[Mybabe4me]

Hey everyone,
Just wanted to try an update you all. Becca wrote a very long email today. she is very upset because a lot of family memebers are trying to get her to move Mikey to a children's hospital. so the bottom part of the email is not really for anyone but her family. I have a busy night. i have just got home not long ago. I just got back from taken Babybear for his accupunture, my son and girlfriend came for supper, now I have to go swim Babybear and do his other therapies. So I am going to put Becca's email up for you to read. sorry if she sounds a little harsh, but i guess she needs to put her point across.
we are still needing prayers. Thank you all.
hey everyone. i just wanted to let you all know whats going on with mikey. dad (chris) was up here today when the neurosurgeon came in, so it was helpful with him asking questions as well. first off, they decided they were going to wait it out. see what would happen, if he would keep vomiting and what not. he started to eat a little more and started to become active again. when neurosurgery came in again today, he said his soft spot is still soft, but you would call "full", so they are going to watch it even more carefully now. later one, when dad was here, dr. wilson (who was the doctor who performed the surgery to begin with) came in and went over a couple of things. he said that he does not believe (and it does not show) that the ETV has failed. what has happened, was when they first did the surgery, lots of fluid was able to leave the ventricles, which caused a spot in the brain to have nothing there. well something needed to be there, and the brain didnt expand quick enough, so some of the fluid that was released went to the right side of his brain and has stayed there. well now they are finding since this is reducing, the ventricles are enlarging again to fill the void. they have not enlarged a lot at all. so because of this, they are going to be placing a drain on the right side of his brain (an external drain) to "drip" the fluid out. this drain will be there for several days. this is because if they drain the fluid too quickly again, the brain wont have enough time to expand before more fluid builds up there. so if they drain it slowly, they are hoping the brain will fill the void. he said he will absolutely NOT put the shunt in right now. it poses more of a threat then anything, because the fluid would fill up in the spot on the right side and cause even more pressure to his brain then now, which would be taking a HUGE step back. he said three things could happen from here on out. one, he may need it drained again, depending on if the brain fills that void or not. two, they may place a shunt. and three, because the ETV has not techinically failed, he may still need nothing done. right now, its a waiting process. they didnt really want to do anything yet because of the infection. they didnt want to pose more of a risk of him getting it back or worsen it with surgery, but they feel this would be the best thing for him, as do i and mike.
we also had physical therapy and speech therapy in today to feed mikey so they could see what he is doing when he eats. he is still not eating properly again, which is weird because he was doing fine, then went downhill (signs of the increase pressure in his head). so tomorrow (busy day by the way) he will be brought to radiology in the morning and fed some juice and an xray machine will watch were it goes. just to make sure its not going to his lungs (cause he is coughing while eating). but he is delayed when swallowing right now. he keeps it in his mouth, and then a few minutes later, he will swallow (something he wasnt doing before). so they think he may have a delayed response in his brain. however, they believe this will go away once the extra fluid is off his brain. they are trying everything right now to find out what is going on. we also have another ct scan tomorrow to see what mikeys ventricles are doing. again, its going to be a busy day.
now, to get to the most important part of this update. again, i am having to put my foot down. i know a lot of both sides of the family have strong opinions that me and mike should be moving mikey down to boston. HOWEVER, the neurologist was the one who looked over his paperwork down there, not neurosurgery. the neurosurgeons who are up here, have already worked on mikey, and know what they are doing. he did not develope meningitis from the surgery, but from the removal of the stitches at his PCP. also, that would mean every neurosurgeon and neurologist would have to learn mikey from the start down there. the neurosurgeons here have alreayd signed on to mikeys case and have been up several times A DAY to check on him. they will continue to do so until they think mikey is okay, which will most likely be a good week or so. i am not trying to piss any one off here, but you all need to understand WE ARE THE PARENTS. STOP TELLING US WHAT WE SHOULD DO WITH OUR CHILD. we appreciate all of your concern, but we believe he is getting the right treatment here. IF ANYTHING WAS TO HAPPEN TO MIKEY, THEN IT WOULD BE ON OUR SHOULDERS, NOT YOURS. we are looking for SUPPORT right now, we are not looking to be TOLD what we should do. thats not support. there are alot of people who are upsetting me and michael right now, and thats not what we need. so please, if we ask you to not speak about it, dont. we understand people have opinions, and we appreciate hearing them, but thats all they are. opinions. we make the finally decision and dont intend on being told we did wrong because of it. as all of you have said, we are awesome parents, so why would it change now? we are doing what we feel is the best for our baby. now i dont care if i sound bitchy, cause like i said, we are starting to get very frustarated by having to CONSTANTLY tell people to BACK OFF! we are not saying you cant come up here, or you cant have an input, but PLEASE, respect our decisions. thank you
becca