Wednesday, March 10, 2010

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.

2 comments:

  1. You really are a great mama. And I say this knowing that inside my head (when told that) I would get annoyed thinking, ugh, I just do what has to be done. But, you are an awesome mama to this baby boy! I had no clue on the EES and the diflucan. Loge was on diflucan quite a bit due to some abx or other either oral or peritoneal. I can't believe you guys are back at a 5 week countdown. I know I would be so upset. I was so upset when we found out last summer that instead of activating Loge in May (when he was ready) that we had to wait until Aug because his drs were on vacation! It all worked out for the best.

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