As many of you know, I have been trying to decide if the Children's Hospital of Wisconsin is currently the right fit for us and if they are doing enough to manage Allie's medical care. There is no doubt that Dr. Rudolph and the whole feeding team at CHW has provided great care for Allie, however in the past 6 months, I feel there is something lacking. There has been no advancements in Allie's medical issues - no new tests have been run and the only thing that has changed is her feeding schedule. With every appointment, our feeding team was tweaking her feeding schedule and all it did was cause more vomiting and an upset Allie. I don't want to say that the CHW hasn't done anything for Allie because that would be a lie. They have helped us through many difficult times and have ran many important tests on Allie to help us find a diagnosis. Dr. Rudolph and his team has worked very hard for Allie but honestly I think she has their medical team stumped. They don't know why she doesn't eat and they have exhausted every test to help determine this. They don't really know what direction to go in next, they are winging it like we are. On numerous occasions, they have admitted they don't know why Allie doesn't eat and they keep telling us we might never know. There is nothing wrong with a medical professional that cannot diagnose someone but as Allie's mother, it's very important to me to know when they are done searching for answers for her. If they are done, it's my decision to keep searching or to just accept things they way they are.
For those of you who know me well, you know I will never give up. I may start accepting the fact that Allie is tube fed and at one point stop searching daily but like every other mother out there, we will never give up. At this point, I am still determined to figure out why Allie doesn't eat and honestly I spend 2-3 hours daily on the computer doing research in hopes of finding a disease, syndrome or something else that may be causing Allie to avoid food at all costs. Do I like doing all of this research and letting it consume my life - NO - but at this point in the game, I feel it still needs to be done and I am the only one who is going to do it.
Since I am no longer getting the warm and fuzzy feeling from the CHW, I solely made the decision to find medical care elsewhere. We went to Dr. Brown here in Wausau for a 3rd opinion and in the back of my mind, I was hoping he was a good fit so he could take over Allie's medical needs. As you know from my previous post, Dr. Brown is treating us great and really cares about Allie. After our appointment yesterday, I made the important decision to stop treatment at the Children's Hospital of Wisconsin.
We had an appointment set at the CHW for December 1st. I called the scheduling office and cancelled that appointment and told them I wouldn't be needing to reschedule. Of course I had to call our nurse so she would be completely informed and she could let Dr. Rudolph know. I spoke to our nurse (Mary) just a little bit ago and she was surprised to hear we are leaving. She said she would inform Dr. Rudolph and if he had any questions, he would call me.
So, I breathe a little sign of relief tonight because I was hesitant on making the decision of not returning to Children's. It's a big decision to decide who takes care of Allie's medical needs and as her mother, I just want to make the right decisions for her and her care. The best part is, Dr. Brown used to work at the CHW and he's one of the GI doctors that help set up the feeding teams. He knows Dr. Rudolph and said he would work with him if needed . So these things put my mind at ease. After all, Dr. Rudoloph is the first GI doctor to know Allie from the very beginning so it's hard to leave someone who knows her complete medical history.
However, I have thought about finding new medical care for Allie for a while now so I have done my research and really thought about this. After all, I am the one who has Allie's best interest at hand. Nobody is going to care for my child like myself and Matt and we have to do what is right for her.
Every decision I made is for our little Allie Rae. I can only pray that when she grows up, she will understand the reasons we have made all these decisions and the reasons we have decided to proceed with pursuing a diagnosis for her.
|Here is Allie Rae a couple days after she was born.|
|Chloe being a great big sister and giving Allie a tube feeding (or helping I should say)|