On April 27th, 2012 Brody's doctor explained that they were over-dialyzing (is that a word?) him and they were going to skip dialysis for the day. One day quickly turned in to a week, then a few weeks, then a month. Brody came home from the NICU without requiring dialysis but only orders for biweekly lab work. His doctors kept predicting that he'd eventually have to go back on dialysis before receiving his transplant but it was just a waiting game.
Well, it has been 1 year, 5 months, and 5 days. His little body has finally outgrown his kidney function so tomorrow he will restart treatment.
We were given the option to try peritoneal dialysis (which is what he was on while in the NICU) but that requires surgery to put another catheter into his abdomen (which would make 3 tubes in his tiny round belly), and 8 hours of treatment every single night. We would have a machine at home and Adam and I would be trained to do it ourselves.
Our second option was hemodialysis which would have to be done at a pediatric dialysis clinic, 3 hours a day for 3 days per week and it would require a catheter in his chest.
Even though we live an hour from the closest pediatric dialysis clinic, and both Adam and I work full-time, we went with the second option. We saw how uncomfortable Brody was while on peritoneal dialysis (filling & draining his belly over and over) and to be honest, it was extremely nerve wracking...I'm not sure I would be able to sleep with that going on. Ugh, I get anxious just thinking about it. We will make our schedules work- Adam can work longer hours if needed and even on the weekends, family has offered to help, and I can continue to work and build up sick time and take him myself every so often. We'll have our nights with only one machine to sound alarms (his feeding pump) and we know that this will be temporary. It's just a short bridge on our way to a transplant. He will hopefully feel much better (although he really doesn't act like what I would assume a sick baby to act like), eat better, and gain weight faster so we can reach our ultimate goal: transplant. Right now he is around 19 lbs and almost 19 months old. Just 3 more pounds to go...but that could take a few months.
I've already had the blood test done to see if I am a match to be a donor for Brody. Thankfully I am, as is my sister-in-law, Abby who also got tested. I hope to begin the rest of the work-up (MRI, ultrasound, etc.) within the next month or two to see if I'm healthy enough to donate... I hope we are celebrating Brody's second birthday fully recovered from transplant surgery. I can't wait to see him running after his brother and playing right along with his cousins. Right now he is a master crawler, a very cautious climber, and quickly becoming a bona fide walker! He is walking more and more every day and gaining the confidence for speed! Although he still doesn't really want to eat food, he'll put anything he finds on the floor right in his mouth. We just started speech/feeding therapy and I'm excited to see how this helps him. He is so happy and giggles at anything Ryder does. He has his momma's temperament, and his daddy's sense of humor. He likes to play peek-a-boo and loves to be outside. He likes to watch Spider-Man and Mickey Mouse Clubhouse and will dance to any and all music. He can say "DaDa", "Uh-oh", "uh-uh" (as in "no"), and "DUH" (this can mean both "duck" and "dog". And I think "I want that" and "go over here" and "what?" and "I want to go out side" and "yes, I want my bottle"). He can say "down" and recently learned "go dawgs!" and no, he still hasn't said mama. He has also started pointing at things he wants. I wish I could bottle up the cuteness and keep it forever.
He gives the best hugs and the most perfect kisses- smack and all.
So for now we continue to wait. Be patient, continue praying, and trust God to comfort and heal Brody. I know a transplant won't "cure" him and this is something he will have to deal with every single day for the rest of his life, but man will it be a sweet day.
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