Happy Thanksgiving

Sorry it has been so long since out last post but really not alot to report.

Brody has tolerated having his right nephrostomy tube remove just fine and hasn't had any recurrence of pain that he had previously on the right side so we are relatively certain that the pain was from the tube. He had an ultrasound a week after it was removed and it showed no hydroneprosis (water on his kidney)-- Brody then had his left nephrstomy tube replaced as it had been in for nearly 2 months-- he was put under general anestesia for this but he did real good once again.

Our biggest problem lately is Brody simply feeling so good he ignores the fact he still has a nephrostomy tube on his left side. He wants to rough house and play with his brothers like any other 6 year old and we have to keep a close eye on him so he doesn't accidently rip off his dressing over his tube or pull the tube out itself.

He has continued to tolerate his chemo well and he has just started his 5th round (it follows a 28 day cycle). He is still pretty finicky about food but he has been doing a little better about eating different things. He has steadily been putting back on weight is about 44.5 pounds now-- this is about the weight he was when we first learned of his relapse.

He has been doing pretty well in home school as have all the boys.

Geordi had 2 friends over last weekend for a sleep over and the boys had fun playing and just being boys....the weather has been pretty nice for November--- so they have been playing outside enjoying the weather.... but also playing age inappropriate video games--- The boys got Call of Duty: Black Ops II on its release day.... Dad likes that they can play up to 4 player split screen for local game modes (not online) so we don't experience the "odd boy out" drama as much-- get it some when the boys play online.

We spent Thanksgiving at Trish's parents house and the boys enjoyed seeing their cousins and the rest of the family.

Thats really about it....

Bill

A Fun Time With Some Really Talented Birds

Watch "Feeding Some Very Hungry Birds" on YouTube

https://www.youtube.com/watch?v=L33iKqLvn0w&feature=youtube_gdata_player

The boys had a great time feeding birds at Parrot Mountain in Pigeon Forge,  TN.   They also had fun racing go-karts,  watching a magic show,  a circus,  and the Smokey Mountain Opry Christmas show.   We were only able to stay in Pigeon Forge,  TN for 2 days but it was 2 days packed full of fun.   They all can't wait to be able to go back again.  Hopefully we will be able to swing a trip there again next Spring or Summer. 

Trish and Boys in Tennessee

As mentioned in a previous post, Body had his right nephrostomy tube removed on Thursday. He had a some pain overnight on his back where the tube was (not where he has had pain previously) but we think it was just tender from having it removed. It only bothered him when he was laying on it. It has not bothered him since Thursday night.

 

We were concerned about "positional" blockage of his ureter obstructing the kidney draining to his bladder so we monitored his fluid ins and out for a few days and they remained close-- Friday & Saturday he had about 1400ml - 1500ml "IN" and had about 200 ml less then this "out" both days. This is close enough that we weren't too concerned about obstruction-- he went pretty regularly throughout the day and at night too.

 

Brody's left kidney is still not producing much (this kidney-- if we assume all the urine it produces flows into the bag oly produces about 1/10th as much as his right) and any time we have capped off the tube he starts having pain within a few hours as the pressure in the kidney builds up. He is scheduled to have this tube replaced on Thursday.

 

Trish and the boys left Sunday morning and got down to Pigeon Forge Tennessee about 9 pm... they rented a cabin there and were supposed to meet Trish's mom there who was coming back up from Chattanooga Tennessee after visiting Trish's sister. They will be there until Wednesday. Hopefully they have nice weather. I have to stay home and work this week-- we are having a maintenance outage (6 days) starting Tuesday and there wasn't any chance I was going to be able to take time off this week.

 

We changed Brody's dressings on Saturday-- the hole where his right nephrostomy tube was looked to be nearly completly healed but we put a small dressing back on it for now... should be healed up well enough to remove by now but the dressing on his left tube is partially overlapping it so we will likely just leave this on until thursday unless he has to have it changed before then (if it starts coming off or what not)-- Brody does NOT like the tape coming off.

 

Not much else to report-- the boys have been doing pretty well in their homeschooling and are hopefully enjoying their fall break.

 

Bill

 

 

The Boys Attempting to Find Some Candy from a Friendly Chipmunk... like they need anymore

The Boys Enjoying Trick-or-Treating Despite the COLD and Rain

Brody Had His Right Nephrostomy Tube Removed Today

Brody had several episodes of pain on his right side while trying to Trick- or-Treat last night.   Then he had problems overnight and awoke this morning with a lot of blood in his nephrostomy bag/tube on his right side.   I took him to the hospital.   They had us go to interventional radiology when we got there where they injected dye in Brody's tube and watched to see if the dye could make it all the way to his bladder in a non-obstructed manner.   Right-side,  they said,  appeared to flow fine with no obstruction and so they were able to pull the tube on the right side.   YAY!!!!  The left tube is not ready to come out so he still has that one.   Fortunately he has not been having problems/pain on his left side with that tube in.   Since Brody's right tube is out he has had no more pain on his right side and he has been far more active,  jumping,  climbing,  running,  spinning and just all around a very excited boy to be able to move without pain.  He did not enjoy getting the tube out at all though.   He said,  "it's always a lie when they tell you it's not going to hurt.   It just means it's gonna hurt a whole lot and it did! "  Poor kid.   He really has been through so many,  many episodes of painful situations.   Next week,  he has to have his left side tube replaced.  They aren't meant to be in as long as he has had this one in.   He will get general anesthesia for the replacement procedure,  thank goodness.   I am nervous about the left side being replaced.   He has not had problems with the left side.   I believe,  if it's not broke,  don't fix it could apply here.   I am afraid maybe if they replace it that maybe it won't be placed as well as this left one has been and it might become painful for him too.   I don't think his doctors believed it was his right nephrostomy tube causing him all the pain he has been having for so many weeks until today when it was far more obvious it was a problem and then saw how much better he felt when it came out.   I guess we gotta do what gotta do.   Keeping them in too long could increase chance of infections and the tube becoming obstructed.   It still makes me nervous though. 

The boys did have a great time trick-or-treating at Camp Miakonda (Cub Scouts camp)  last weekend.   There were lots of haunted cabins,  fun games,  and a haunted hayride.   They also went out Halloween night trick-or-treating.   It was a very chilly night and oh my goodness did they score a loot of candy.    Brody,  fortunately,  felt good for little while trick-or-treating before his pain and the cold got to him.   He feels so much better now.  

Let's hope that he doesn't have any issues with the tube being out and that he heals-up ok where his tube had been in for so long. .   We will be keeping close tabs on his ins and outs and he will get an ultrasound tomorrow while he's at the hospital for chemo to check for any possible hydronephrosis (fluid around kidney).   As long as his ins and outs are staying about equal and his ultrasound is clear and he doesn't start developing pain in his abdomen or back and he doesn't have significant fluid coming out the wound in his back where his tube was,  then he's a go to not need the tube on the right side anymore/will not need to have the right tube replaced.  

The boys and I were planning to leave for a short trip to Gatlinburg,  TN tomorrow after Brody finished chemo in the morning.  But we will need to hold-off on that for a bit until Brody goes at least a few days with flying colors without his right tube in place.   I don't want to be very far away from home and then Brody starts having issues.  Hopefully we will be able to go soon.   We were all really looking forward to the trip.