Mason's Story Continued

After we got home from the hospital, we walked around in a daze for awhile. We didn’t have the new parent jitters, concerned about how we move, hold, change, and bathe him. We had learned quite a bit watching the nurses in the PICU, the only silver lining to what we had been through. Even though they had to pick him up from his crib and place him in my arms because of wires and tubes, I saw that they weren’t overly gentle. They were confident in their movements, and it gave me confidence. But the daze was hard to get out of. I suppose a bit of it attributes to post traumatic stress, whatever it was, it was heavy.

There was a break in the fog though, when I asked Travis to change a diaper. It was his first one since we had been home. Big deal for Daddy! I stood next to him, in case he needed an extra hand, and then it came. I’d guess about 50 mph, flying poop! It got all over Travis’s pants and had he not been standing there, it could have left at least a 5 foot skidmark on our carpet. FINALLY! Laughter we had not been able to have for 3 weeks! After that moment, our shoulders relaxed a little bit, our jaws loosened from the clench. We needed that release, and apparently so did Mason!

We had a nurse come by the house every few days to check Mason's weight, and each time he had an increase. With each weigh, more tension released. Our first pediatrician appointment, the doctor said, "Treat that baby like a normal baby". He said we had ICU brain and that we were home for a reason. More stress taken off our shoulders.

And then we got into a routine. Eat, sleep, poop, and repeat. His sleep was so good, we tried not to talk about it too much, for fear something would change! He continued to gain weight and we started to heal the emotional wounds that had been hanging on since leaving the hospital. Looking back at pictures, you can really see how quickly he improved. These 2 pictures were taken about 2 weeks apart. The left one is 4 days after getting home, and the right is 2 weeks later. Mama's milk does a baby good!

We had a follow up appointment with the urologist, Dr. Winslow, who did the surgery 2 weeks after getting home. Blood was taken, and his creatinine had come down to around 0.7. We wouldn't be seen again for another 2 months. That freaked me out! He went from having his blood drawn and scrutinized everyday, and now they won't even be in contact with him for 2 months! It gave me a little hope also. He prescribed him a long term antibiotic to be taken everyday. Even though antibiotics are frowned upon, it keeps him from getting a kidney infection.

2 months later, we had an appointment with a pediatric nephrologist (kidney specialist), Dr. Ristaino, who did an ultrasound. Our little bubble of denial that we had built up was popped. An easy description, his left kidney still had grade 5 reflux, right kidney is small for his size. She was very informative, and reminded us that this is something that is a long term concern. It's not something that will have answers any time soon. The next week we saw Dr. Winslow and Mason's creatinine had come down to 0.5. The doctor was pleased with the improvement and told us that it was what he was expecting to see. His next surgery would be around a year old. See ya in 3 months!

Our holidays were wonderful. Mason's first Thanksgiving, Christmas, and New Year's Day had been perfect. Not quite Norman Rockwell perfect, there weren't any horse drawn sleigh rides, but pretty darn close. As you can tell from the pictures, he developed some delicious chubs and rolls and was hitting his milestones like he should. Rolled over, sat up unassisted, started solids. My denial bubble was growing.

At the end of January he had his next set of blood work and ultrasound, then February 14th, Valentine's Day, was his next doctor's appointment. *POP!* Denial bubble burst. His creatinine was 0.4, still great on current kidney function, but the ultrasound was still showing a very large, very fluid filled kidney. The right kidney also had fluid in it, but is small for Mason's size. There is a decent amount of healthy tissue around the fluid though. Dr. Winslow wanted to schedule the next surgery for the end of April, when Mason is 9 months old. I was kind of taken back that he wanted it to be so much sooner. He was pleased with Mason's growth, because sometimes kidney problems can cause stunting and he feels that he will be strong enough to handle the surgery. The nephrologist agreed and she feels the sooner the better. Right now his kidneys are functioning at 100%, and the sooner we try to get them to heal, the better his chances are for the future. We have been fortunate that he has never had an infection, because that would cause definite scarring.

The Surgery: Ureter Reimplantation - It's a long explanation, so basically, his plumbing is going to be reworked. The link will explain it better than I can.

The surgery is scheduled for Tuesday, April 19th at St. Mary's Hospital. It should take about 3-4 hours to do the procedure and he will be there for about 3-4 days recovering. The point of the surgery is to save the healthy tissue so that he can have enough healthy kidney to sustain him for the rest of his life. A person only needs one to live a full life. We are hoping that with both kidneys combined they will equal one healthy kidney. But to continue the theme, We Will See. There are no answers for us at this point. Just hope.

My feelings are as to be expected. I don't want this to have to happen. The last time, I didn't have time to think about what was going on. It just was. Now, I've had 2 months to watch the date get closer and the reality to soak in as deep as it can. We have created a mother/child bond that is so strong. We spend a lot of our days staring and smiling at each other. I have stretches of days where I have mini crying episodes all day, and days where I am at peace with what needs to happen. Bottom line is that I don't want my baby to hurt. Ever. My heart breaks everytime I think about what he is going to have to tackle again.

He has protectors and so many people who love him. He has prayers all over the world coming his way. I owe it to him to be the strongest person he knows. To hold myself together as best I can even if on the inside I am about to crawl out of my skin.

We Will See.