An Entire YEAR of updates including TRANSPLANT!

Wow, I SUCK at blogging.

Here are a few things that happened since my last blog post...a freakin YEAR ago!

March 2014: On the 27th, Brody had a cystoscopy where his urologist looked at his bladder with a scope to determine if it was viable. After the procedure, the urologist said he wanted to do further studies but was very hopeful.  

3/27/14

April 2014: We had one of the hardest (on me) ER visits. It was a typical visit in that Brody's nephrostomy tube came out and we couldn't get it back in ourselves so we had to go to the ER. But this time was different because he's getting older and instead of just screaming and crying, he was screaming "Mommy!" and crying. I have always been able to keep my composure but not this time. I was bawling like a baby and trying my hardest to help the nurse hold him down, when all I really wanted to do was pick him up and hug him. Anyways, the resident urologist couldn't get the tube back in either so we got admitted and the next day, Brody had his 15th surgery. With all that poking and prodding though, Brody developed an infection within a few days and we were back in the hospital. Another surgery and an allergic reaction later we were out of there!

Uncle Nick visits 

May, 2014: Fox5 Atlanta came to our house and filmed a story on us as part of a Mother's day program. It was fun, but I'm my own worst critic and I did not like watching myself on TV.  I wish I had said something a little more profound. Oh well. The boys were cute. The story aired on May 9th on Good Day Atlanta. You can click here to see the story :) All in all it was a fun experience! And we may or may not have gotten a few comments from Brody's dialysis nurses about him rough housing with his brother (probably not smart with a perm-cath in his chest, a feeding tube in his stomach, and a nephrostomy tube in his kidney!). May was also a really fun (NOT) month because Brody's transplant surgeon and urologist wanted to make sure Brody's bladder was ok before going forward with transplant. Brody had several urodynamic studies done to see how much fluid his bladder could hold. In the words of his doctors, it is not smart to transplant a good kidney with a bad bladder. Don't get me wrong, I agreed with the doctors and I am very thankful these tests were done, but having to cath my own son and push fluid to "stretch" his bladder is anything but pleasant. But as it turns out, Brody's bladder is a. ok.!! Thank the Good Lord!

Being interviewed by Gurvir Dhindsa

Gorgeous spring day at Stone Mountain Park

June 2014: I don't think anything significant (medically) happened this month...just regular dialysis and more urodynamic studies.  We did enjoy the great outdoors as much as possible knowing that a long hospital stay was in our new future.  We went the the Renaissance Festival in Atlanta and Bear Hollow Zoo in Athens. We attended a few outdoor concerts in beautiful downtown Monroe, and toured the Atlanta Botanical Garden. Then we went on my most favorite hike to date. We hike the Tallulah Gorge floor. It was a tough hike but so much fun. We also climbed Stone Mountain a few times and hiked Amicalola Falls. Adam and I also celebrated our 6th wedding anniversary on June 20th.

Tallulah Gorge

July 2014: We got our Transplant date!! We were given a little less than a month's notice, surgery was scheduled for August 8th. Every emotion you could possibly imagine was running through our bodies. I had my pre-op on July 21st and Brody had his pre-op on July 23rd. That next weekend we took one last vacation before surgery. We spent 2 beautiful days exploring the breathtaking sights of Charleston, SC.

Headed to pre-op

Ryder playing in a fountain in Charleston, SC

August 2014: Brody had his last day of dialysis on Aug. 6th. The nurses and techs surprised him with a giant card that everybody signed, gifts, balloons, and lots of hugs (and a few tears). We miss everyone (especially Ms. Amy & Ms. Brittany), they always took such great care of our little man. We were contacted by a Public Relations Coordinator at CHOA and asked if it was ok to take some photographs of Brody and of course we said yes. The photographer was actually in both my OR and Brody's OR and then took some family photographs of right before we left the hospital. Anyways, Brody was admitted to CHOA on Thursday Aug. 7th. and then Friday, August 8th was the big day!! My mom went with me to the hospital at about 5:30a.m. and my surgery was scheduled for 8:00. Brody's surgery started (I think) about 30 minutes after mine. Both of our surgery's were smooth and perfect. The surgeon said my kidney was "cute" and the perfect size for Brody. The doctors ended up taking out Brody's diseased left kidney and most of his non-functioning right kidney. His new kidney turned pink right away and started producing urine just minutes after blood started running through it!! I was able to see Brody the very next day and was discharged on Sunday the 10th. It was quite a struggle to manage Brody's pain and he said in the PICU a few days longer than expected because of that. But once his pain was under control and he made it to a regular room he seemed to improve by leaps and bounds. He was seen by several therapists and was finally discharged on Aug. 20th. Unfortunately, Ryder was sick and had to stay at his grandparents house so he missed Brody's homecoming. I am so so so thankful for our amazing team of doctors including my surgeon, Dr. Turgeon, Brody's surgeon, Dr. Pearson, and Brody's urologist who has seen Brody since day 1, Dr. Elmore. And I have to give a special shout out to Dr. Elmore because he closed Brody up after the surgery and it is one of the prettiest scars I have ever seen...you can hardly even see it!! They are amazing to say the least.

