Bitter:
Today, Colin had a follow-up MRI of his head and cervical spine which had to be performed under anesthesia. The prospect of the procedure was extremely stressful because of the steroids that have exploded his appetite. Mom had to sleep on the couch to reduce the stress of having milk/comfort tantalizingly close yet inaccessible.
He was supposed to be the second case (we strongly suspect this is not how it actually played out!) and were asked to check in at 8:00 for a procedure that would start at around 9:30. Fortunately, Colin fell asleep en route and was very amenable to the early parts of the wait.
However, we were delayed quite a bit and finally, when he was being prepared for the procedure, we had to wait an additional 30 minutes for his port to be prepped for access. Now, this was incredibly aggravating because nobody had EVER told us about this aspect of the port. In the 1,000 times the surgeon asked us if we had any questions (Dr. McBride is extremely good about this, and willing to answer anything), it never occurred to us to ask if there was anything special that we as parents needed to do to ready the port. That always seemed like a medical thing and, if our involvement were useful, we would be told.
The first indication of this was when the nurse who checked us into the perianesthesia area asked if I had already put the EMLA cream on the port. Mom’s face said, “Huh? What the hell are you talking about?” She sighed and explained that you slap it on the port and let it sit to numb the area so the kid doesn’t feel the needle go in.
I’d been joking about the access being like a Mr. Potato Head (classic style, using real potato) part, but hadn’t thought about comfort measures for the potato. Well, the nurse wasn’t able to simply get EMLA and put it on herself because it’s a prescription thing, yada yada. It’s yet another thing I have to ask for from a physician, but at least I left with an extra tube and the plastic covering that holds the cream in place while you wait.
This whole experience harkens back to a Donald Rumsfeldian analysis of the issues with managing a medical situation as a layperson. There are the knowns (i.e. medical history of our child and his personality, etc.); the known unknowns(i.e. neurosurgery); and the unknown unknowns. The unknown unknowns, such as the soothing glory of EMLA cream, are annoying at best and dangerous at worst. The next thing that we don’t know to ask about could have much more serious consequences.
It’s unfortunate that we haven’t had more contact with other oncology patient parents, who might have educated about this accidentally or otherwise. While waiting for the MRI in the lobby of the hospital, I overheard a dad explaining to his son that they already put the “magic cream” on the port so it won’t hurt. It was sweet and part of a very natural conversation over something that is fundamentally painful.
Being at a hospital that cares for many seriously ill children, one often catches snippets of conversations that hint at cancer or other life threatening illness. In the ambulatory patient waiting room, a family was waiting with the mother looking more somber and anxoius than the typical parent waiting for ear tubes to go in. The surgeon came out in the waiting room and explained, among other things, that the biopsy would take a week to come in.
The best part of the MRI was the fact that Colin entered as an ambulatory patient and went home in his own clothes. Given his diagnosis, there was repeated confusion over the fact that he would be returning home at the end of the procedure. He was, according to the staff, unusually good about having the access put in for the first time (while conscious). Fortunately, the port also obviated the need for an additional sedative that is often given to facilitate insertion of a peripheral IV.
As Colin’s parent, it felt good to tell him that he would be going home again and to show him that not all medical procedures result in major surgery. We feel that this is part of the process of building trust with him and reassuring him that we will always bring him home whenever we can.
The MRI was uneventful although quite long (always longer than anybody except the MRI techs and anesthesia team think). This gave Mom the opportunity to eat and get some work done. Integrating hospital procedures into the daily routine — or perhaps vice versa — is part of the family’s new reality. Working feels good and reassuringly non-clinical.
Today, we also realized that Dr. Foreman from Denver did email us last week but his email ended up in Yahoo’s spam filter. He wasn’t even trying to sell us Viagra on the side! At any rate, there wasn’t much to it except the fact that, yes the tumor is large and the diagnosis seems correct; he was waiting for his best neurosurgeon to return to town to provide additional comment.
The MRI from today went to Boston and will be part of the clinic. Also, we faxed the missing surgical notes (argh!). Part of the management of all this includes understanding the medical records process. Mom was able to pre-sign a release form for the MRI, then have the MRI tech call the radiology films library to let them know the study was done, in order to have the CD made up both for our records and to send to Boston. It involves some running around in the bizarre maze of the main hospital, and it’s hard to imagine somebody even attempting it without some prior knowledge of the physical layout of the building and internal procedures.
Most importantly, Colin woke up from the procedure fine and gorged himself on hospital jello, a perennial favorite. He put on normal clothes and headed home a bit sleepy and sticky from various applications of adhesive tape and so forth but otherwise in one piece.
Sweet:
Colin enjoyed the equivalent of a one-boy amusement park at home. Aunt Polly and Uncle Steve brought over a small quad and took him for a ride (slowly and carefully!) outside. Colin got a thrill out of the adventure, complaining when his big brother and buddy Kiyoshi got a turn. Except for the mosquitos, it was an awesome time.
Colin also got to flirt with Aunt Jessie, who got numerous kisses out of him. He played with both Polly and Steve, who always put a bit smile on his face, with or without a quad. Somehow, Polly can make Colin laugh even when she’s complaining about work.
He had a grand old time and went to bed with a big contented grin. We look forward to more days of fun and socializing before his next big surgery. Even the most optimistic estimates for recovery are fairly long and will include his first rounds of chemo, so this is his chance to enjoy his freedom. We may put in an appearance at school where he can see plenty of familiar faces, but we also welcome visitors to the house.