April 12, 2016, 11:15am
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| Christopher's nest during recovery. |
A year ago today, we woke up at 8am in Inova Children’s Hospital to receive an official diagnosis of Chiari I malformation. That day, the idea Christopher might need brain surgery to relieve his headaches was scary and mind-boggling. He was pretty emphatic it just wasn’t something he’d allow to happen. Six weeks later, he’d decided it was worth trying, but by then, we’d discovered the AVM. April 12 will probably always be a surreal anniversary today.
As expected, Christopher was discharged from Johns Hopkins Hospital first thing Sunday morning. Actually, we were rather shocked at the efficiency—we were home by 9:30am. Dr. Teresa, the resident shadowing Dr. Groves last week, came in just before 7:00 to do a final neuro check on Christopher and declare him fit to go home. She’s a bit more conversational than Dr. Groves. From her, we learned the nystagmus he developed Saturday is very common after Chiari decompressions. It started as double-vision when he tilted his head a certain way. Now, it mostly presents as blurred vision if he tries to read the small print in a book. He can read clocks and televisions just fine. It should dissipate on its own in a couple weeks. But I did ask Groves prior to surgery if he might have any vision issues this time. “Oh, no, this is a totally different procedure than last time and won’t go anywhere near actual brain tissue.”
I’m pretty well convinced that neurosurgeons compartmentalize the brain. As in, “we aren’t touching the occipital lobes, where vision lives, so we won’t see vision changes.” Last surgery, the swelling in the frontal lobe put pressure on the eyeballs, which created double vision and blurring. As the fluid resorbed, his vision returned to normal. His opthalmologist, at his post-op follow-up appointment, told us this is a very common side effect of brain surgery. This time, they separated and retracted his neck muscles to gain access to the skull and cervical vertebrae (and dura). He doesn’t like chewing because the neck muscles are so sore his jaw muscles working aggravates the neck spasm. Somehow, his eye muscles have lost perfect synchronicity, which contributes to nystagmusus. Very common after Chiari decompressions, but not something that triggered when we spoke with Groves. This time, I was amused. Neurosurgeons don’t always speak the same language we do, no matter how specific you think you’re being.
But Dr. Teresa also confirmed something we’ve suspected for a long time—even among Hopkins neurosurgeons, Groves is one of the best. The resident told us Groves’ technique is absolutely impeccable, and she felt it was a major reason Christopher didn’t have any nausea following the procedure. As infuriating as her conservative, step-wise approach was for all of us, I’m glad we stayed the course. She was right, every step of the way.
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| Alfred has spent a lot of time cuddling with Christopher on the couch. Pet therapy is real! |
Once home, Christopher and I took a 4 hour nap on Sunday. Monday, we tried to establish his post-op routine while I made his various post-op appointments. Yesterday, his good friend and neighbor Will came over to play, while I ran to the doctor for routine bloodwork and a foot X-ray. It turns out that sleep-deprivation and stairs don’t always mix. But my great toe isn’t fractured, just swollen and bruised because the arthritis is back and didn’t appreciate being stubbed. Stupid toe. Christopher took a short walk with his daddy to walk the dog. Today, we went to see the Power Rangers movie. I think the walk is shorter than what he did yesterday, and he took his pillow, but he was too exhausted for lunch afterwards and just wanted to come home.
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| If fresh fruit were a Snickers bar, Christopher would weight 300 pounds. A big shout out to the team at Accenture for sending an Edible Arrangement. Perfecto! |
Christopher doesn’t have a great appetite, but I’m not certain whether it’s the narcotics making him apathetic, or an actual side effect of the general anesthesia. I suspect the former. His taste buds are intact this time, and he’s pretty good about getting chocolate milk, fresh fruit, and a salad every day, so I’m not too concerned. A week after surgery, he has bruised eyes from the exhaustion of recovery. But his neck range of motion returned to nearly normal Monday, so he’s moving gingerly rather than robotically. Dr. Groves told us to expect to use the heavy lifting pain meds for two weeks before we started weaning down to just Tylenol and Motrin.
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| Healing is hard and exhausting work, but Christopher's mood is generally pretty good this time around. |
Tomorrow he checks in with the pediatrician, we see Groves and the other specialists again in a month. We start math in a week, then add a subject per week until he’s back to his full schedule. Christopher can swim for fun in 6 weeks and play actively with his friends once he feels up to it. No regular classes or swim team practices for three months, though, Groves doesn’t want that much exertion while he heals. It will also be that long before we know just how successful the procedure has been in alleviating headaches.
So this is our new normal for a few weeks.
April 8, 2017, 10:05am
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| Nintendo Switch, Making Hospital Life More Fun. Trust Pitsenbargers to Bring the Good Toys. |
Pain control is excellent. He wanted a fruit cup, the mango that came with his lunch was truly nasty. He wanted to walk with me to the cafeteria, which is a long trek from the pediatric tower (Bloomberg). He quietly told me as we were nearly back that it was too much and he hurt a lot. No anxiety or irritability or stress, just a quiet statement. So of course, PT showed up shortly after we got him back into bed. But he was happy to do everything they asked. His only IV med is the steroid at this point, everything else is by mouth. Switching the Dilaudid to a pill every 4 hours is giving him much better pain coverage, hopefully that continues.
