Chris is doing such a good job on telling what is going on that I wanted to mention some great things about this hospital and the care we are receiving.
First, everyone has been very nice. From the person who checks you in to the doctor who is doing a procedure of any kind. There are even both in and out-patient therapy dogs that make things a bit easier on the little patients. Piper loves them! They help her to recover quicker from the “stress” of getting stuck when getting blood tests and basically doing something she doesn’t want to do. This place is all about the children and their families. I’m sure that is what you expected but it’s so much more than that. Everyone cares about your child. People smile in the hall! (Not common here in Delaware.) All patients get a free Mylar balloon from the gift shop because kids love balloons. There’s family resource center with toys, crafts, books, etc so your child isn’t bored. The list goes on and on.
Not only do we love Piper’s Nephrologist, Dr Tapia, but every doctor on the nephrology and transplant team is wonderful. This morning, Dr Tapia invited me in on the discussion the whole team was having regarding Piper’s care. This NEVER happens in hospitals I’ve worked with. It’s fascinating to see the doctors work together as a true team attacking a problem. Again, this is not something I have seen in most doctors. There are no egos here!! They are all very patient with me and the way my brain works; seeing the big picture first then breaking down to the smaller steps. All of the doctors tell you what is going on, what they are thinking and the different scenarios expected all in a way that is not alarming but to prepare for what lies ahead. I know Chris said he was very disappointed in Dr Griffin. I agree there was more doom and gloom there but he is after all, an oncologist and they have a completely different thought process than other doctors. I still think he is very smart and I’m sure a good doctor. He wanted to make sure that we didn’t have any false expectations or beliefs. We need to remember that if it wasn’t for Dr Griffin, we never would have met with Dr Dome who was fantastic. (and one of the top Wilm’s Tumor experts in the world.) There’s always someone that has to be the one to tell you what you don’t want to hear.
I’m going to wrap this up by telling you again how wonderful our doctors are. Chris got a call from Dr Tapia around 9:15 pm saying they are going to start dialysis and possibly remove her kidneys tomorrow morning. Our little baby’s body just can’t keep up and get rid of the fluid. It’s scary but needed. I know in my heart that Dr Tapia cares about our little girl like she was her family, only unbiased. Tomorrow will be a very long day but we will make it through. We are so very fortunate that our little baby girl will be “fixed” when all is said and done. She will have a normal life where she can run and play and anything she wants to do. We are blessed.
We love you all and appreciate the thoughts and prayers from all of you.
Erin and Chris
