Father of twins
 

On Oct. 24,2009 my twin sons was born. They were 10wks 5days early. Thomas had a brain bleed. Level 3 on right, and level 4 on left. By Dec 23, the right side had resolved itself completly. The left side partially resolved. His right ventrical appeared to be enlarged. After a MRI, the ventrical was normal. There was however brain deterioration.
Thomas' only evidence of hydracephalus is a) the size of his noggin b) little mobility of right arm. Now due to the pediatrician's office failure to decide which of the insurances to accept Thomas has ben refered to a neurosurgeon. Surgery is going to happen. Don't know when. The first appointment is tomorrow. My question in what am I to expect to hear, see, and do? The enternet talks about all possabilities. The pictures are sevear. Is there anyone out there that is "normal"? I know it's a long time away, but what happens to Thomas when my wife and I are gone.:confused:

relieved
 

Today we had an appointment with our neurosurgeon. Dr Ruble of Atlanta. It was confirmed he diagnosed my son's ultra sound and MRI. He was straight forward, with tact. My son will have a vp shunt implanted. Looks like July 9th. The doc gave us an educated guess that Thomas will improve on his developmental skills. But warned us that the shunt brand he uses has a 50% failure rate in the first 2 years. We had a CT scan done during the appointment. Nothing new was found. Oddly enough I received a copy and looked at it when we got home. It was interesting. I was able to see what was the problem. The nurse said to keep this with him for emergency. And to keep any updated scan handy. So I thought I would pass that info on.

I was sad to read of the troubles that little Thomas has had to endure, but pleased that that his outlook is optimistic.

I know very little about hydrocephalus, except for what I learned while caring for children with the condition during my nursing training (a very long time ago). Just the same, I wanted to reply and let you know that some-one is thinking of you and your family.

I look forward to reading better news in your next post.

Today is Wednesday. The day after tomorrow is Thomas' opperation. The feeling is very omminus. We know it is needed. Dr Wruble is very respected in Atlanta. It's the waiting and counting down that is getting very nerving for my wife and I. I'll post the results Monday. Give him time to recover and respond.:winky:

Thank you for the update.

I'll say a prayer for little Thomas ::smileypray:

surgery
 

We are home! Thomas is doing great. Dr Wruble told us the surgery would last an hour and a half. The nurse called and said Thomas was under and the doc was starting. Not even 45min in the doc asked us to the consult room. Thomas did good the surgery was a success. SURPRISED THE SNOT OUT OF ME!!!!!!!!! So after a night of observation we came home. Thomas is a different baby already. It'll take a couple of months for his body to catch up to his head. We are seeing personality differences now. It will take a couple of weeks for abilities to improve. Thank everyone for the prayers:grouphug:

:yahoo: Excellent news! :yahoo:

Thanks for letting us know. :D

update
 

It was a week since Thomas came home. Thanks to Dylan(twin brother) a few questions came up. Dylan is learning to sit up. What sits up can fall. Dylan fell backwards and hit his head. Thomas' shunt is place 2-3 inches behind his left ear. Question #1 When Thomas is learning to sit up, is there a chance that the shunt will be damaged from the impact. Question(s) #2/3 When Thomas falls back on the shunt, can it rupture the skin? / crack his skull? No we wasn't told to get or were we given a helmet. We have a follow visit with Dr. Wruble on July 29th. Until then, does anyone have the answers to these questions?
Friday the 16th, Thomas had Physical Therapy. Daniel the PT said there was a great deal of improvement in just his cognitive and reflexive. Daniel said that this was a huge push in the right direction. Some physical improvements has been noticed. The opening and grasping with his right arm and hand. Before there was little activity. I pray that this continues to improve and accelerate.
If you have been in my shoes, and you recall anything that came up. Please let me know what happened and best way to deal with it, so I'm prepared.:wink:

update
 

Tonite Thomas has discovered his right hand. The shunt was definitely the right course. Dr. Wruble is the man. God is awesome. There is still a ways to go before he is caught up, but I'm excited about it all. Little steps is still improvements. I know there are people who have read this and prayed for my son. Thank all of you.:D

update
 

We had the follow up appointment with Dr. Wruble. Doc says that Thomas has improved, and the incisions looked great. He informed us that in 6 months we are to get a C.A.T. scan and another follow up appointment. The physical therapist (Babies Can't Wait, Atlanta, GA) is doing a great job. Thomas is on the right path. Thank you to everyone that reads this and said a prayer.:)