Monday, October 31, 2016
Rowan has now spent 7 different Halloweens in the hospital, and this is his second one spent in an intensive care unit. There have been lots of Thanksgivings, Easters, Christmas's and birthdays too, so we are pretty good at handling holidays in the hospital. Today we did our best to make the best of yet another one, one that is by far occurring with Rowan in the worst condition he's ever been in. But we had lots of help from others, trying to help us enjoy it, or at least make some memories.
First of all, two of his night nurses from upstairs (the Cancer Care/BMT Unit that he had been on before coming to the PICU) showed up early this morning with a sweet card that a bunch of them had signed overnight. After they all signed it, they realized that maybe the writing would be too small for him to read in his current state, so one of them actually took the time to re-write each and every one of the nurses notes in large colorful writing on separate pieces of paper! So thoughtful. I can't wait to let Rowan read them all, one by one over the next few days. Thank you Forest 8 Cancer Care Unit! We love and miss you all and can't wait to get back up there with you once Rowan is ready.
Next, Rowan's day nurse for today showed up with an animated bowl of candy, so people who came to Rowan's room could trick or treat, and she made sure there were some skittles, so we could save some for when Rowan gets better and is able to eat again. The skeleton's eyes lit up and his head bent down, and he growled whenever someone took a piece of candy from the bowl. She thought he would like the animation, because even if he couldn't hear the sound it made, he could at least watch the lights and motion. So sweet of her!
Brian, Zoe, Ian and Grandma Judy showed up right after that and spent their last two hours here before heading to the airport. Zoe tried to entertain Rowan by drawing some of the characters from Cloudy with a chance of Meatballs 2, while it was on the tv. Rowan wasn't super alert this morning, but everybody at least got their "goodbye for now" hugs. We will miss them greatly!
Rowan originally had plans to dress up for Halloween with his friend Sam, who transplanted the day before his first transplant. She has been out for a while now, but she came back to visit him again today. She brought him a bag of Smarties, one of his favorite candies. She could only stand and wave from the door, but it was still so good for him to see her... and he waved at her! She wrote a note for him on his white board too, and had one of his sweatshirts on again too...such a sweetheart.
The very first BMT fellow on Rowan's case, who led daily rounds for the first 4-5 weeks we were here, stopped by to bring him a bag of skittles (another favorite of his). So sweet that she remembered him still, even though she has been on a different team for months now.
The best part of the day, was when we got Rowan out of the bed. It was hard to do with all the lines and pumps and the dialysis machine, but we did it. You can see from his face that he was in a lot of pain, but eventually he rested into my arms and stayed there comfortably for 10 minutes. That is the first time he has been upright or out of a bed for 16 days. As difficult as it was (it took 5 people), it was so worth it. He needed...but I needed it more. Brian held up his white board once we got Rowan onto my lap and it said "Mommy Love?" to which Rowan nodded his head.
Unfortunately, other than these precious moments above, Rowan spent the rest of the day, either asleep or crying out in pain. He is battling a rash, severe mucositis from his mouth to his bottom, kidney and bladder issues, and ulcerations on his skin from blisters that have popped. His pain pump wasn't enough to touch any of it today. It was heart breaking.
So, while he didn't exactly get to enjoy Halloween yet, we still wanted him to participate somehow...or at least be able to look back and see that he did. While he rested this evening for a bit, I "dressed him up" in his costume...
Meet Dobby, the house elf from Harry Potter!
(we did have to improvise a little with a hospital sock:)
As planned, his friend Sam was a Pygmy Puff (also from Harry Potter), and made sure to text me a picture tonight so I could show Rowan.
And our friends Lance and Ginger, who are dog sitting this weekend while everyone was up here in Seattle, sent us these awesome pictures of Max, dressed up as none other than Hercules from Sand Lot! AMAZING!!! We love you guys, and we miss you Mr. Maxwell trousers Joy Navidad!
Sunday, October 30, 2016
Well, today marks 100 consecutive days in the hospital. It's hard to believe really. And hard to swallow when we still don't have a graft in yet. We are day +12 from the second transplant though, so those counts will hopefully be coming in any day now. Please Lord...let them come in sooner rather than later.
It's been a tough 2 weeks now, down here in the PICU, and last night was one of the roughest nights yet. Rowan started showing signs of what they call "ICU psychosis" or "ICU delirium". He was so agitated, and out of control one moment, and then out the next, but could only sleep for about 5 minutes at a time. Two nights ago he pulled an iv out in his sleep, took off his central line dressing, and picked at his shunt scab relentlessly. Last night he thrashed around the bed, and repeatedly pulled of his monitors, pulled off his blood pressure cuff, and dressings. He went through 3 different BiPAP masks, pillow, high flow nasal canula before we could find one he would keep on last night.
Today, he does not want to open his eyes at all. He moans and cries if we try to make him sit up or even look at us. He seems to read what we write on the white board, but just closes his eyes immediately afterward. It is beyond heartbreaking. Who can blame him for being tired of all this, who can blame him for feeling like he is going crazy?
There is really nothing we can do though, but love on him, try to console him, and wait. The waiting is the hardest part. We are waiting for counts, waiting for his hearing to return, waiting for him to fully wake up, waiting for our boy to come all the way back to us.
Having the family together has helped, but it is mostly us that is has helped. Zoe and Ian, and Grandma Judy, have both been great. They have tried so hard to cheer Rowan up, but been understanding when he just doesn't respond or isn't up for it. They have found ways to pass the time as well. Both of them (actually all 3 of them) are so artistic. Ian has been working on an art project for school, using the hospital window as a light box for tracing his drawing.
Zoe made the most adorable carved (artificial) pumpkin for Rowan's room. It's Barry from Cloudy with a Chance of Meatballs 2, and it's perfect. She carved and colored it by hand and Ian made the strawberry leaves.
I will be so sad to have them leave tomorrow. Especially since they haven't been able to truly play with their brother, like we all would have liked. But, you do what you have to do. You make the best of it. You put one foot in front of the other. You take it day by day, and even hour by hour. You carve fake pumpkins, you draw, you hug, and you pray for things to get better.