Our Hospital Home

For what it is worth, room 710, on the bone marrow transplant unit, has become home. Simon was admitted to the hospital on Memorial Day, waaay back in May. Today, Simon is 30 days out from transplant. It also marks our 41st day in our new "home."

The walls are decorated with posters of Star Wars and super heroes, as well as pictures from home. On one wall, is a large map of the USA, soon to be covered with foil stars, marking all the places across this great nation where people are praying for Simon.

Earlier this week, Peter, one of our all time favorite nurses, was all excited for us. Simon is doing well and heading towards discharge. He wrote on Simon's whiteboard, "Let's get started on discharge education." I smiled, grabbed my clothes, walked down the hall, and cried in the shower. (Peter is the one in red. We call him "Spider Man.")

What is wrong with me? After 40+ days in the hospital, you'd think I'd be bolting out the door a.s.a.p! I am anxious to be home, but we are still at least 2 and a half months away from there. When we leave here, "home" will be an apartment mere block away from the hospital.

We will be close enough for our daily trips back to the hospital. Close enough for daily doses of GCSF, granulocyte-colony stimulating factor. (This is needed to boost his white blood count, so he will have minimal protection against infection or illness.) Close enough for near daily platelet transfusions. Close enough for daily checks of his blood counts. And most importantly, we will be close enough to the emergency room for the middle of the night nose bleed that won't stop, or the dreaded fever that will put him right back in the hospital.

Bone marrow kids do not achieve freedom from this place easily. The doctor told us that most of these kids end up back in here at least once. One nurse told me she can't remember a patient who didn't end up back in here. Some kids come back for a few days until a fever goes away. Some end up back here for a month.

For what it is worth, this place is home. Once we leave, it becomes a hospital once more. If we come back, we are back to being in a hospital room. If we are lucky, we would be back on the bmt unit. If the unit is full, we could even end up on a different floor, surrounded by sick kids, without all the protections the bmt unit provides. Barren hospital walls without the comforts that surround us now. If we are going to come back anyways, I'd just as soon stay put.

Then there is the ever changing criteria for being able to leave in the first place. I have heard the magic ANC number of greater than 2500, 3 days in a row, followed by a couple of days without the GCSF. I have also heard the magic number of only greater than 1500 three days in a row. Two days ago, Simon hit above 1500 for the first time. Yesterday was his second day above 1500, but he was down from the day before. I am still waiting for today's numbers.

Either way, it doesn't sound like he has met the criteria for discharge just yet, at least to my untrained way of thinking. Given these circumstances, I'll take the safety of the hospital, thank you very much.

I don't even want to think about Simon's heart. He has been dealing with elevated blood pressures, which we know because his blood pressures are monitored around the clock. It hasn't been a huge issue, but he has been medicated about once a day for the past week. His heart rate was also up yesterday. Simon has the heart rate of an athlete, which means it beats around 50-55 beats per minute. At night, it even drops down into the upper 40s. Yesterday, every time it was checked, it was more in the 100-115 range. Not fast enough for anyone else to worry, but I am wondering why the change.

NEWS FLASH: Today's ANC just in. Trending down. 1700, 1500, 1300. Still waiting for the 3 days in a row of acceptable numbers to hit.

Then we have the fungus. Somewhere in Simon's body, there is a fungus called aspergillus. It has shown up in his blood. Its numbers are increasing. Simon gets to have cat scans, echo cardiograms, intense eye exams, and an MRI of his brain. They are looking for the fungus. So far, no signs of it having set up shop in any particular place. This is a good thing, but with those numbers rising, what does that mean? He is already on some really strong anti-fungal meds.

I am not yet ready to leave the safety of home, and more importantly, Simon's numbers do not indicate that he is either.