CHOA flying the flag for Brody

transporting kidney from Emory to Egleston

PICU to transplant unit

September 2014: After transplant, Brody had to get labs done twice a week and visit his nephrologist once a week. His medications had to be fine tuned and his doses were changed with almost every appointment. Brody had a stent from his kidney to his bladder which was removed on the 11th. And thankfully, I was able to use FMLA and take off work to be with Brody and figure out our new normal. Navigating the fine line between protecting the health of your immune suppressed child and allowing him the freedom to experience the joys of childhood is often exhausting. I've learned to heavily rely on hand sanitizer and sanitizing wet wipes. Lysol is my new best friend. I carry face masks in the diaper bag.  And my childrens' hands actually went raw from over washing. Boo, germs.

Brothers 9/15/14

October 2014: Oh I love the fall. So beautiful! But it also is the start of flu season. Ugh. Brody had developed a cold (cough and congestion) and on Oct. 6th I took him for routine labs. The nurse noticed his labored breathing and we were sent down to the ER and admitted for "respiratory distress". I did not like that technical term one bit. He was tested for several viruses but thankfully he just had a common cold. It just hit him a little harder since his immune system is suppressed. Two weeks later, a stomach bug invaded the Johnson residence. First, Ryder got sick, then Brody (which landed him in the hospital, again), then Adam, and finally me. UGH! But by the time Halloween festivities rolled around everyone was well again. We even took a trip to Hiawassee and went to the top of Bell Mountain and then went further north and hiked up Whiteside Mountain. Being outside with my boys is so good for my soul! Our routine was again normalized when I started back to work on the 29th.

Bell Mountain

Love those fall colors!

sick :(

November 2014:  Brody started preschool!! He attends 1/2 days about 3 times a week depending on our schedule. He was so excited and I know he absolutely loves being around other kids his age.  We know the teachers well and we are so thankful we found a great place for him to learn and grow.

1st day of preschool

December 2014: Oh the holidays! Christmas parties and family gatherings.  Santa visits and story telling. Baked goodies and decorating. Doorbell and sleigh bells and schnitzel with noodles. And thankfully, only routine doctor and lab visits!

haha!

2015!!! Happy New Year!!!
January 2015: We celebrated Ryder's 5th birthday with a family dinner at Stevi B's, a party with all his friends at Pump it Up, and then we got to see the Wild Kratts Live! And as a part of a Christmas gift we also went to the Monster Jam which is always a good time. On the 20th we met with a hepatologist for the first time because Brody's liver enzymes keep creeping up and we're not sure why. Normally, medications or viruses can cause an increase in liver enzymes but we were told that none of Brody's medications should do that and his viral scans were all negative. Brody's blood tests also revealed that his neutrophil levels were extremely low. This meant he was very vulnerable to infections so he was not allowed to go to school anymore (until the levels were back up to normal), he had to avoid crowds, we had to watch him like a hawk for fevers, and he wasn't allowed to eat any raw fruits or veggies because of bacteria. Yes, lysol is still my BFF.

Happy 5th Birthday, Ryder!!

February 2015:  Brody was scheduled for a (routine) 6 month post-transplant kidney biopsy on the 6th. He had his regular blood work done a few days before and they also ran a few blood tests on his liver. All the liver tests came back within normal range and since that didn't help explain the enzymes issue, his doctor ordered a liver biopsy to be done at the same time as the kidney biopsy. It turned out that his hemoglobin level was severely low so on the night of  Feb. 5th, Brody was admitted for a blood transfusion. He received 1/2 a unit of blood before the biopsies and he was to receive the other 1/2 unit after the biopsies however, the doctor decided against giving him that second half unit. Doctors continued to keep a close eye on him, drawing labs once, sometimes twice, a week. His neutrophils were still low so Brody still had to stay home from school. The kidney biopsy showed his kidney is still working great and the liver biopsy showed that something is possibly wrong with his bile duct. The hepatologist talked to us about genetic testing and explained that in utero, a baby's kidney and liver develop at the same time so for whatever reason caused Brody's kidneys not to develop correctly might have also caused a malformation of his bile duct. Genetic testing is expensive and takes a long time so we still don't have any results yet.

It's Spider-Man!

March 2015: Brody's neutrophils were back up to normal so he was able to return to school on Mar. 2nd. But the very next day his doctor called and said his hemoglobin was low again and he needed another blood transfusion. He got one unit of blood and was referred to a hematologist. Thankfully this issue has seemed to stabilize and he seems to be doing ok.  We took a trip to the zoo with my mom for her birthday. Then we celebrated Brody's birthday with a family dinner at his favorite place, Chick-fil-a. Brody was battling an ear infection at the time so we didn't do to much celebrating. It seems as though we just can't keep him feeling good at the moment. Today (the 27th) he again woke up complaining about his ear. This will be the 3rd visit to the doctor this month for ear pain and a lingering cough. Other than that he is doing well. It's back to CHOA tomorrow for  more blood tests. We just keep on keeping on :)

getting some blood 3/3/15

My sick boy

I can't even begin to express my gratitude to all my family and friends for helping us get through this past year. All the prayers, calls, texts, messages, meals, etc. have been so appreciated and have not gone unnoticed. I seem to be in a constant state of frazzled so if I didn't get back to you or say thank you, I sincerely apologize. Every day is an adventure with boys and I wouldn't have it any other way.  

Fishing with Daddy at Tribble Mill Park 3/15/15