Saturday, April 7, 2012

Trying To Keep Track

Bruce has had some problems since hes been home from the hospital,  he just doesn't have a bowel movement,  he doesn't go unless hes on double doses of Myralax.  On this particular day he wasn't hungry, which is odd due to him taking prednisone.  He had a biofeedback session and when we left the office he broke out into a sweat and said he was gonna be hit me that he wasn't asking for something to eat and when he did eat it wasn't much.  Gastro asked me to get an Xray to make sure there was no blockage.  Of course it was a Friday, March 23 at 4:45.  Went to Urgent Care and it showed he had a lot of stool.  So every hour a double dose of myralax.  3 hours later, nothing. Still felt nauseated going to bed that night, next morning after 2 more double doses of myralax he finally went...just a bit!  Over that weekend he started going and the pain in his gut was subsiding...We see Gastro Dr on Monday...

Monday we get to Dr's office and he still thinks Bruce is inflamed and that the intestines just don't know what to do.  I ask about Mega colon...but he says you have to look really sick and that your kid just isn't well.  I didn't think Bruce had Toxic Mega colon...just Mega colon.  His intestines are too stretched out, so it doesn't know when to have a bowel movement.  I still think its what he has and yes along with inflammation, hes just a mess. Bruce has been trying to taper off of the prednisone...he got down to 20 then had to back it up to 30 again due to bleeding. On the 26th his Gastro Dr. recommended a very slow taper, but felt that Bruce was going to hit a ceiling and that he didn't see him getting past 10mg of the prednisone, this is being hopeful.  Bruce is on 30/20 of prednisone every other day.  Monday he starts 20mg for the week and then 15 the following week...if he makes it.  Crossing our fingers that he does.  Surgery is still out there and the less prednisone the better.  His arthritis has been acting up.  Probably due to not being on Celebrex and the Remicade not working like it did.  I hate prednisone.  For Bruce, when we taper off of prednisone, whatever medication hes on no longer works for him...since Remicade is not working to its full potential now...I will assume it will not work at all once... or if he gets off the prednisone...before surgery.
We got to talk to the surgeon and I like him so much.  Not a man of many words but he just has this ease about him.  We went over the whole procedure. Open Colostomy with stoma and making of a J-Pouch which will be in place of his rectum.  He will remove all of colon... from rectum...about 1cm from anus up to the ilium. Create J-pouch, attach small intestine to create stoma for bag.  7 to 10 days in the hospital.  Expect about 3 weeks of hard times and if healing goes well 8 weeks to reattach the small intestine to the J-Pouch.  Another 7 to 10 days in hospital.  3 to 6 months after 2nd surgery expect alot of stools per day, until the J-pouch expands and the body gets used to this new way of going...eventually the stools wont be so watery.

There were some questions I had to ask that were hard.  Is there a possibility of a permanent bag?  Will Bruce be able to have children? Will he be ok being under 4-5 hours?  And yes...death.  I hate the questions I asked.... and yes there are always possibilities but all questions I asked have 99.9% positive outlooks.  The surgeon saw no trouble because Bruce has had this disease for only a year.  Dr H said that he would get together with Dr. W to see if they could block out a date for this surgery.  We left and my husband and I felt comfortable with this visit and this surgery.  Except for the possibility of a naso gastric tube being placed the day before surgery.  To clean Bruce out...the liquid that he would have to drink is like "antifreeze", most kids cant drink it...So we shall see.  I heard its not pleasant to put in a naso gastric tube.  We shall see.  We got a call on the way home to schedule  an MRI with small bowel follow through...expect a long day!

That week Bruce developed a rash on both knees, the sides of each leg and on both elbows..not directly on elbows but up and down the underside of each arm.  Benedryl didn't do a thing for it. Weird to be symmetrical.  I forget that hes still a kid and he can get a virus. So pics were given to Dr N, and Dr W.  And he was checked for CMV by stool sample and labs.  CMV can wreck havoc on the gut.  So we are ruling all out before he has this surgery.  I think this was the last thing to rule out.  This is not something the Dr's want to do but it needs to be done.

  His MRI was this past Wednesday, started at 11:30 and out by 3:00...1008 pics. I did get to see by chance Dr. R, the anaesthesiologist who did Bruce's colonoscopy.  I liked this Dr. too.  I find out hes one of the Cardiac Anaesthesiologist, only 2 in the hospital.  I feel good about talking with him.  He thought Dr H the surgeon would do an excellent job and that "hes your man", He was very good with Bruce that morning of his colonoscopy and that I could request him, just let Dr H's office know.  Feel like things are falling into place...Feel a bit more in control.  Hubby called yesterday to ask about the MRI results but the NP didn't want to read us the results except to say he had a lot of stool and to double up on Myralax.  We talk to Dr W on Monday when all reports are back.