And we are home again! Life is looking better after a night in our own bed. Daniel fell asleep in his crib, which is shoved against our bed with the front rail removed, sidecar-style. And stayed there all night. Even Alex only awoke twice. Sleeping in one's own bed after a week away is amazing. If that week was spent sleeping in a hospital bed between two babies, sleeping between one's husband and the youngest baby in a king sized bed is sheer heaven. As much as I love Daniel, it is just downright awful sleeping next to him right now because of the night sweats. Especially his head. The sweat literally rolls off of him and soaks the sheets and pillow. In the hospital, every few hours the spreading puddle of sweat would reach me and I would get up to rotate pillows, giving him a dry one and leaving the other one to dry out a bit. It was nice to have him in his own bed. I was hoping, since the worst of the heat and sweat is under his hair, that this would resolve as soon as his hair fell out. But grandma Sandi, remembering her own chemo experience, has assured us that no, it doesn't. Then the sweat just rolls down the bare scalp. Awesome.
The steroid situation keeps getting worse, as far as physical and emotional changes. He has fat-man jowls now. His shirts won't stay down over his swollen tummy, it's blue-veined skin stretched tightly and belly button popping out. His neck is almost nonexistent, just a roll between his cheeks and his shoulders, and his eyes are looking squinty as they are squeezed by his swelling face. But these are just the physical changes. His emotions have become as fragile as a baby hummingbird. The smallest disappointment has him falling apart, heartbroken. The smallest frustration has him screaming and hurling food or toys. He doesn't know what he wants, only that he wants it desperately, and life will end if he doesn't get it. When he starts eating, he cannot stop until he is beyond miserable, and oh yeah, the diarrhea stopped two days ago and not one poop since, even though he keeps straining and crying in pain over the impaction that has yet to pass. And added to this is the frustration of not being able to communicate well enough to make us understand the source of his upset. Oh, and have I mentioned that he is cutting his two year molars, in addition to a few white sores developing in his mouth, thanks to the chemo? And the open sores on his bottom that aren't even attempting to heal. So yeah. He's pretty much a ray of freaking sunshine right now.
Things will get better. We keep hearing this, and know it is true. We are seeing our first improvement in his numbers. His red cells, white cells and platelets are still hanging just above the threshold for transfusion, so really deplorable, but they are holding steady for the first time, which means that his bone marrow is starting to replace them at about the same rate as they are dying off. It will just be a long wait as it slowly starts to replace them faster than they die and slowly they climb to healthy levels. His ANC (neutrophil count, by which immunity is measured) levels went from 38 the night we were admitted, to 50, to 40, to 50, to 60, to 90 the day we we discharged. So for the first time, they have climbed consistently for several days now. Which means we aren't in the clear yet, but we have started to slowly climb out of rock bottom and are now tracking his levels back up, meaning his initial chemo-induced crash, necessary but miserable, is behind us.
Now that he is home, he is starting to occasionally crawl again. It is agonizing to watch, since he is obviously crawling through a bit of pain, his hands clenched, his arms stiff, with frequent stops to take the weight off his wrists, but it is more than he would even attempt in the hospital. Not that it was easy in the hospital, since his IV pole had to go wherever he did, and apparently having his port accessed and covered in dressing feels funny (I hope not painful) to him, because he kept his head obsessively smashed against that shoulder for seven straight days. And the whole crawling on a hospital floor just seems dirty. Even though they mop it once a day.
Another thing checked off of the to-do list- after rescheduling three times, we were finally home to take Alex to his two week checkup. Which was actually his four week checkup by the time we got it done. He's an extremely healthy, bouncing baby boy in the upper percentiles in all of his measurements, eating like a champ.
My parents came up day before yesterday, bearing food from themselves and from Aunt Barb, just in time for a 5-8" spring snowstorm to roll into Denver. They stayed with the two babies for a few hours while Bobby took the mother of his sons out for a steak dinner. We drove back to the hospital in deep enough snow we decided having them drive to Loveland for night could be a suicide mission, so they managed to procure a family sleep room in the hospital. They didn't realize the thermostat was turned down to 40 degrees, so they shivered all night, but it still beat shivering in the ditch somewhere along I25, as could have happened had they decided to brave the roads. They stayed with us in the hospital until we were discharged, Daniel having proved he could drink enough to stay hydrated on his own without IV fluids, then we all drove home, where my dad held and played with Daniel and my mom attacked every surface we touch on a daily basis with bleach, in an attempt to de-germ the house to avoid another bacteria-induced hospital stay. They spent today holding babies, cleaning, and canning a canner full of beef roast for our pantry, then babysat Daniel while B went to work and I took Alex to his appointment, since the waiting room of a pediatric clinic is a veritable gauntlet of potential viruses and infections for Daniel right now. Before they left, Dad mowed the yard. And then, reluctantly leaving their grandson in my care, sure they should be staying to keep helping out, they hit the road for home.
Since they left, we have been sitting here keeping things low key and conflict averse, and are going on two whole hours with no meltdowns. At the moment, I am typing one-handed while the other arm is encircling a sweaty little boy, his head soaking my shoulder as he watches Thomas and Friends. He was watching Curious George 2 (the movie), which I don't mind so much. It has a nice happy soundtrack and cute narrative. But Thomas and Friends episodes are so not made with adults in mind. Those overly eager-to-please trains are freaking creepy. Speaking of kid's shows, an accidentally watched episode of Caillou had me wondering what that kid's deal is...until it dawned on me. A fat, bald, incredibly whiny kid? Hello! I know a kid on chemo when I see one!
As far as our own mental state, it's okay. It's weird, though...I feel like i have hit a state of baseline where I can bulldoze every new thing without it sending me over the edge. Falling apart is just too time and energy consuming, when both could be put to better use. It's happiness I suddenly can't manage without unbidden and unwanted tears. There was a Mother's day flash mob at the hospital on Saturday. After the choreographed bit ended, there was just a general dance party. I discovered this happening as I was going to the cafeteria, having escaped the room briefly. After a few minutes of watching, I asked myself why I was on the sideline. When the opportunity presents itself to dance, you dance. Except...being in the middle of a crowd of happy, dancing people...maybe it was just the addition of one more thing to process. I don't know. But suddenly the waterworks wanted to start. I bounced and clapped my way out of the crowd, grabbed a salad, and scurried back up to the room where things were normal and familiar. The same thing happened when we went out for dinner later that night, when I left the hospital for the first time in seven days. It was something we would have done before our sky fell. And that made it overwhelming. Plus, having been attached to two little boys 24/7 for the last week in a tiny room, in isolation, being apart from them I felt like I was suddenly missing a limb. And then my touchscreen phone somehow opened a picture of Daniel from last year's ski trip, a happy, healthy little boy, and for a second I forgot where we were and why we were there, and that the picture wasn't current. 
And then the tears wanted to start up again. Crying when you don't want to is so annoying.
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