Dylan didn’t wake until lunch time today. I made him his favorite pasta sauce but he only ate a quarter of the bowl, although I managed to get 3 cans of Fanta into him. I know soda is not the best but it’s better than nothing. I wish he drank milk or those hydrating drinks but he won’t. Anyway, every hour he was on the toilet and it was like pure water. By 7:30pm I rang the doctor and she suggested I take him into Urgent Care for them to check his electrolytes. We arrived at Urgent Care by 8pm and after a few problems with trying to draw blood from his line, eventually we got enough blood to test and in the meantime they hooked him up to some IV fluids. His CBC came back great with his hemoglobin at 104, platelets at 255 and white blood cells 3.5 but his potassium was very low due to all the diarrhea. He was given 2 potassium infusions and then tested again. By midnight his potassium was good again and then they gave him high doses of fluids to get us through the night. While we were there Dylan had lots of diarrhea and they increased his Lomotil dose to every 2 hours. Finally we arrived back at the Ronald McDonald House at 2:30am and we will return to clinic at 8:30am for his IV antibody and Pentamidine. The biggest issue is the weight loss, he is scaring me at how thin his has become in only a few days. Tomorrow we will weight him in clinic and get an official amount that he has lost. When he started the trial he was at 16kg, and at a guess he now only weighs maybe 14kg. While we were are Urgent Care, I couldn’t help but think how much it was costing. I talked the doctors out of prescribing Octreotide, which is an injection to help stop the diarrhea. Dylan has had it in the past and it did not work, but my main reason for not wanting to try it again was the cost, it is ridiculously expensive. I also tried to talk them out of doing tests on his stool but I didn’t win that discussion. They must think I am so terrible asking and questioning every test and drug, but I am frantic at the costs. I keep thinking that I must conserve the costs to what is critical for his care and try and skip what is not crucial. I wrote to the bank about our house and explained our position, asking if we could extend our current arrangement with paying half the mortgage amount. Tim received a call today from them, saying that they need to evaluate the house before they make any decisions. I hate to even think about it, it makes me feel sick knowing Dylan and I may return to Australia, never seeing our home again. Tim is going to be so stressed trying to find a place to live and packing everything, he has never done anything like that without me before. I have to try not to think about it too much, and keep taking every day as it comes. Hopefully tomorrow will be a better day, I keep living for tomorrows!
Oh I really shouldn’t write journal updates at 3am when I am tired and emotional. On a better note, the fundraising is going well in Australia, the Lions Club have donated a total of $20,000 and with that donation we now have $79,000 AUD in the trust fund, thanks to the wonderful generosity of amazing people. I am hoping that we can raise at least $200,000 USD by January when our visa’s need renewing. Our fellow Aussie battler Sammy Joe is in the hospital at the moment. Tim had the opportunity of finally meeting Sammy Joe and his amazing family today, I hope that one day Dylan and I will get to meet them too. Sammy Joe is currently fundraising also to get back to the U.S for his treatment. He made it here once and I am sure with continued support they will get here again, I know his family are just as determined to get their son the care he needs as what we are.
