I read this quote the other day and it's been my motivation this week: "Life is hard, but life is simple. Get on the path and never, ever give up. You never give up. You just keep on going. You don't quit, and you will make it." Lawrence E. Corbridge
I'll start with all the good news that we've received, because truthfully, we have been blessed in so many ways. On November 2nd Matthew had his vesicoureteral reflux follow up study. We were told just before Matthew's transplant and after his last nuclear sonogram that Matthew still had grade III reflux which was unchanged since they discovered it at birth. Urology told us that Matthew would need surgery 6 months after Matthew's transplant. So, we went to our appointment fully expecting to go home with a scheduled surgery date. After the study, when we met with Dr. Wallis, he told us that Matthew had grown out of his reflux and that he could not see ANY reflux on the sonogram. Dr. Wallis continued to tell us that this was very uncommon. Usually, when kids grow out of reflux they grow out of it a grade at a time and they hardly ever see improvement in six months time. He told us we could discontinue Matthew's prophlaxis dose of antibiotics and that we didn't need to see him again unless Matthew got a urinary tract infection. Yippee!!! We eliminated one specialist and one drug from the list.
On Monday, Matthew had his heart catheterization and biopsy. Things looked so good!! His pulmonary pressures and diastolic function finally normalized. Matthew's echo looked great and his EKG looked perfect. We didn't have the pathology report from the biopsy back yet, but after talking to the cardiologist we all felt confidant that Matthew was finally over his rejection and his heart had recovered. After a VERY long day at the hospital I called Matt on the way home to share the great news with him. I told him that I felt like I could sigh a huge sigh of relief for the first time since Matthew's transplant. Then we joked about how everytime we allowed ourselves to feel optimistic about anything was usually when things changed. Then..... we got the pathology report back. Matthew has cellular and vascular rejection and he has it worse than the last rejection episode. The transplant team called and told me that they weren't going to treat it with high dose steroids. They felt like at this point, continued high doses of steriods may not be good for Matthew. They feel like because everything else looked good we are going to wait and see what happens and hope that Matthew's body will take care of it on it's own. Monday night and all day yesterday were super long days for me as I tried to wrap my head around what was happening and what could happen as we look to Matthew's future. It's true, we have always known that transplant is not a cure. We know that Matthew is still very sick. But still, we were hoping to make it through the first year with no rejection episodes and now he has faced two episodes in the first 6 months. I know that Matthew has the best medical care available and that he is on the very best drugs they make. Still, I am scared! I am scared that modern medicine may not be enough. I am scared to recognize the limitations of medicine and realize that we are running out of options.
Today I went back to Primary Children's to get a chest Xray. Matthew gets continuous feeds during the night and woke up in a coughing rage which kept him up all night. They felt like maybe he had aspirated some of his feeds and had pneumonia. Luckily, his chest Xray is clear. He probably has another virus they say. He also had some complications on Monday when he was extubated after his biopsy his airway closed off so they had to re-intubate him. The transplant team thought maybe there was some residual irritation that was caused by all of that. Who knows? Only time will tell I guess.
In the meantime we will continue to stay on the path and never give up. We will keep going day by day and sometimes minute by minute.