Does this mean surgery? (urgent)

[5oliveplants]

Hello! This is my first time posting. I have a 7 month old son with SB and Hydrocephaly. I have an urgent question! My little guy has been doing great and we have been so pleased with his health. However, on Thursday at a routine pediatrician appointment it was discovered that Jordan's head had grown too much in the past couple weeks. It measured 47.5 cm. The dr immediately called the neurosurgeon who said it is okay to wait to bring him in till Monday. I have not noticed any symptoms but the ped said it is because his skull has not fused yet and the excess fluid simply pushes the bones out so it is not putting pressure on the brain. I do notice since then that his fontanel is very firm.

Can someone give me some hints as to what might happen Monday? Should I go prepared to stay and for surgery or are there other things they can try first? Any help is greatly appreciated

[smoop]

My daughter was shunted at 3 months of age. They closely monitored her hydro for those first 3 months and it gradually increased. Finally they realized that the shunt was necessary and they scheduled us for surgery the following week. I would suggest going in on Monday prepared for the possibility of surgery... not to scare you. They will either do a CT or MRI... our first neuro preferred MRIs and they always put Analise under for that.

[5oliveplants]

oops! I should have mentioned that he does have a shunt! It was put in at two days old.

[Dodger67]

Yes it needs to be replaced.
Shunt revision is a fairly simple operation.
He will probably be in hospital for 2 to 3 days.

[leigh828]

I can't tell from your post if your son already has a shunt or not, but I would say to be prepared for surgery when you go in on Monday. :( I know, not what you wanted to hear. My son had his shunt placed at 3 weeks and we were only there overnight and haven't had any problems since (he is now almost 15 months). Hang in there mama, I know this isn't what you want, but it will help your little guy.

[leigh828]

So sorry, I just saw your second post that he does have a shunt. Sounds to me like he may need a revision. Is his shunt programmable? If it is, maybe they can just try a different setting wich would be quick and easy. Good luck to you and keep us posted!

[Ziggy]

that was Sweet pea's only symptom when he needed a revision at 3 mo old.

[Summer25]

Ok, from a personal experience, do not wait until monday. Take him to the ER today!!! I had a shunt malfunction where I was having some symptoms and it was a friday. The doctor told me to go home until monday and he would do surgery then. Friday I went home, took a nap, woke up, and immediately after waking up had a seizure. Was rushed back to the ER after calling 911. Doctor still wanted to wait until saturday to do the surgery. I ended up having at least 3 more seizures that night. I also knew a little girl that waited to have a shunt revision because she had way too many that she just didn't want to have anymore, so she waited to tell her parents that she was in pain. It didn't end well at all for her. So, I say go now!

[leigh828]

I agree that you don't want to wait long, but I also think that it is totally different for an infant whose skull hasn't fused, then it is for a adult...or even a child.

[ainemc]

I would say it looks like a shunt revision is needed. Hopefully if the shunt is just blocked they won't need to remove all the tubing but only a part of it, so if it is blocked at the top they will only need to open the incision to the head rather than the tummy as well or vice versa.
My daughter has needed two shunt revisions, and both times she has been in hospital for 3 days.
I'm just realising it is Monday so your problem at the hospital, good luck and let us know how it went :)

[5oliveplants]

Yes, we did find out on Monday that Jordan's shunt was not functioning. He had surgery this morning and is doing well. We are hoping to go home tomorrow. Thankfully, they did not need to open his tummy so he only has one incision. I'm sad about all the hair they had to shave off, though!

thanks for all your help!

Rachel

[Lifeisgood]

I am so sorry to hear that Jordan needed surgery but hope that he is quickly on the road to recovery! I bet you can't wait to have him home and healing. Take care of yourself too! :)

[Ziggy]

I'm glad they were able to take care of it quickly! And yeah, it seems like every time Micah's hair is all the same length, he has to have surgery and they shave a spot again! It's really only been 3x though. Just seems like more.

[ainemc]

I know how you feel, it makes me sad when i see the big bald patch on my daughter's head but it will grow back and the most important thing is he is ok, i'm glad to hear his surgery went well :-)

[Dodger67]

Good to know the problem is fixed and all is well - except the hairstyle :dance2: