Whoooo…. What a day. Yesterday, Dr. Piatt decided to close off Jack’s drain to see if Jack could regulate his own intercranial pressure. Throughout the night the ICP alarms rang almost constantly, so the nurses repeatedly let off fluid. By the morning Jack’s heart rate had dipped, a sign of reemerging hydrocephalus. Dr. Piatt informed us that the drain would be reopened, and Jack would be scheduled to receive a shunt on Monday. This was the first bad news of the day, but not the last.
Next, one of Jack’s legs grew icy cold, though the rest of his body was warm. Fearing another blood clot, an ultrasound of the limb was ordered. While it didn’t show a clot, it did show some reduced flow in the leg. Doctors are monitoring this new development.
As you all know, the drain in Jack’s head remains the scariest thing in Jack’s PICU room for John and me. Remember when you were little, and you found something in your darkened room to be afraid of? Maybe it was the way a sweatshirt lay draped on a closet doorknob which suddenly appeared sinister, or the recurring thought that there was a terrible creature outside the window, peering in. Your response is to lie still –as still as possible– eyes fixed on the perceived threat. John and I have sat in Jack’s room regarding the drain with that same kind of fear-and-adrenaline fueled intensity these past few weeks. Therefore, I suppose that it’s not surprising that we have been the first ones to discover every problem with the drain thus far. We discovered the first site leak, and another minor leak early this morning. We discovered the dehydration that resulted in the sunken fontanelle. And today was no different, just scarier.
We had just finished talking to Keili, a wonderful resident in the PICU who has been helping to coordinate Jack’s care since day one. John walked over to Jack and said, “Oh my God, look at his head!” The fontanelle was seriously sunken yet again. I ran over and felt all around his head on the bed sheets. They were soaked. The drain had dumped (we later learned) 60-70ml of CSF in less than 45 minutes. It usually takes Jack about seven hours to lose that amount.
Doctors pushed fluids into him to replace what was lost. Jack remained responsive, but his heart rate dipped yet again. Through all of this, doctors assured us that he was stable enough to undergo his scheduled surgeries. I’m afraid it was not a strong time for me. I really started feeling like I was in a war zone. So much seems to keep coming at us, and the security we had thought we had earned, six days post-op, is illusory.
Thankfully, both surgeries went fine. Jack is now the proud owner of a secure airway thanks to his trach and a small “button” type GI tube, which will have its inaugural meal tomorrow (if all goes well). There had been tubes down both his nostrils and a large tube in his mouth, as well as swaths of tape all over the place, but now he is free of all of that. Just having the chance to see his face again makes everything seem better, somehow. It feels like the day is ending just a little bit brighter than it started; whether that is an illusion or not, no one can say.