Today was a perfect storm sort of day. We would either have a day full of frights and horrors from beginning to end or we would have a day of unparalleled delights and successes.
We recently had one of the former—a day in which Nik pushed the limits to breaking. He figured out how to open the lock on the laundry door (using careful analytical skills and brute five-year-old force), purposely defecated on the family room floor (making nary a mess anywhere except in a very neat little spot), and pulled his feeding tube out multiple times in the span of just a couple of hours.
The last time he pulled the tube, he chewed on the silicone balloon until it burst into small bits—which could have choked him —and which rendered the tube unusable. Did I mention we’ve gone through six tubes in as many weeks? Yes, we’ve run through what should have been a six month supply already. (Hey, we don’t do things in half-measure around here!)
A perfect storm was definitely brewing.
Thankfully, today was the antithesis to that other day. Nik woke —dry and still dressed in his big boy pants. He refuses to wear a diaper or pull-up overnight and we decided it wasn’t a battle worth fighting. He’s happy and we do a bit more laundry than we’d like some days, but so what?
My super trooper woke up hungry as a bear. Seriously, the first thing he did when he popped up into a sitting position in his crib in the early morning hours? Signed eat banana. I kid you not. So we trundled downstairs in our jammies and proceeded to eat Cheerios and bananas and —for the first time ever— a juicy, fresh peach. Really, the peach was for me but he wanted to try it. I never got it back.
Our schedule was jam-packed for the day: PT followed by a developmental play group then lunch and the long drive to the hospital to see both the ENT and the GI doctors to figure out what to do with his ears and his feeding tube. If all went well with the ENT, there were plans to squeeze in a hearing test, too. The piece de resistance: the drive home in rush hour traffic with time to spare for dinner and bed.
So many opportunities for disappointment, frustration or meltdowns of epic proportions for my little guy. It felt like we were walking through an old mine field without any clue as to where the next booby trap might lay.
Nik sailed through an awesome PT session and a delightful play group where he did things he’s never done before— or things he once screamed and resisted doing— with an ease and a confidence that made everyone remark on how far he’s come and how much he’s developing. It was, I confess, a morning which made me burst with pride. More importantly, it was a morning which made Nik squeal with glee and sing with unfettered joy.
The trip to the hospital took longer than we thought so we weren’t quite prepared with enough food to stoke our little eating machine; he did have one hunger-induced meltdown late in the day as we waited for the cafeteria to open so we could get dinner before driving home in rush hour traffic. Once Nik realized he was going to get to eat, he calmed pretty quickly —and ate like the rapidly growing boy that he is.
Our visit to the GI was really just to have her check the measurements of Nik’s stoma site to make sure we have the right size tube. We’re going to try a different product and see if it doesn’t hold up to Nik’s abuse a bit better. The new device has to be ordered so we’re stuck with the dreaded Mic-Key button for a bit longer. Meanwhile though, they gave us a backup tube to take home —just in case!
It was sheer delight to be able to see the look on the doctor’s face when we told her Nik hasn’t had any formula since the end of April. Her jaw dropped and then her whole face split into a grin. “That is fantastic news! You’e worked so hard for this you must be so pleased!” she said in her typical understated fashion.
Then it was our turn for a collective jaw-drop. After taking Nik’s height and weight, the nurse informed us that Nik’s grown just over half an inch in the past six weeks. (I’ll wait while that sinks in…) That certainly explains why he’s got an insatiable appetite and why he’s not gained any weight. I know he’ll be built like Niksdad —tall and lean— but I was sort of hoping he might wait a few more years before he tries to catch up to him!
Our visit with the ENT went better than we expected. Okay, other than the part where the audiology department forgot to check us in and we waited too long for a hearing test. The bottom line is that Nik’s hearing is in the normal range, there’s no sign of infection or other cause for alarm and the ENT is going to investigate the mysterious mastoid fluid build up. He wants to see Nik in three months and may order a CT scan then. He also asked us to send him copies of the MRI’s so he can review them as a series.
Basically, as long as Nik’s hearing is okay and there’s no sign of infection, the approach is to wait and watch. The alternative would be a mastoidectomy which none of us is prepared for. We are, however, probably looking at a new set of myringotomy tubes this winter; this will make Nik’s third set. *sigh*
By the time we finished with the back and forth of seeing the ENT then getting the hearing test and seeing the ENT again to discuss the results, Nik was pretty tired. But not too tired to eat his way through the hospital cafeteria once it opened for dinner at 5:00 p.m.
In addition to his old standby, peanut butter sandwich, Nik scarfed down a banana, some cantaloupe, some pineapple and several bites of my baby lima beans. My God, the boy can put it away!
By all rights, Nik was fully entitled to a cranky ride home and a fussy time before bed. Nope. He sang and chattered and played with his LeapPad book and then willingly put on his pajamas and let us brush his teeth. He was asleep before we even closed the door to his room.
Serendipity? Perfect Storm? Whatever it is, I’ll take a few more like this, please!