The last time we were here, I counted the days we actually spent in hospital, (18) but for variety’s sake this time I’ll count the days to engraftment, which is usually how it works around here. Transplant day is zero, so today is Day +1.
I had a nice uneventful day at hospital, which is how we like them. We were up at the crack of dawn and starting getting cleaned up and ready for the day. Daddy dropped off breakfast and Gavin and I amused ourselves by setting up the play area and decorating the room. The walls are now liberally covered with cards and drawings. Bean is feeling crafty lately and is very into colouring and using scissors. He finishes each picture with a big flourish and an “Ok! Mama, hang. Tape.” He has yet to grasp that scissors are actually easier to use with one hand, and refuses to be shown how to use them but hacks insistently away with two. Oh well, plenty of time before kindergarten! We carefully cut out the Backyardigans cut-outs (from neighbour Jenn) and stuck them on the wall too. Add to that some funny pictures of our friends Violet and Jem, and the walls look pretty cheerful.
Pretty soon Bubby showed up and we all played and finished organizing the room. Then we had a visit from our speech therapist Caelyn, who had some fun games for Gavin to play. He hasn’t spent a great deal of time with her but always engages really well with her and enjoys having a session. She still feels that Gavin is developing normally after the setbacks he went through post-op, and was really surprised at the changes she has seen since the end of September. We will of course monitor his progress carefully but for now he is doing well.
Bean is really repeating everything these days and is very chatty. As we lay together in bed tonight, telling stories and getting ready for sleep, he chattered quietly to himself. Here is a sample: Cat. Cat. Caaaaat. Meow. Meow. Oh, I got tubeys. Tubeys in toes. Oh, hi monkey! Twinkle, twinkle. No, minnow, hot.
Tubeys are his IV lines and NG tube. He thinks it’s hilarious to pick them up with toes. I am trying not to encourage that sort of behaviour because I heard a scary story today about a broken central line. Gah! I don’t even want to contemplate that.
The physiotherapist dropped by to have a chat and discuss our options in future. Basically, she explained that our goal here is just to maintain his baseline performance, and work on improving later. Gavin essentially does his own physio by just getting out of bed, doing squats and playing with his toys, so the therapist probably won’t be working with us here, but she suggested, and I agree, that once gav is out of treatment we can begin to improve on his gross motor delays, and work on running, jumping and kicking again. We will probably have to see a private one but I’m sure we won’t have trouble finding someone who works well with him. In the meantime, Daddy has Gav doing leg-lifts and such to keep in shape.
Nothing exciting happened medically today, thankfully. No vomiting, no fevers, he’s off antibiotics for now and he’s tolerating formula okay. His counts are lower but still okay, no need for transfusions just yet. He also still wants to drink a bit of water and ordered breakfast this morning. He only had a couple of bites, but that’s a raging success on 8B. I was chatting with some of the other parents in the lounge and realized how easy we’ve had it so far. Many of the kids have not eaten, anything, for 15 days or more. They have terrible mouth and throat sores and are on morphine. Once they are off the morphine, they go through withdrawal and suffer through that. Many of them are on steroids and experience wild mood swings and roid rages. So many of them cannot maintain counts at all and get transfused several times daily. Knowing that behind all of these closed doors these private battles are being waged just breaks my heart. I know that these things may be ahead for Gavin too, but today he was laughing and silly and full of beans.
Today I dropped in to see a family who were with us in constant obs
in neurosurgery. Our Bean and their daughter were both admitted with brain tumors the same week, but have had such different journeys. It was great to see how far she has come since she left for a rehab facility. (They are in-house for a procedure) I couldn’t help flashing back to those very dark days of recovery, as we all struggled to make sense of the new terminology and terrain we were being forced to discover. We have all travelled a vast distance since then.
There is a very dim light ahead of me, I can just see it in the far distance. The light at the end of the tunnel is just up ahead, but first we get through this week, and the next, and the next.