This will be short because I’m so exhausted I literally can’t see straight. I realize the above photo could be misread as an image of Charlie writhing in pain. Know that I would never post something like that—it’s actually him laughing hysterically at something the nurse said shortly before he finally fell asleep. If you knew the miserable day he had, you’d see why I am so thrilled that it ended with happy laughter and smiles.
The reason Charlie had to have his ventriculoperitoneal shunt taken out last week was because he had developed an abdominal cerebrospinal pseudocyst which is why he had such a distended belly. It basically meant that the fluid that is always being drained from his brain into his peritoneal cavity was not absorbing so a large mass of CSF had formed that, if left untreated, would have (very soon) caused a major shunt malfunction. After removing the shunt, the doctor was hoping that the fluid would then absorb on its own but it didn’t so today a team of folks performed a procedure in which the fluid was aspirated from his abdomen. The bag with fluid you see on the right in the above photo is not urine in a colostomy bag, it’s Charlie’s cerebrospinal fluid that continues to drain from tubing that was placed in his peritoneal cavity. Oy. They’ve already removed over 1200 cc of the stuff which is more than a liter’s worth! His previously large round tummy is now as flat as a contestant on “The Bachelor.” Can someone please aspirate MY belly?
The many hours leading up to the procedure were a nightmare because it took ALL DAY to gather the team but meanwhile they had taken Charlie off all food and drink the night before, thinking the surgery might be in the morning. I’m sure all parents out there, especially Jewish ones, can imagine how it feels to have your child BEGGING for food all day and crying when you explain that he can’t have any. It’s not like he was truly suffering, they put him on an IV as soon as he went NPO, but that’s small comfort when your baby is screaming for sustenance! He had a very hard day all around, starting with waking up at 3 am for several hours and losing it many times throughout the morning and afternoon. As for me, my nerves were as taut as a Patty Duke’s Neely O’Hara in “Valley of the Dolls.” Even my beloved Turner Classic Movies were of no help. The only thing I learned from today’s slate of films is that Sigourney Weaver and Mel Gibson both looked about 14 in “The Year of Living Dangerously” and that while Weaver has aged quite gracefully and beautifully, Gibson decidedly has not.
Charlie was miserable after the surgery as well, but then, as the chicken soup-like fluid continued to flow out of him, it was like every unpleasant sensation was also exiting his body because he miraculously transformed before our eyes back into the sweetest, bravest, cutest patient ever to grace the Cedars-Sinai PICU. Getting to eat again didn’t hurt. Here’s one of his first post-op indulgences: a marshmallow lollipop left over from Valentine’s Day. When he was done eating it the sparkling red sugar covered his mouth, making it look like we had slathered red glitter lipstick all over his lips. Would that be wrong?