Friday, November 14, 2014

In Boston

Hello everyone,

We made it to Boston in one piece.... Even with the snowy weather. Thursday was a busy day at the Hospital with a DEXA scan (to check bone density), echo, stomach ultrasound, X-ray, and appointment with our new cardiologist Dr. Blume. We were there from 9am to 5:30pm.

Dr Blume was great and seemed extremly knowledgeable. Although I nearly had a panic attract when she mentioned the plans I have now settled down enough to give it a try....

We are going to completely deprive Lilli of water and salt :( she said it's going to be a miserable 5 days. Her body CRAVES water and salt because of her anatomy, her heart tells her she NEEDS it, but it's completely counter productive and actually is making her heart work super hard and is making her pressures go through the roof.

As a mother (especially a health nut) at first thought I said NO WAY! How could I possibly tell my daughter she can't drink ANYTHING for 5 days (and then super limited after that, like literally an ounce a day)! Dr Blume said its rough and she will make us feel like we are killing her at times. But if this means NO TRANSPLANT (for now) & she is healthier and happier in the long run I'll give it a whirl. I just emailed Dr. Blume a million more questions like "what about her digestion, her liver, her skin....." But I guess no minor side effects could be worse than transplant and all that's required with that.

She said she actually had a patient with such horrible PLE he was requiring tubes to drain his stomach fluid and was listed on the transplant list.... After the fluid restriction he improved so much they even took him OFF the list as he was too healthy! He was 16 and he said he thought it was going to be impossible but now he feels so much better and has trained his body not to crave it he said it "wasn't so bad".

Prior to me giving up sugar, wheat, dairy, and processed foods and I would of said NO WAY I could do it.... So I'm attempting to draw off those experiences.

We will be admitted on Sun afternoon, Monday will have some testing and lots of consults regarding the transplant evaluation. Tuesday Lilli will have a heart cath, as they can not figure out why her pressures are so high.... Her pulmonary veins actually seem in good shape so they need more info. The rest of our stay will depend on how she recovers from cath and then we will do the "water restriction" the entire stay. I'm praying for a Sunday discharge.

We probably won't know the transplant answer until after we come home. We will have a teleconference with Dr Blume and our MN team when all the results are in. Plus if this water things works we might not even need the answer now :)

Today we had Hospital free day, we went to the New England Aquarium and had a fancy seafood lunch :) tomorrow we have another off day and might find another fun place to visit.

Thank you for all your prayers and finical support! It's been such a blessing.