Hopefully, because he’s still asleep. I LOVE Hopkins Peds General Floor. His night nurse shifted his med schedule last night to line up with his neuro exams so she only had to come in once every 4 hours, she kept all the lights off, so he just went right back to sleep. This is their standard modus operandi, not just a great nurse. If you have a choice of hospitals for a several day inpatient stay, I’d definitely ask about night care. The studies on maintaining normal night-time Circadians clearly demonstrate shortened recovery time and less dependence on pain meds. There’s a whole host of reasons that isn’t very practical in the ICU, but anywhere else, I feel like it’s a crime to be barging in every 1.5 hours.
Dr. Groves came in to see him just before 7am. She is still shocked at how “surprisingly well” he’s doing. He’s already meeting most of their metrics for discharge, so she’s put in the orders for tomorrow so they can have the pharmacy start filling his prescriptions today. She says that seems to be the rate-limiting step in leaving. Should something develop today where he needs/wants to stay an extra day, she has no problem keeping him, but she says there’s really nothing more here than what we’d be doing at home. So, woo! and hoo! He’ll probably need to stay on the Dilaudid/Valium for 2 weeks, liberal use of Tylenol/Motrin for several weeks after. We’ll follow-up with Groves at 4-6 weeks. He can return to active play about that time, just no regular classes like ballet or swim team. Too much exertion. He can return to gradual school work in 2-4 weeks, letting his energy be our guide.
He woke up at 9am! He pretty calm about it, but he is at a level 8. Morning meds are on board except the Dilaudid, that requires breakfast. But Heather and Bryson Pitsenbarger arrived with Star Wars drones, so he is now properly distracted (and the Valium is kicking in). I’ve ordered breakfast, I should have just guessed what he wanted while he was asleep, but it should be here before 10:30am.
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| Even Box Drones Need Calibration! |
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| The X-Wing is on the floor, the Death Star is hovering in the background. |
April 7, 2016, 11:15am
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| Nothing says "Happy" like getting out of PICU. |
PICU overnight was not a total nightmare. First off, Nurse Olivia was amazing. When the cement in Christopher’s hair dried enough to start bothering him, she offered to syringe wash it. She spent 45 minutes gently lavaging the hair and removing the ook with a comb while keeping the incision site clean. It still definitely needs a shampoo, but he was comfortable enough to lay on it again. And the incision site stopped oozing, we switched to a new pillowcase afterwards, which stayed clean all night.
But it’s PICU, so they’re doing checks every 2 hours and the alarms aren’t silenced. We got to hear about it every time the computer didn’t like the respiratory rate or blood pressure readings it was getting from the arterial line. Christopher didn’t believe us when we told him that using his Dilaudid pain pump wasn’t going to prevent him from going home on time, so he suffered more than he needed to. He receives Valium and Tylenol every 4 hours without choice, so he wasn’t handling pain completely med free, but it could have been better. At 6am, we gave up attempting to sleep and he watched the original Tron movie after hitting the Dilaudid button. The muscle pain in his neck is settling in now that the anesthesia is fully out of his system, though, so he had a rough period around 8am. He was in enough pain he couldn’t focus on listening to his audiobook the way we did last night. His range of motion is definitely restricted today, but he’s getting in and out of bed to use the restroom fine. He’s had no nausea of any kind. From neurosurgery and pain management’s perspective, he’s fantastic, so they actually approved orders for him to transfer to the general floor even before morning rounds.
And that means—we’re on the general floor! Before 9am! I didn’t even think that was possible in a hospital. Arterial lines aren’t allowed on the general floor, so that is out, much to his delight. Pain management wants to try transitioning him to pills, which also pleases him. IV Valium burns going in. Last night, it didn’t bother him much, but the most agitated he’s been, was his last Valium dose. As luck would have it, pain management was in the room to witness it, so they switched him to oral Valium before his next dose. The only delay was making sure he tolerates solid food, as he wasn’t allowed anything except popsicles last night. Supermom that I am, I bought him a chocolate croissant with my chai latte and scone this morning so that I’d have food ready the moment they allowed it. I had a feeling it wouldn’t happen before breakfast time. He was thrilled and ate the whole thing. No nausea, no weird tastes, great appetite. So apparently we can blame just about all of the digestive trouble last go-around on Keppra. He is a mite more irritable than normal, but no massive roid rages like last time, despite being on IV Dekadron again.
His lunch order arrived, a bacon cheeseburger and salad. He’s eating it in between naps, I think his Circadians are backwards! No worries, last night was rough and he needs the sleep. He just got released from live monitoring. They are trying to wean him off the PCA pump, which may give better pain coverage, as pills last 4 hours instead of quick IV burst. He may also graduate to 4 hour neuro checks soon. There will remain a concern for the development of meningitis and CSF leaks for a week, but his sodium checks have been clear so far, nor is there oozing in the incision site or bubbling under the wound. We have the same room we had last time we were on the general floor, and since Hopkins separates the floor by age group, we don’t have any crying babies nearby, only school age kids. This makes everything so.much.quieter.
Seriously, it’s hard to believe he just had brain surgery. Everything is really quite relaxed. I haven’t had much time to knit today, but I have nearly completed Section 1 of my blanket. In 2.5 rows, I’ll begin the lace section. Last surgery, I couldn’t bring myself to knit because that meant time to let my thoughts wander. They raced, not wandered, to very dark places, so I didn’t place a single stitch after the AVM. It didn’t help I was starting a new project that required learning new stuff, and I had no confidence I had the focus at that juncture for acquiring new skills. This time around is a much different experience for us all.
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| The beginnings of a blanket, it's ~40" wide. |
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