Friday, August 19, 2016; 9:00pm: Today was an incredibly emotional day. Christopher has some very minor blips in his short term memory. So he was absolutely certain we hadn't done his CT and berated us sharply for leaving before it was done. Later, I told him I was leaving to talk to one of his care team members. He completely forgot, and a nurse came to get me because his pulse and bp had skyrocketed from his rage at my absence. He slept between all his neuro exams until 10:30, and then spent the rest of the day jumping from one anxiety attack to the next. Finally, Dr. Ahn rescued him by deciding PICU was preventing solid sleep and comfort free from tubes and cords and released his bp constrictions. By dinner time, Christopher was ensconced in 10 South on the regular peds floor.
He is much stronger today, and his short walks to the bathroom are already much stronger than his first walk this morning. But it is all just.so.very.hard. For me as much as for him. For tonight, we will try for a semi-solid night's sleep.
Friday, August 19, 2016; 1:00pm: The train is stopped indefinitely. Christopher was maintaining his MAP 75 level, but just as they were ready to turn off nicardipine, MAPs went to 85. He is on a much lower dose than the max he's been on, but the expectation is that he has at last another night in the PICU. The expectation is that he'll then go to the regular floor until Monday. Christopher's vision is still blurry up close and doubles if he focuses to the left. His visual tracking is slow, as is his ability to focus on a conversation. Tamargo feels this is an artifact of brain swelling and it will resolve. Rehab medicine anticipates 3-4 months for most of Christopher's gains in the left side recovery, but full recovery will take 6-12 months. Because he only has one IV now, all non bp meds are being given by mouth.
Physical Therapy and Occupational Therapy have both come to work with Christopher today. Walking 40 feet was the equivalent of running a marathon for him today, but he did do it. He even got a bonus 12 feet using the restroom after his CT scan. The physical therapist told him that both Physical Medicine & Rehabilitation Therapy and Neurosurgery have recommended him for inpatient rehab at the KKI facility on the Johns Hopkins campus. To say he isn't happy about that is an understatement. I do not yet have a timeline for how long they expect him to remain there before he can come home and continue physical therapy as an outpatient. He will continue doing PT/OT here in Bloomburg Tower until he transfers to KKI. Occupational Therapy prescribed a boot to help him flex the left foot for walking. They will also work with him to improve his vision and regain precise control of his left arm and leg.
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| Physical Therapy doing an initial assessment before transferring all his IVs and monitors to a portable stand to take his first walk. |
Friday, August 19, 2016; 5:30am: We topped off his fentanyl at 2am because he was thrashing and said he had a headache again. All was well until 4am, when he tried to pull himself up and across the bed to pee on his own. I awoke to him nearly slamming his crani site into the bed rail, and jumped up to help him onto the bedside commode. We thought everything was going great and I was really pleased by the stability of his torso until I saw blood dripping from his hand onto the floor. IV line pulled....who designs their length, anyway?! Mild panic ensued as I called for help and pushed the nurse call button and several nurses and techs rushed in to help. He's all cleaned up, and back asleep now, and down one IV line since it was probably coming out this morning and his MAPs maintained at 65 the whole time he was offline the esmalol and nicardipine.
So. A whole beautiful night's sleep, increased ability to hold his head and torso up for a few minutes, and he got rid of one dreaded IV. PT/OT never made it yesterday, but the rehab physician team did complete their eval and put in orders for inpatient PT/OT to begin today.
Overnight Update: Sleep!! So far he's logged 5 hours' sleep after level 10 pain at 9pm. He was restless and was eye open/sleep talking midnight-1am, but he's been still for awhile. Fingers crossed he stays asleep for the rest of the night. MAPs stable, but not low enough to start titration off bp meds.
Thursday, August 18, 2016: Christopher is having a really rough time in PICU. Last night, the fentanyl kept him so chatty he only slept about 2 hours. I suspect the Decadron steroid to control swelling is also to blame. His nurse and I were pretty busy trying to keep him calm. Today, he is really frustrated at the near total loss of use of his left leg. Sensation has returned, and he has some limited ability to lift or bend the leg, but he still can't control the ankle, foot, or toes. PT/OT should come today to start teaching him/us how to function with a listless leg. The arm is still weak, but has full mobility and control. No fentanyl because he says he isn't in pain, but still can't sleep for more than 45-60 minute stretches. He has trouble focusing his eyes to read or watch a movie, and can't concentrate to listen to an audiobook, which has led to several anxiety attacks. This is all very normal post-craniotomy, and we knew to expect it, but it's very hard on a 9 year old. His MAPs are being maintained at 70, but it takes two different blood pressure meds to do it. He is therefore definitely staying a second day in PICU before he can transfer to the regular floor. Tomorrow they will do a CAT scan to monitor his brain.
The neurosurgeons are still confident that the left side deficits are temporary. The timeline for full recovery is indeterminate, though. It could be 72 hours, or it could be considerably longer. The rehabilitation physician came and evaluated him this afternoon. They are definitely recommending Physical Therapy/Occupational Therapy, but we don't yet know details. As it stands, he cannot navigate daily life, even sitting up straight is more than he can handle just now. Rehab is definitely going to have him begin PT/OT while he's still here at Johns Hopkins, hopefully as early as this afternoon.
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