Still Waiting

Here is what my day looked like: Getting Ethan up in the morning is getting harder and harder, the excess protein makes him feel very tired. He looks very pale this morning and he complains that his eyes and face feel tight and swollen. Once I see that he has gained another pound over the weekend for a total of 4. I realize I have to call someone and my Doctor's office doesn't open till 9:30, two hours to wait.

So I decide to call Children's Hospital Nephrology Dept and see if they have received Ethan's request yet. To my dismay, they tell me that they have NOT yet received his referral. Even though Ethan isn't feeling his best, he surprisingly goes to School without complaining. I need him to go for as long as he can because I know that if he ends up on medication he will likely miss a lot of School.

 So seeing as how I can't call my family doctor to find out what is up, I decide to head to the gym and burn off some stress. As soon as my class is over, I head straight to my doctor's office. I was so not prepared to hear the secretaries answer that the reason she hadn't faxed over the request is because she couldn't find the fax #!     SAY WHAT????? Now it took everything in me to not go ballistic on her, but I have learned that you don't get what you want when you lose your temper. I have also learned that the secretaries hold all the power and if you are nice to them they often will go that extra mile for you. So I smiled sweetly and said I had the fax # at home and would go home right away and phone it to them. As I was about to leave the doctor's office she mentions that the doctor wanted to see Ethan after school today to check his blood pressure and go over his urine and blood tests from Friday.

I am very thankful that my family doctor even though he has admitted that he has no idea how to treat Ethan, he knows that we don't have anyone looking after him at the moment and he wants to make sure he is okay. The results are rather confusing, because believe it or not, Ethan's blood tests show that his Albumin levels are normal, which is a good sign. But that doesn't explain why Ethan is swelling and gaining weight. Normally the Albumin levels are very low when Ethan leaks protein into his urine. His urine tests do show that he has a fair amount of blood in it too. Which he said he expected, and he said in his opinion his Nephrotic Syndrome is definitely active. His blood pressure was also normal which is also a good, but again confusing. Normally blood pressure is high when swelling and protein happen. So these are some things that our family doctor would like answers to as do we!

 As we were leaving the doctor's office he said if we don't hear from Children's in the next day or so, I am to call him back. So for now we continue to wait and pray. Praying that God will answer our urgent prayers and open up a spot for Ethan to get in to see his Nephrologist, and I am praying big and asking God to find a spot for this week!!!!