Ramblings.

This morning's CBC, complete blood count, brought great news. Simon's ANC doubled since yesterday morning. His ANC is now over 1000. (His low was 7.1.) His red blood is up slightly from yesterday, without having a transfusion, and he has held on to the platelets he received yesterday afternoon. Today he will have his day +28 bone marrow biopsy. (Technically, day +28 isn't until Thursday, but who's counting?)

The discharge word was used again today. Today marks our 37th day in the hospital. I should be ecstatic, right? Instead, I am going into full blown panic mode. (FYI: If you do your bawling in the shower, nobody will know.)

Discharge does not mean going home. It means moving into an apartment located 5 minutes from the hospital. Home is still 2.5 months away.

The hospital is a safe place. Simon's blood pressure, temperature, and oxygen levels are monitored throughout the day and night. His complete blood counts and kidney functions are checked daily. His platelets are checked twice a day. Blood transfusions are often given during the night, while we both sleep.

Discharge means the loss of those safety checks. If Simon's temperature spikes in the middle of the night, will I wake up? What about his blood pressure? Will we be making middle of the night trips to the hospital? Transfusions take up to 2 hours, plus the extra monitoring for an hour post transfusion. He has needed platelets every day and a half, and red blood every 2-3 days. What if he needs blood on the week-end? How will I even know?

In the hospital, meals are provided. Simon has no immune system. How will I be able to go to the store to buy food to feed us? I can't leave him alone, but I also can't take him out to where there are people.

Hospital days are really quite lazy. After discharge, will we be spending most of our time over at the hospital anyways? I am the one who does his dressing change on his broviac catheter every day, but the nurses do the flushing and changing of his caps.

Then there are the costs of leaving the hospital. Simon is taking 18-20 pills, twice a day. Mouth care meds are 3 time a day and nose spray is twice a day. I have lost track of how many meds he is still getting through the IV around the clock. Co-pays alone are going to run in the hundreds of dollars a month just for his meds.

The doctor told us that just about every transplant patient ends up back in the hospital at least once following transplant. Our room, for all it is, has become home. We have our things to make us comfortable. It is decorated with posters and pictures from home. When we have to return in an emergency situation, it will be to a strange room, and maybe even unknown nurses. (I shudder at THAT prospect.)

As I look ahead, the one thing guaranteed to bring tears to my eyes is the knowledge that we will be saying good-bye to the amazing people who have touched our lives during this time and entered our hearts.

Eleanor, who works in the cafeteria. She blesses me everyday when I walk through her checkout line. Ana and Dorothy, who have kept Simon's room sparkling. Most of all are the nurses. While some of our experiences with nurses have been a great source of anxiety for me, most of the nurses have been fantastic. Now that our time here is drawing to a close, we are finally getting some of the same nurses.

Tony, who brought in his Spider Man movies for Simon to watch.

Peter, otherwise known as Spider Man, who wears a different super-hero t-shirt every night. He came swinging in on his spider web one night and managed to get everything done, so Simon could be done for the night by 9! He was also Simon's nurse when Simon's ANC took its first real jump in the right direction. He won't be back on the BMT ward until next week. We might not see him again.

And then there is Heath. Heath is a float nurse, so the fact that we even met him is amazing. He earned himself a permanent place in our hearts his first night of working with Simon. It was Simon's roughest night here, and Heath handled him with such care and compassion, and managed to keep Simon's dignity in tact. When he wasn't in Simon's room that night, he was sitting right outside of it, with the monitor facing the window. He noticed the minute Simon's oxygen levels started to slip, and he was in the room getting Simon hooked up on oxygen. As a mom, I knew Simon was in very capable hands.

Heath was back on the floor a couple of nights later, but not as Simon's nurse. He did stop in and check on Simon a couple of times, just to see how he was doing. He wrote down a youtube video he wanted Simon to see. Last week, Simon had Heath for the second, and probably last time. As a float nurse, his duties are going to be more centered in the ER. We won't get to tell him good-bye.

If I don't stop now, I am going to be bawling again, so, yep, full, stinkin' blown panic.