my 19month old has just been diagnosed with macrocephaly and hydrocephalis need advice!!?

Question

my 19mth old has just come out of hospital after having a icp test and we found out that he has macrocephaly and hydrocephalis after we have been saying since he was 2weeks old that he has a problem as he was going blue stopping breathing and he couldn't support his head until he was 7 months old. but we knew that he had a very large head so obviously he wouldn't be able to support it on a small neck. he's had two ultra sound scans one at 6wks and one at about 13 months he has also had act scan at 10 weeks which showed the had a lot of excess fluid. the ct scan was supposed to be repeated six months later but he's never had another one. we have been under the cranial facial team and they have been adament that he's had an xray when he hasn't { his back soft spot closed at 3weeks and his front soft spot was being pushed apart it went as far as it could but then he started getting lumps come up all around his skull from the pressure but they kept saying he was fine.

we then saw a neuro surgeon and within five minutes of meeting he said he needed a icp operation to check the pressure and this has found that he has hydrocephalis {he's lost all of his speech and he had 70 words and was making sentences} they have said he needs another ct scan within a month to see if it's cranial facial {the ones whom we've been arguing with about the xray and ct scan} then he will be having some sort of operation to drain the fluid more than likely he will have a shunt but there is other things that they can do now a days. but they didn't explain the different options that they have .

can anyone give me any advise or ideas of what they may do and how long the hospital stay is likely to be?
proper answers please.

i forgot to write that he also used to have the blank fits {not shaking} and when he had the icp test done the came back as did his speach but by the following day after the wires were removed his speech was gone as was the fits

Answer 1

http://www.macrocephaly-cmtc.com/thecondition.htm

http://www.patientcenters.com/hydrocephalus/news/getting_diagnosis9901.html

Not sure if these links will be any help

Answer 2

Yes, you made a wise decision. I would not want the care of my 19 month old son to be in the hands of professionals but would rather have the online community of cartoon avatars known as yahoo answers give you all the advice you need. I am sorry that I can not give you advice on the subject because I rarely get to far from the "what should I have for dinner" questions. Good luck with your question.