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Dear everyone,
Travis was released (I always first write "we were released", then erase. Hmmm) from the hospital Monday evening (3/9), and we drove home through a blinding snowstorm, arriving with 2 kids, 2 adults and 2 cars intact at 11:30 pm. We'd been so optimistic about leaving, that we'd packed up the hospital room and checked out of the RMH, not seeing any sign of the storm that had been talked about all day. Surprise-- it came JUST as we were leaving. A white knuckler, to be sure. But we arrived safe, TIRED and thrilled to be home again after a 10-day stay that we'd naively thought would be "an overnight". HA -- live and learn.
We go back up again on Monday, for both clinic (labs and checking GVH status) as well as another thorough eye exam by the specialists. The look-see Monday was a bit too soon for them to tell if the Foscarnet has arrested the viral infection. So next Monday, we and they are hopeful that the comparison photos will show improvement. They described this as the vessels behind the retina are damaged (permanently), and the vessels through the retina are infected as well. So far, we are unbelievably lucky that Travis' eyesight has not diminished, so it seems that this was caught early. We're hoping the increased Foscarnet beats the crap out of the CMV.
An aside about the trip to MKE. Travis' IV meds finished DURING the drive to MKE, so there we were, off in God Knows Where, USA, in some grocery store parking lot in the car, with me bent over the front seat, locking off 2 pumps, flushing Travis' 2 lines with 2 syringes each. All the while, Travis and I were chatting as if this is completely ordinary. It struck me how far we've come in being able to take so many of these procedures in stride. It was truly "no big deal". Very weird to think about. (Now if I'd only been able to find the freeway entrance again!)
The other update is that someone had a visitor on the HOT Unit who apparently came down with chicken pox! You guessed it, that meant that all the patients on the unit had to get the two leg-muscle antibody shots! Bam, bam, bam -- one thing after another. Travis' anxiety about this was very high, but he sailed through the shots surprisingly well (thank you, EMLA cream).
So we're home in full force. Amazingly, Joe coaxed both boys outside yesterday for 2 hours in the snow -- building a snowman and sledding! I'm convinced that this activity is what's elevating Travis' counts! Anyway, he had a ball, and had great energy for that. Was pretty tired and red-cheeked (and big-cheeked, thank you steroids) after that.
In all this hullaballoo, Joe and I realized we'd forgotten to advance schedule Spencer's 5 year well-checkup. So that was today. Poor sweetheart. He is by personality, much more "passionate", "spirited" (you get the idea), and with the trauma he's been witnessing with his brother, it's no wonder he FREAKED out at the idea of going to the doctor. Somehow, Joe cajoled him into going (while I was with Travis in MKE). Picture this, it took 3 people to body-lock Spencer, during his shrieking and fighting, to give him his 4 immunization shots. Spencer has never had a high pain tolerance, but this one was clearly more emotionally traumatic to him as much as anything. I knew right away how the appointment went, as Joe walked in the house with blood spattered all over his shirt! But, Spencer is amazingly resilient. Mario Party Nintendo took his cares away within moments of being home. He's sporting 3 bandaids on one arm (pretty funny, actually), and one on the other. He's very proud to display his wounds. Many hugs later, he is fine and back to his sweet, energetic, funny self. (As I'm reading a kids mystery to him: "Mom, read that part again, but I like it when you read with more EMOTION!" Yes, he's 5. These things pop out of his mouth all day. He's an absolute hoot.) I'll never take a "great checkup" for granted again. Thank God Spencer's in excellent health.
So, on to life at home. Big news here. I realized these last few weeks that it's felt like I'd dug in my heels, stretched out my arms, and held off a freight train for 5 months. Then, in January, going back to work and life becoming a bit more "stable", I guess I lifted my heels and dropped my arms, as I got run over by the freight train. It's been a very difficult month, resulting in a very important decision for me. I AM NOW ON A LEAVE OF ABSENCE FROM WORK, for an unspecified, as of yet, duration. With all these ups and downs and surprises and complications, it's time (hellooo -- better late than never) for healing and family focus. I truly feel like I lost 800 lbs. Immediately, with this decision. And my company is INCREDIBLY supportive of this decision. They've assured me I'm more than welcome back when I'm ready. One word summarizes this change - WHEW.
Schedules with Travis are still hectic, between doctor visits and home- administered meds. The nightly IV hydration and 3x a day IV Foscarnet keeps us especially busy. And the almost hourly trips to the bathroom with Travis during the night (his IV pumps and fluids are in a backpack that weighs about 10 lbs.) It wrenches my heart to see this sleepy little boy hefting (trying, anyway -- he can't do it alone) this big pack, unwinding the lines / tubes, going to the bathroom and then, always diligently washing his hands thoroughly afterward, up to 6 times a night sometimes. No wonder we're all tired.
We'll know more, especially about Travis' eyes, on Monday. In the meantime, focused (rather than fractured) healing for us all. Whew.
Thank you for your love and support.
Melanie, Joe, Travis and Spencer