Day after

I am not sure I even remember the 3:00am blood draw. I was so tired after yesterday's marathon. My lower back hurt going to bed. I can't imagine how my friends feel. I like projects and the aches that go with them. They worked with me because they wanted to help me in this difficult time. But I know not everyone likes to fling boards and paint brushes. I personally find it therapeutic and satisfying.

Tom told me the Hematologist doctor stopped by again, stressing that he might have given us the wrong impression about how sterile the house needed to be, when he heard I was going to gut Riley's room. He hasn't seen my house on a normal day, as my friends will attest (prior to all this cleaning help recently). Tom told him I have been wanting to tackle this project for a while and not to worry. I think Tom also felt it needed to be done or he would not have given me the time and opportunity to get it done.

When the Hematology doctor came on rounds, he asked how the remodel went. I told him it was all done. It is except for a few details. He told me he wanted to hire me for his home. I told him I was a tough task master. Dornbechers really has personable staff. Tom even knows which one I think of as the cute doctor. He said that doctor reminds him of Dr. Carter in ER.

Last night my sister showed me a web sight of some friends. They looked so old, with grey hair and age. The problem was they were close to our age. Middle age used to be so far away, now we are there. I swear I still feel 23, well, maybe 33. 23 was a good year, so was 33. 23 we were out of college with good jobs and money to burn and cheap rent. 33 I had my babies and got to play all day.

Riley loved the vanilla yogurt I order for him to take with his pills. They go down without a hitch, just a little ribbing from the nurse. The doctors come round and tell us he needs to gain weight. The nutritionist brings in the fixings for PB and J so Riley can make his own the way he likes it.

Tom arrives at the hospital. He is shaven, smells great and looks spiffy in a clean pressed dress shirt. He is refreshed, even though Trevor missed the bus this morning at 7:00 am and Tom yelled at him that he should ride his bike. Tom drove Trevor to school. He then went back to bed for a while.

The school calls. Trevor has had an accident in PE. Someone, while they were playing with the floor scooters, hit Trevor in the knee, hard, right in his old knee injury from football. He is in pain and in the nurses station. They wont give him any Tylenol for the pain, rules. Tom and I look at each other and agree I'll go check it out.

It will give me the opportunity I need to finish cleaning up after yesterday, that old silver lining. I get to the school and after several conversations, get Trevor in a wheel chair. We clean his locker and head home. I will check with Tom to see which of us is spending the night at the hospital tonight.

He is planning on going back to work next week, for at least a few days. This is such a long term illness, we are beginning to be less freaked out, and just take things as they come. I am becoming more organized and calmer in some ways. My rantings at Trevor are shorter and we make up faster these days. He is trying much harder at school, either that or the school, because of what is going on at home is being incredibly accommodating, generous, and helpful, and supportive of Trevor, and Riley for that matter.

Riley delayed red cells again today. The hospital is planning to discharge him on Sunday morning. Hospital time, it will more likely be about 2:00 pm. But the Doctor said that they will give him red cells or whole blood either tomorrow or Saturday to boost him up before discharging him. Then Tuesday he has blood drawn just to check the numbers and Thursday we go back to an all day at Dornbechers in the out patient clinic for a battery of tests and see if there are any indications of anything conclusive. We are not to anticipate anything at all for a month at least. We are told it will probably be 3 months before there is any indication of anything.
The indication will be if platelets hold on their own without transfusion for a definitive amount of time.

I have not canceled our summer trip yet. Washington DC/ New York with Aunt J. I can hope to myself for a little while longer that we will still be going. I told a friend we could get a gas mask for Riley so he can fly and hang out in a crowd. I said we would probably get followed around by secret service in DC wondering why Riley is wearing a gas mask on the Mall.

Trevor meanwhile has crawled into my bed to read. I sure hope he can go to school tomorrow.
I wonder who is getting to spend the night at the hospital tonight. Today I am glad I only have two.