Why We are Here {day 20}

Friday afternoon and evening were amazing. Sam spent many hours with his friend Jake, while I had the delicious pleasure of grown-up conversation with my friend (Jake's mom), Kimberly. Jake had a bone marrow transplant over 200 days ago and he's doing great. In fact, so great that he had his central line removed today! Hooray for Jake and his whole family. What an incredible milestone. You might remember that Jake was at our bell-ringing ceremony last January and I said "soon by you" -- here they are, so happy to see him healed.

 
About 1:00am last night (Friday into Saturday), the nurse woke me up to let me know that Sam had spiked a fever -- 102.8. She had, as was protocol, alerted the resident on call. When he came in a few moments later, there was an immense concern about his blood pressure. Not only was he feverish, but his blood pressure was quite low, and they checked and rechecked, using a manual machine in addition to the automated one that is usually used.

I was, you can imagine, wide awake.

But Sam was too. We turned on the lights so the doctor and nurses could work better, and Sam was...well...chipper. He cracked a few jokes. He answered questions. He gave us little smiles. He even corrected me when I said something about the time. "It's one in the morning, Sam," I said. "No, mom, it's actually 1:25am," he replied. Right.

I sat on the end of his bed and watched as the room filled up with nurses as they pumped Sam with some rapid fluids to get his blood pressure to rise. I watched the resident check and recheck his BP and I learned quite a bit about what goes into blood pressure numbers and what we want and don't want.

And I heard the letters ICU. A lot.

We have a saying in our family: "They don't put FINE people in the ICU." I told the doctor that I'd prefer that Sam be "just fine," and therefore not over there (it's on the same floor, the opposite wing). He agreed...and while we were worried for quite a few hours, and even had a visit from two ICU staff people to do an assessment of his blood pressure, we stayed put on the HOT Unit. (While ICU stays are actually common for HOT unit patients, we are so extremely grateful that we've never needed that kind of care for Sam.)

Finally, after what I believe was about 1500mL of saline pushed into Sam at a pretty rapid pace, his blood pressure began to stabilize. Labs were drawn, cultures taken, urine samples sent, antibiotics added to the cocktail he's already on. (Now he's on 3 broad-spectrum antibiotics, if you're keeping score at home.) At about 3:45am, we started getting consistently normal readings. And he lost patience with us as he started to feel better and rolled over and went to sleep. I waited for a few more "normal" readings (taken every 15 minutes at that point) and then I, too, went to sleep.

The staff were calm and efficient. They were remarkable in their ability to be calming and purposeful in their work. Truthfully, I wasn't even totally sure of the implications but I knew that this had the potential to be Very Bad. I just....prayed. I couldn't help but think of a prayer that is said only in the evening...

Hashkiveinu Adonai Eloheinu l'shalom....v'hamideinu malkeinu l'chayim.
Help us, O God, to lie down in peace....and help us to rise to life.

Everything bad seems worse at night. Awakened from sleep, I was so comforted by the nurses and doctors who don't sleep. Who are fully awake and present in their work when I can only find it within myself to sit and breathe and pray.

The morning was a tad rough. Sam was super grumpy and tired, and didn't really come out of his sleep-deprived-foggy-funk until at least 10am, when we watched James and the Giant Peach while eating a nectarine. The rest of the day was a little sleepy. Both of us napped. The nurses and doctors were extra attentive to his temperature and blood pressure...and we kept extra fluids running all day.

Morning....

This is why we are here. His immune system is totally wiped out. Fevers are expected but always a source of concern. Infections are a worry. Fungal infections, skin infections, line infections, mouth infections....heck, you name it, it could be a source of infection. We just put our trust and faith in the skill of our doctors, in their vast experience that helps them not to say "wait and see" but to act as fast as they can in the best ways they know how. There are no trips to the emergency room because we are right here, with attentive and aware and incredibly fine medical care at our fingertips. And this is why we are here.

And so we wait. More days of zero counts are ahead. Keep us in your prayers....