LO just diagnosed with hydrocephalus @10 months old..what now?

[HappiestMom]

We just had an ultrasound to see if it was just her head shape or growth or fluid and it was fluid pockets. We go back for an MRI next Weds and then go back for the results and setting a surgery date the weds after that.

For anyone else that has had an LO this young go through this? How did they handle it? How long was recovery and how did they do physically after? Im most worried if she has to have a shunt instead of the endoscopic surgery about infection but we dont know what is causing her issue yet so we dont know which surgery will be better for her needs...any advice or support or anything would be nice right now...

 

[HappiestMom]

anyone? BUMP...

 

[Tiff]

No experience with my own daughter but I used to work for a Respite company when I was in my teens and one of my girls had a shunt.

As for the surgery and the recovery again I can't say much but she was a delightful little girl who didn't let the shunt affect her life at all. We did sign language to help her communicate and the only thing I had to watch for was if she bumped her head which could disrupt the shunt).

Massive hugs, that's a hard thing to go through! Always here to listen if you need to vent.

 

[Tegans Mama]

Firstly, what you do now is go on with your life the way you intended My 4 year old has hydro, and she lives a very happy life. Her hydro is *an* issue but it's certainly not the centre of our lives.

Tegan had her first shunt placed at 6 days old. That one failed, and her second was placed at eight weeks. We are aware of her shunt and the risks it imposes (such as blockages, and infection, though the risk of infection does decrease over time) but we don't let it take over our lives.

I remember being very worried when her shunts were placed, but as far as brain surgery goes, a shunt being placed is minimally invasive and really quite quick (roughly 2 hours for a full placement in our case.) Hydro is a very scary condition but as your little one grows older, you'll find that you forget about it at times. You do have quite a hard road to come, I won't lie to you, because there are similarities between almost every illness and a shunt blockage/infection etc.

or anyone else that has had an LO this young go through this? How did they handle it? How long was recovery and how did they do physically after? Im most worried if she has to have a shunt instead of the endoscopic surgery about infection but we dont know what is causing her issue yet so we dont know which surgery will be better for her needs...any advice or support or anything would be nice right now...

As I said, Tegan was 6 days and 7 weeks respectively when her shunts were placed. The surgery itself took two and a half hours the first time and I think maybe three and a half the second, but the second was an emergency placement and not routine. She handled it well, the hardest thing at the time was keeping her nil by mouth because you really can't explain to a newborn why they can't eat. It is just as hard with a slightly older child too though. They don't do third ventriculostomies on children under three in the UK because they tend to heal very quickly and need to be repeated a lot. After her second shunt placement, Tegan was discharged from hospital after 6 days, but routinely shunts are placed as outpatient surgeries in the UK. She was only kept so long because of the complications her first shunt caused.

If you have any questions, please feel free to PM me. I know that what you're going through is hard, but babies are very resilient and she will be fine.

 

[sun]

My good friend's son has hydrocephalus and had a shunt put in when he was an infant. He's never had any problems from it so far and is almost 4. xx

 

[HappiestMom]

https://twitter.com/BrieanansMom

 

[netty]

 

[netty]

Hope B is making a good recovery
I have been thinking about you today after seeing this last night

Praying for you

 

[HappiestMom]

just got back from our Care Team meeting...B will be getting a permanent internal shunt from her head to her belly on Monday...on Wednesday she will be getting a g-tube (feeding directly into her belly)....a trach for breathing into her throat....and then a port for her chemo around her right clavicle....sometime around all this she will also be getting a spinal tap to see if she has any extra cancerous cells floating in other areas as well.... PLEASE pray for our little girl..especially next week...as she will be going through many many procedures for her tiny little body....we know these will all help in the long run but we still ask for your thoughts and prayers as we all go through this....

 

[sun]

Oh my goodness I can't believe all you and your little girl have been through.
Thinking of you and sending lots of hugs xx

 

[netty]

how are yoU all dOINg?

thinking of you

 

[peachymomma]

My daughter was 10 months old as well when she had her VP shunt placed. She did very well, was sent home on only tylenol for pain the next day. (don't know if this is standard or because of her kidney diease. I forget about it most days now, it's just part of who she is. She will be 9 in January and has never had a revision.

 

[HappiestMom]

Update wise from B..she will be getting her chemo port in too today if all goes well...she might be chemically paraluzed for up to 7 days while all her things heal up or she could be awake in a few days..they said you neve know how each baby will react..so like everything else we just have to wait and see... will update as we go along today...keep her in your prayers that the surgeons are able to complete all three surgeries so our little girl doesnt have to go under yet again....

 

[HappiestMom]

https://babyandbump.momtastic.com/baby-club/1195683-brieanan-baby-b-after-her-surgeries.html

 

[Tegans Mama]

Hey hun I'm sorry I've only just seen this thread.

 

[netty]

you have such a strong girlie