Day 15

entry by Grandma Sally. What a night! it took me a few hours and three cups of coffee to get a bit of energy together to write this. And Lois made me. Since when do the daughter tell the mother what to do? - there should be some law against this. William's catheter tube kept on blocking up with blood clots and a protien like sediment. He got a diuretic and has to pee often but it would not come out and then he would make noises like a woman giving birth, jump of the bed and sit on the potty, ring the bell for the nurse and then unplug the monitor lines. I eventually stopped jumping out of bed and just watch him go through the routine. Then the nurses would flush the catheter and William gets relieve. It.happened on average twice every hour and he handled it like a trooper. I am so proud of my Grandson. William will get an ultrasonic scan today. Dr sees symptons that points to a possible clot in the liver or kidneys. Will keep you updated. Day 15 Part 2. Good morning everyone! "This is the day that the Lord had made and I will rejoice in it". William is off the BIPAP machine (forces air into his lungs) and for about 2 hours this morning he was without any breathing machines and maintained his own oxygen level between 92% and 96%. His heart beat is still a little high at 157 but his RESP is down to the high 20's mid 30's. The other good news is that William walked again today! Our PT team is amazing and their encouragement is just heartwarming. William’s blood work from this morning showed that his WBC have gone from 0.0 to 0.1, THE Dr’s say that this change is so small that they still consider his WBC to be zero… BUT I DON’T CARE WHAT THEY SAY, Any move in the right direction is a positive move and I am grateful for it. Overall his ANC is zero, but the good news about being at Zero is that it can only get better.. Right? Right! For the last two days William has been averaging around 600 NEGATIVE each day in his fluid! This is fantastic and FINALLY his scrotum is getting smaller and although it is still extremely large, the immense relieve of pressure is obvious! William's belly is still 72 cm but, I know that this will get smaller too! William’s fever is still on a Yo-Yo ride so a blood culture has been sent down to the lab to determine the source. My “mommy instinct” is telling me that he has strep throat. I know this because believe it or not, during the last 7 year I have become real familiar with my son’s body language, and the fact that he cannot open his mouth more than about 1 inch, gargle, or swallow are the signs that he has strep throat. He is currently getting two types of broad spectrum antibiotics so the Dr.’s have told me that the chances of him having strep throat are pretty much non-existent, never less… I am demanding that they test him. If there is one thing that I have learned through this whole ordeal it is that I will never again doubt my “mommy instinct.” I am trying to send individual thank-you e-mails to everyone that has written on our blog, so please remember to leave your e-mail address. Please be patient with me, if it takes me a long time to respond to you, it’s NOT because your message was not received or that it was not appreciated… I just have a lot of people (what a blessing) to respond too. Please keep the prayers coming. Keep on Keeping on. LiveStrong and God Bless everyone one of you! PS. William says “Hi” (Yes, he is a man of many words ;) )