Don't mean to gross folks out with bloody diapers, but like I said before, some of the less desirable pics are for moms who might find themselves in my shoes one day. And for those of you who want a realistic picture of what our lives are like day to day. Anyhow...
For the first time ever, George and I both went to work while Clayton was in the hospital and so we had my mom spend the day with him. The only reason we did that was because we were comfortable with the situation. Yes, believe it or not, at the time we were ok with the status report.
Even Thursday afternoon as I was in the back seat of the car trying to catch the blood pouring from his nose as we sped to the hospital, the only the bothering me was how long it was going to take the hospital to get his platelets. I knew why he was bleeding and I knew what the solution was, the problem is dealing with the crap (otherwise known as paperwork and stupid policies and procedures) that stood between us and the solution. We were at the hospital for more that five hours Thursday before he got his platelets.
Friday my mom was texting me pictures and updates so I could micro manage the situation from work and the first picture was the first one I got. Again, no need to freak out, my baby just needs more platelets. But guess what? Between 7 am and 8 am all of the doctors and nurses are in "report" so for a full hour there is not one person that can help my child get platelets...After they finally write the order, a few hours pass and no platelets. After instructing my mother to stay on top of the platelet situation and question them if it appears to be taking too long, she is finally told that there was a problem with a fax...back.it.up...another faulty fax? Seriously? What is it with this place? Why are chemo orders and orders for blood products able to get screwed up by a fax? These are important things and should not be put in the unreliable "hands" of a fax.
But eventually he got his platelets and his diapers progressively got better throughout the day. Instead the problem started to become the clots. Now that his platelets were up, his blood was clotting and what was in his bladder still had to pass through. You see where this is headed? So we started medicating him to help make passing the clots less uncomfortable.
The good news is that today (Saturday) he has been more like himself then any other time since getting extubated after surgery. Laughing and smiling. It has been nice to see the light at the end of the tunnel again. This hospitalization is the end to the first book in what will hopefully be nothing more that a trilogy (chemo, radiation and 3f8, finally monitoring/remission) in our fight against cancer. I have to keep telling myself it will be over soon...
He is also still drinking milk which is good. He has lost about five pounds though since before surgery. And when he has been taking in calories, he has not always been able to keep them down. So while we are here we had them put him on IV nutrition to help him get his strength and energy back. Since the cultures have all been negative and he has not had another fever, the only thing we are waiting on to get out of here are for his counts to come up so that his ANC is at least 500. Yesterday and today it was like 10. So we have a few days...
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