update

[Guest guest]

Okay it's been a while. is having major issues and with 1. what I know

and 2. what I can find on the internet I'm starting to get really worried

about the little guy. In the past month we have had the following

problems: 1. The surgery that we did 3 times last year the Mitrofanoff

(where the urologist creates an opening through 's belly button so I can

empty his bladder that way, because was starting to get damage on his

kidneys) scarred over and the only way to open it up is to do the surgery

yet again, I trust the urologist I just don't trust the procedure anymore,

so his suggestion is to put a suprapubic catheter below his pull up line

good thing is he would be under for about 5 minutes the opening won't close

up because there is a little door/valve that is sitting flush with the skin

and you do catheters through there, 2. We followed up with the

rheumatologist (and yes I made an appointment with mine, I have the markers

for Lupus, I had the signature rash and I twisted my ankle 6 weeks ago and

the joint still hurts), anyways his tests for lupus and rheumatoid arthritis

(because he has joint pain as well) were negative, BUT when she was doing

her exam on him she heard a murmur so off to the cardiologist we go also his

cholesterol is still elevated especially his bad cholesterol (and no I don't

let him eat fatty foods either, its because of some of the medications he is

on for his behavior and genetics on my side of the family), 3. We get to go

to the University of Minnesota tomorrow to talk with one of the urologists

there to find out what we can do, a second opinion, I also have an

appointment set up for the beginning of September for the Mayo clinic (yes I

am going to drive 2 hours to go and see a specialist). Past 4 days he has

eaten maybe a total of one meal, not as many wet pull ups, he is starting to

swell up, I'm starting to get really worried here (looking online it could

be kidney failure, I did all the surgeries to avoid that). Like I said to

somebody tonight I think I am going to have a pity party tonight, the whole

why me? why ? why does he have so many different problems? why can't

he be higher functioning? (we have done an MRI of his brain and spinal cord

and his brain stem is smaller than what it should be and so is his brain oh

and he has a lipoma along L3-L7). I can't seem to find somebody else out

there with the same problems that has, I go to the urology groups and

most of them consist of females that are mentally functioning at a normal

level, their disability is paralysis.

Oh yeah I also forgot I got my van back last week on Tuesday, and totaled it

on Wednesday..........brakes wouldn't work on the van insurance company

totaled it out but we are doing a buy back and between my hubby and my

friend's hubby they will get it fixed for less than the check they are

sending me, only reason why we are doing the buy back is because we have

less than 100 miles on the brand spanking new transmission. ARGH I hate

vehicles!!