I thought I would start tonight’s update by telling you all a bit more about Jack, so that all of you who are rooting for him can get to know him a little better. During my twin pregnancy, the boys were positioned roughly side by side, and head down, so it was somewhat possible to tell who it was that was moving around in there. Baby A, who later became known as Jack, was on my right. He was always the most vigorous, intense kicker by far. He sometimes made us wonder if Baby B (Sam) was in there at all. I keep telling Jack now that he’s my strong Baby A, and to keep on kicking.
He’s also stubborn as nails. Jack and I have spent countless night time hours locked in a battle of wills as I have tried to convince him to sleep. That child never went down for a nap or for bedtime easy and I don’t believe he’ll go down easy now, either.
The other thing that you need to know about Jack is that he loves to bounce- in his bouncer, especially- but also to be danced, swung, tossed into the air or bounced on one’s lap… pretty much anything that allows him to feel the force of gravity. He revels in it. The saddest part of all of this has been watching Jack lose the ability to enjoy those things that he had loved so much.
With all of these things in mind, we decided to give Jack a new moniker –thanks to a brilliant line in a text message from our friends Laurie and Andrew. Like the thru-hikers on the Appalachian Trail adopting nicknames until the hike is finished, I think it’s appropriate that Jack have a special name while he is on his long and difficult journey. We’re calling him Bounce Back Jack- not just because we need to believe he will bounce back from his illness, but because we want more than anything to see him get back to bouncing again soon.
Now, on to the medical update for today:
Jack returned to us from surgery last night with a great report. Dr. Pyett performed a third ventriculostomy to allow the cerebral-spinal fluid to flow better within the brain and to treat the excess fluid buildup (called hydrocephalus), though we will not know if this procedure was fully successful for up to about three months. They also placed a drain in Jack’s head for excess cerebral-spinal fluid. The biopsy was completed without any hemorrhage (hooray!)
Every day has its new drama, and today’s was that Jack developed a tremor along the right side of his body. Doctors were concerned that Jack may be having small seizures as a result of either the surgery or the tumor itself. Thankfully, an EKG and an examination by a pediatric neurologist revealed that these tremors are not seizures, but rather simply the result of the less-than-optimal situation within Jack’s brain. (Whew! – the problems we already have on our plate are more than enough, thanks.)
Jack also had another surgery today. This time, the surgeon placed a Broviac catheter (aka the “main line”) into Jack’s body near his heart, with an exit point across his chest. Two small leads exit the body at this site, and will be used to make drawing labs more simple, and to facilitate the delivery of the chemotherapy to Jack. I can tell you I’m mighty nervous about keeping the site clean and safely secured from a curious baby (not to mention his equally curious and very strong brother!) The surgery was a success, so IVs can now be hooked up to the main line, and the peripheral IVs were removed from his arms.
As I write this, Jack is lying in his crib in the PICU, where I will be spending the night with him. He is still on a ventilator and is sedated. He’s mostly sleeping, though he occasionally opens an eye and wiggles an arm or his legs. Tonight’s main objective will be to slowly wean Jack off of the ventilator by requiring him to take more breaths on his own overnight. This will allow the doctors to remove the breathing tube tomorrow. I have a deep worry about this plan… one of his symptoms is that Jack has difficulty swallowing (first on his bottles, then food, and also –as of yesterday- his saliva). I’m glad we are in the PICU so that if he becomes symptomatic again, the staff can instantly intervene, but I really, really don’t want a choking episode.
After that, the plan is to stay here in the PICU and we await the results of the biopsy, which should be in by Monday. As Dr. Walter, the oncologist, put it to us, what we discover via the pathology report is probably going to be bad, but there is a spectrum of “bad”. So, I’ll ask all of you to send up a wish that Jack’s tumor will end up being the not-so-bad kind of bad.
But whatever we discover, I’m sure that Bounce Back Jack is going to keep on kicking on his journey toward recovery. Thanks, everyone, for joining us on this journey, for pulling for Jack, and for getting to know our family a bit better through this blog.