Well, I wish I had more to report, and better things to report.....
The latest on surgery and testing....... Emmie will have a nuclear scan of her kidneys and an angiogram of her renal arteries the week of Oct 17th. We do not have the exact date yet, however we do know that we will need to be in Michigan 2 to 3 days for testing that week. Surgery should still be on track for the middle of November. I am hoping to confirm all dates early next week.
Today, Emmie had a routine check up with her nephrologist, Dr. Leiser (kidney doctor, but also her hypertension specialist). When we arrived, I was told he was on a leave of absence, and we would be seeing someone else. I know due to privacy laws and such, they are not allowed to give me any more info than that. All they could say was that he was on a leave of absence and they were not sure he was returning. I'm sure most of you reading this have not had a child with on going medical needs, but those of you who have will get where I'm coming from, and hopefully those of you who haven't had to deal with this, will understand too.
The first time Dr. Leiser saw Emmie, she was 2 days post heart surgery. She was 1 year old. She was still on a vent. We didn't know if she was going to live or die. At the time, I had no idea the level of bond we would make with this man. He became her hypertension specialist. He controlled and adjusted meds until we found what would work. At times in Emmie's life, we've had to see him weekly, biweekly, monthly. During that time, Emmie was having blood work done 3 times a week. We were marking her body with a sharpie to keep track of where the last draw was so we weren't using the same arm or leg too many times. I've made lots of late night calls to him over high blood pressure, and kidney function. He's reassured me, he's comforted me, and he's cared for my daughter like she was his own. I believe he loves her as much as I do. I believe he has stressed out over her blood pressure like I have. I know he has looked through her medical records, studied over them, and put in countless hours of work to make sure she was receiving top notch care. I've said for years that he is by far our favorite doctor! (Not that there aren't others we love as well!) But we have developed a bond with him that I can't explain. He's been through EVERYTHING with us. He takes his time to explain things to me. He would even let me ask my list of questions that I had researched on WebMD. I joked with him, that I do in fact have a WebMD degree! HA!!! He would let me try to take her off of meds, knowing full well it wouldn't work. He'd tell me "You can take her off hydrolazine, and call me in a few days to let me know her BP numbers." And of course, I would have to call him and say "You were right, I had to put her back on it." I love that he gave me a say in her care. I love that he treated me with respect, he talked to me like a human, and he cared. We have taken him gifts, food, and had tons of conversations about all kinds of things other than Emmie and medicine. I know about his kids, his mom, I know he's Jewish.
I did not realize how much I care for him as a person until today. I just started crying when I thought we might not see him again. I needed to talk to him today. I needed his reassurance that going to Michigan is the right choice. I needed his smiling face, and I needed the one doctor who knows my child inside and out to tell me its going to be ok.
I have no idea what's going on with him. They did tell me "He's ok." So, I guess that means he's not sick, but I'm not sure. I'm asking for my prayer warrior friends and family to pray for Dr. Leiser. Whatever is going on in his life that would cause him to take a leave of absence, means he needs our prayers.
While we are connected to and trust these doctors, I also know that The Great Physician know's my child inside and out even better than Dr. Leiser. He knitted her together in just the way he wanted her. While I do not understand why, I know it is a part of his plan for her life, and mine too. I pray daily for wisdom as we make difficult decisions. I pray for the doctors that God puts in our paths, and I'm asking you to do the same!
Thanks for hanging in there with us! We can not do this alone!! Here are just a few of the many pics we have of our favorite doctor. Most of our pics are of him checking her blood pressure, because for the longest time, she wouldn't let anyone else do it! Just him! I personally think he looks like a skinny Albert Einstein. :)