

[Ziggy]

Yeah, they externalize the shunt when there's an infection.