Surgery numero 3

I started this post 6 days ago. And I have yet to finish it. It's been typed, deleted, and retyped I don't know how many times. Sometimes I start to write and then get distracted. Sometimes I get half way through and then get interrupted. Sometimes I write something and then delete it because I think I don't even want to read it. And now, with 6 days of updates to write about, I find that I don't even know where to start.

Right now Adam and I are sitting in the surgical waiting room. Brody is having surgery number 3 as we speak. He's not quite a month old yet.

To explain the surgery as simply as possible, the urologist is removing the nephrostomy tube (the tube that is draining his left kidney into a bag outside his body) and creating a cutaneous pyelostomy...where they attach the renal pelvis right to the skin...meaning there won't be a tube outside his body.  The fluid from his kidney will then drain into his diaper. I hope.  Dr. Elmore said he is going to try to make the site low enough to where it drains into his diaper but far enough to the side that it doesn't interfere with his dialysis.  One of Adam and my biggest concerns was how permanent this is going to be...I don't want my son to have to pee out of his side for the rest of his life. The doctor explained that this is just temporary until he gets a little bigger and/or gets a transplant and then they can reconstruct his bladder (right now his bladder is extremely small since it never got used inutero). Apparently the bladder can be reconstructed using part of his intestines.

The other night, I was bored and unable to sleep, I hopped onto the CHOA website. After clicking on several different links I found a video about kidney transplants.  There was this husband and wife talking about their youngest son.  The similarities between their situation and ours is uncanny. The woman had an ultrasound at 18 weeks and was told something was wrong with her baby's kidney. She went back for a check-up ultrasound a few weeks later and was told something was wrong with both of her baby's kidneys. She was put on bed rest at Northside Hospital because she had no amniotic fluid and her son was born at 34 weeks. He weighed 5 lbs 14 oz., transferred to CHOA and was put on dialysis within the first week. As Adam and I watched this video we looked at each other and I said, "are they talking about us?!" ...they had another son who was a couple years older than this baby and their house even resembled ours. It was weird.  But when they got to the part of their story where they talked about their son's kidney transplant, I couldn't hold back the tears. It showed the little boy, post-transplant, running around with his older brother playing in the yard and I ached for that dream. Their son stayed in the NICU for only 2 months. He received a kidney from his uncle. He's thriving.  I know our story will continue to follow theirs and Brody will be chasing Ryder around our yard within the next couple years. I know there are still life long medications and possibly even complications after transplant, but I cannot wait to be tested to see if I would be a good candidate for donation. I never dreamed I would want to have surgery and give up an organ THIS badly.  I will do anything, literally, to just take this all away from Brody. My heart hurts.

I am extremely thankful that he is as strong as he is though. Having to deal with 3 tubes down your throat and multiple tubes in the abdomen, chest & arms pulling fluid out and pumping fluid in can't be fun. Last Tuesday (4/3) we got here around 7:30pm and were unable to go see Brody because one of the babies in the NICU had past away and the family was in there with the baby. This was right after I learned about another little angel that passed away just hours before. I'm sure a lot of you know who I'm talking about. That was a hard night. When we finally got in to see Brody I couldn't help but cry. I was crying for the Needham family. I was crying for the family that just lost their newborn baby. And I was crying because I am blessed with my two boys. Seeing all these babies in the NICU and other children around the hospital really makes you stop and think and be thankful for your own health and the health of your loved ones. I now know just what a miracle each and every one of us actually are. Ryder amazes me. Brody blows my mind. Even with all his complications.

Brody is out of surgery now.  We spoke with Dr. Elmore and sat with Brody for a little bit in the NICU, waited for him to start dialysis, and now we are headed home. Dr. Elmore said he was happy with how the surgery went but said he was able to look inside Brody's kidney and it is very abnormal. Although it is making urine, it is not filtering the blood very well. But we pretty much already knew that.  ...at this very moment, we just pulled out of the parking deck and passed an ambulance, and a medic helicopter is landing on top of CHOA.  Between CHOA, Northside Hospital, and St. Joseph's Hospital all right here next to each other, I don't enjoy driving around here. I pray for those being rushed to the hospital.

There has been a song stuck in my head for the past several days now. Kind of fitting since we are in the Easter season but we sang it in Church when I was pregnant, not long after I learned about Brody's renal defects.  I get that lump in your throat feeling every time I hear this verse: "How sweet to hold a new born baby, and feel the pride and joy he brings. But greater still the calm assurance, this child can face uncertain days because He lives. Because He lives, I can face tomorrow. Because He lives all fear is gone. Because I know He holds the future, and life is worth the living just because He lives."

...and here's a play by play:

Tuesday (4/3):
-Weight: 2.65kg
-Off Lipids and Hyperal (just clear fluids to keep line open)
-Blood gas good
-Continue same PD
-Feeds up to 14ml/hr

 Wednesday (4/4):
-Mag3 Study (renal scan w/radioactive tracer) showed no function of right kidney and decreased (limited) function of left kidney.
-Renal/Bladder ultrasound showed multiple cysts on both kidneys, no ureter on left side and extremely small bladder.
-Chest x-ray good and vent settings lowered.
-Same PD regimen
-Weight: 2.68kg
-Feeds at max 16ml/hr.
-Sodium low but potassium increased to normal (3)
-BUN and Creatinine way down (good!)
-Spit up for the first time (not good since he's on the vent he could aspirate.)
-Given Morphine and Versed

Thursday (4/5):
-Weight: 2.72kg
-Same PD regimen
-Blood work looks great
-Blood pressure up so given small dose of blood pressure meds
-Still spitting up. Could be back flow of gastric fluids from TP tube. Nurse practitioner slightly concerned but just wants to watch it for now. Could be "floppy sphincter".

Friday (4/6):
-Weight: 2.86kg
-Blood work looks great
-Same PD regimen
-Nephrostogram at 1pm. Radiologist seems to think nephrostomy tube is in the cyst (although surgery on 4/9 revealed nephrostomy tube is actually in the kidney where it is suppose to be)

Saturday (4/7):
-Weight: 2.94kg
-Adding 1cc of MCT Oil (Medium-Chain Triglycerides) 2x/day to breast milk to help him gain weight. This will add a whopping 13 calories to his diet.
-Looks a little puffy today due to fluid retention but labs still look good.
-Brody met Uncle Nick & Aunt Sarah
-Same PD, on room air, vent settings lowered

Sunday (4/8):
-Weight: 3.06kg (looking very puffy again)
-Vent lowered from 22bpm to 20bpm
-Stopping feeds at midnight and moving to IV antibiotics
-Receiving .5ml/hr of Albumin
-PD changed from 2.5 to 4.25 to help draw off more fluid
-Very agitated and warm today. Nurse doesn't think Morphine/Versed combo is strong enough for him. Suggested going back to Ativan and possibly Fentanyl. Blood pressure dropped when she gave him Versed. So they did switch back to Ativan.

Monday (4/9):
-Weight: 3.05kg
-Labs good. Sodium normalized & he's set for surgery.
-Anemic so blood was ordered just in case they needed it in surgery (they did not need it).
-Went in for surgery at 4:20pm and out by 5:20pm
-Sodium post surgery was 116 (normal is between 130 & 150). Given a bolus of sodium and then put on sodium drip.
-Nephrology ordered 4 passes of PD but because they got off so much fluid (negative 245cc's) they only did 2 passes.