Too smoothly….

Things were going too smoothly, no bumps. Ethan’s had a fever for the past 3 to 4 days. It’s not unusual for fevers to come when his blood counts are so low. Upon getting a fever, they do blood cultures daily, to see what bacteria grows from them. Yesterday we found out that “grain negative rods” grew out of his culture from the other day. This meant some sort of infection, but they didn’t have specifics. They modified his antibiotics a little: added two antibiotics to his daily regimen, and removed one that he had been taking.

What it did confirm is that they wanted and needed to remove his central line (his IV in his chest, that is he receives most meds through, all blood draws through, etc.). Whatever bacteria may be in Ethan, they don’t want it harboring/growing on his central line and causing a bigger infection. Ethan’s oncology team wanted to remove it today in the OR. So, Ethan fasted all day, waiting anxiously for the OR, not wanting them to remove his central line. He overheard what exactly that meant…it means a peripheral IV in his hand, which he hates. He knows exactly what’s going on, and overhears everything. Knowing that he understands almost everything the doctors say, I try and tell him whatever I learn, as soon as I learn of it, knowing that he will eventually hear someone talking about it.

While we waited for more info on the surgery, we wanted to get out of the room. Grandma, Mommy and Ethan all needed to get out. Grandma slept over, with Mommy and Ethan last night, and we didn’t sleep too well. We were tired and a little sick of being inside, and it looked beautiful out. So we got Ethan unhooked for a short period of time and headed out to the garden. He was too tired to walk, so we put him in a cart, padded with tons of bedding and pillows and headed out. It was gorgeous. We did laps around the garden. I put my sunglasses on Ethan, and shielded his body from the sun with blankets and such. He fell asleep within 10 minutes of walking around. Grandma and Mommy enjoyed the flowers, taking time to stop and literally smell the roses, all the different varieties. They were beautiful. Even the soil smelled wonderfully earthy and aromatic. I took so many deep breaths, soaking up the air, and the sun, not knowing when I’d get it again. After an hour, we headed back up, as Ethan’s nurse told us to come back in 30 minutes, and we had gone well over that. He needed IV fluids and platelets to prep him for the OR. Back we went, to our climate controlled room.

Although Ethan’s oncology team wanted the central line to be removed today, that requires the cooperation of the OR / surgical team, and that wasn’t happening. It being Sunday and all, they are minimally staffed, and this wasn’t a big enough emergency for them. This could wait until tomorrow, and so the oncology team had to go along with their decision…bullies. The OR team didn’t care that Ethan had fasted all day, from 6 am, no food, no drinks.

Shortly after that decision, Ethan complained of a pain/cramp in his chest and trouble breathing. He’s been watching quite a bit of hospital TV, which has many asthma shows, and he’s learning about asthma. At one point, he was really having a shortness of breath, which we thought was partly due to the anxiety of the surgery, and he shouted out, “I can’t breathe, I have asthma!”. I had to laugh, which was completely inappropriate, but it was too funny. This pain/cramp did cause me great concern, so I told the nurse, who told the doctor, who immediately ordered a chest x-ray, and some oxycodone for the pain. The Oxycodone makes Ethan a new man, cheery, no pain, all better…Down to radiology we go.

Ethan does great, x-rays come out clear, back to the room. A wonderful friend unexpectedly stops by to bring us dinner from Border Cafe. What a pleasant surprise and a nice treat…Dinner around here is not eventful, fun or delicious, and this was all three! Thank you Jenn and Alex! Grandma and Mommy enjoyed quesadillas, and ate too much. Grandma left later in the evening to go back to the house and get ready for a week with Emma and Eliot, who were on their way home with Daddy from NY.

At 8:00 p.m., the resident came in to report to me the findings of the x-ray…pneumonia. A small amount of pneumonia seems to be present in the bottom of Ethan’s right lung. She takes the time to show me the x-ray on the computer and the area they are concerned with. She’s very helpful in explaining everything and answering all questions. It’s not uncommon for this to occur. It’s nothing we did or didn’t do. Ethan’s body is prone to this when counts are so low. The goal is to get this cleared up as quick as possible, trying not to interrupt transplant plans. They want to do surgery tonight. Stop his feeds, he has to fast now. They don’t have a time, but they’ll be back to let me know when.

30 minutes later…surgery won’t be tonight, but at 6:30 a.m. That’s actually good. Time for Ethan’s stomach to empty, and for us to sleep.

The attending physician came in at 9:15 pm and reassured me that pulling his central line is the right thing to do, and that this is not uncommon for this type of infection to occur. They’ll also want a CT Scan of Ethan’s lungs tomorrow or the next day, to better define the type of pneumonia: fungal or bacteria (bacterial tends to be easier to clear up). Their goal now is to use the antibiotics to clear up the infection. And then for Ethan’s counts to come back up, and get over to transplant. We’re not sure how this impacts transplant, we just have to wait and see how quickly he recovers from this.

And, the anesthesiologist just came in at 10:00 pm, to review tomorrow’s surgery and risks, and for me to sign the consent form. They won’t use a breathing tube during the procedure, as it would “stir up” the pneumonia. The general anesthesia puts Ethan at risk for pulmonary breathing problems, as the pneumonia is present. I will ask the anesthesiologist at the surgery tomorrow, if they think they could get by with conscious sedation for the procedure, to avoid the pulmonary risks. The conscious sedation worked so well with Ethan in his bone marrow procedures, that I would be willing to pose the question, if they thought it would be a tolerable procedure.

I say goodnight, and I hope to have great news come tomorrow…and the next day…and the day after that.

I hope for a seamless surgery for my Superhero…
I hope for Ethan’s pneumonia to clear up quick…
I hope for Ethan’s counts to come up soon…
I hope for Ethan to tolerate his IV on his hand(s)…
I hope for transplant to continue as planned…
Keep hoping, keep praying…

I think I’m going to try and sleep now before another person walks through the door…Good night…