13 days to go!!!!

Less than 2 weeks to go for transplant.  We went to the doctor today, well actually 3 doctors today.  Saw Brayden's kidney doctor and she is so impressed at how good he is doing.  Saw the urologist that fixed his bladder and he is very pleased with how well he is doing.  You know, Me and Mom were talking today and we said that these past few weeks havent been as horrible as we thought they would be.  I expected dialysis to be a pain and for him to be sicker than ever but he has been AWESOME.  Besides the normal puking business that he does, things have actually been easier.  I dont have to worry about him being under hydrated and throwing all of his labs out of wack, I dont have to try to get as many calories down him as I can, since he can only have a certain number of ounces a day, I dont have to change as many diapers as we did before since he doesnt pee.  What HAS changed is that we have to put a catheter into his bladder and wash it out with saline 3 times a day, we have to do dialysis every day instead of 6 days a week and his BUN and creatinine are higher than they have ever been, but that is to be expected since he has NO kidneys now!

13 days from now, life as we know it is going to change drasticly....FOR THE GOOD!!!!!!!




Im not nervous YET, gimme the weekend before and I will be a nervous wreck...Not about my surgery but about after his surgery.



More later. 

Just call me MURPHY...

Brayden before surgery #9

Incisions: Bladder augment with foley draining blood and Right side neprectomy incision (matching one on the left side)

UGLY kidneys. They are about the size of walnuts. They should be at least twice that size and smooth. They really should look like kidney beans.

Murphy's Law: Anything that can go wrong, will go wrong.

Its decided, I am going to change my name to Murphy.

We are 1 week since Brayden's nephrectomy and bladder augmentation and so far we have had 5 glitches. 2 minor and 3 major ones.

1. The first night that we came home from the hospital, I realized that the solution that they gave us to use did not fit our dialysis machine tubing. So, I had to manually fill Brayden up for his last fill using syringes. (not the best situation even if I did do it as sterile as possible)

2. He has a UTI. He has a foley catheter in his bladder that we are irrigating with saline 3 times a day. We have to do this because he has a "dry" bladder since he doesnt make urine because he doesnt have kidneys anymore. Everytime we open the catheter to air, the risk of introducing bacteria is there. So, hence the UTI. I noticed yesterday that he winced when I was irrigating it and so I took some to work and saw he had 10-20 White blood cells. I called the urologist who said culture it and I thought it would be okay to wait until today. Well, Mom was keeping him and he was fussy, sleepy and listless so I had her bring him to me. I irrigated his foley again and this time the WBC's were "to many to count". He was super super fussy, his color was off and I could tell he was pretty sick. That leads to #3

3. He has peritonitis too. Last night we were collecting our normal monthly specimens to take to Dr. Malagon's office today. His first drain fluid was really cloudy. We started antibiotics immediately in the fluid and it had cleared up alot by this morning. He had a "bunch" of WBC's in the PD fluid so that confirmed he had a peritonitis. We are treating both the UTI and peritonitis with the same antibiotic because we are thinking that it is the same bug, that the UTI caused the peritonitis. He is on oral Keflex and we are putting Ancef in the fluid. That leads to #4

4. We almost screwed up....Brayden will be taking Diflucan to prevent a yeast infection in his belly from all of these potent antibiotics. He already takes Erythromycin (EES). EES is an antibiotic but in very small doses works to help increase gastric emptying times. It helps with Brayden's digestion and throwing up. Well, EES + Diflucan = REALLY BAD If you put them together (even with in 24 hours of each other) then they have a reaction that can cause cardiac dsyrhythmias and sudden death. SOOOO, we wont be starting that until tomorrow night (36 hrs apart).

5. Transplant people called today and Dr. Grandas has to go out of town the day after transplant was scheduled so now they pushed it back a week. I guess it isnt that bad because he has to be infection/antibiotic free for 2 weeks before they will transplant anyway but still. I was counting 4 weeks from yesterday and now I am back to 5 weeks from yesterday. It just sucks.

Otherwise, things are going pretty good!! This peritonits has really kicked his butt this time. Last night he woke up 5-6 times crying because his belly hurt. He then woke up screaming at 330 this morning and nothing but me holding him while laying on the couch would make him stop so, needles to say, we slept on the couch last night.

He was in a good mood for about an hour today. He smiled and played a little bit with the girls from work. Now, he is sleeping in his swing (that he is WAY to big for) peacefully. Yeah for swings!

I know all of the other kidney kid parents know what I am feeling right now. Although it seems kinda bad at the moment. I know other kids that have it FAR worse than we do. My mom tells me all the time what a wonderful mom I am......I may be a wonderful mom but wouldnt any mom do the same thing for the miracle that they brought into this world. Even mom's that aren't biologically related, would give their lives for their babies.

I am thankful that we have had such a smooth sailing since May of last year. I guess God thought that I would handle all of this better in small "bad months" than a lot of little issues all of the time. Works for me!!!!! As long as my baby gets what he needs, I am willing to do anything to get it for him.

Surgery #9

Brayden had his 9th surgery...well, 9th anesthesia. He has had 15 surgeries but some were grouped together. Anyway, its over and done. The docs took out both of his kidneys and used his huge, stretched out ureters to augment his bladder and make it 30% bigger. It took 4 hours but he did fine.
He only needed 2 doses of tylenol w codeine last night. I am so proud of my baby boy. He is such a trooper!

We will be in the hospital for 7-10 days until we get dialysis just right. Then on April 6th we will transplant!!!!!!!