Doctor news

Gigi met us at the hospital this morning. I had something she has been wanting me to bring for ages. I finally got it delivered. She stayed for the doctors visit. The surgical nurses came and cleaned the picc, replacing the bandages with fresh. The nurse drew blood tests and quickly returned with the results. WBC at 0.7 which is good since the lows were clear down to .3. The goal is 5.0 , but that is a good number considering everything. Riley is not totally helpless.



Hgb is 8. Rbc is, 3.1 below range but barely 3.45 is low end. Gran is .2. Platelets are at 27, I am thrilled considering the expiration date on Monday. We think we will get out quickly today, without a transfusion for the weekend. We wait for the doctor. Its a while. When he comes he says he likes the numbers also. he wants us to go to once a week visits for Thursdays. He does his clinics on Thursdays. He says we need a platelet boost to carry us another week until next Thursday.



I ask about the reds holding that long. He says he would like to go as low as 6.5. When reds are given, sometimes the bone marrow reads that it has enough and stops producing again. He wants to push the marrow to produce, if Riley can handle the low reds. Watch for the signs and bring him in as needed. Otherwise we are due back next Thursday. With fewer transfusions it improves the case if things change in the future.



I also ask after our prescription. the doctor has given us 4 refills, but insurance wont let us pick them up until each one is finished. They are only 5 day doses. It has been completely irritating to have to go to the pharmacy over and over again. I tell the doctor I need 480 pills per prescription not 90. Riley with his need to have small pills takes 8 25 ml each time, when a normal prescription dose would be 4 100 ml. The doctor orders 1000 25 ml pills for us for our next refill. That should solve our problem.



So we wait for the platelets. They take hours to arrive. Riley is hungry and not for hospital food. I do the trek down to the ninth floor then across to the other hospital to a cafe that does real fried food. Riley is thrilled when I bring back a tray with pop, fries, and a cheese burger. All real, no fake, no bake. He shares some of the burger with me but eats everything else. The platelets finally arrive.



We hang out as the platelets go in, then the flush, then the post wait. We can leave at 2:45, missing rush hour traffic. We will be home in time for Trevor.




The teacher was sick this week and then had a family emergency, but she has dropped off work for Riley. Tomorrow I drop off his high school wish list. I am told to check parent assist in August for an early view of his schedule.