Our doctor has a sense of humor!

On Jack’s discharge papers he said,

“no SCUBA diving.”

And those are medical instructions we can follow. No SCUBA diving, with Jack, until those dang tubes fall out on their own.

The patient is doing well. He was ravenous after not eating all morning and considers the cherry bubblegum smell of the anesthesia NOT at all pleasing. Other than some mild trauma to the parents all is well.

Also? Did you know that they can administer tylenol rectally? Consider yourself informed.

 

they got yo gabba gabba in the waiting room 

Watching Yo Gabba Gabba in the pre-op waiting room. That damn show follows us around, I swear

Tubes Dude – With apologies to my brother

Newsflash: I have a younger brother. When we were young he was constantly sick…check that, now that we’re old he’s still constantly breaking bones (ask him about his shoulder the next time you see him, go on, ask), so, I guess his ongoing tour of primo emergency rooms in the US continues.

Zeke was ALWAYS getting ear infections. I remember because it was always like, “hey Zeke, you look a little red, wait a minute, don’t pass out from that 105 DEGREE FEVER, oh. wait. It’s just another ear infection…ice him down, he’ll be fine”

Poor little dude. Zeke’s doctors diagnosed his ear problem as “unusual” and “rare” he had “stalactites and stalagmites growing in his eardrums.” I still don’t understand it, but we all had the images of them from his ear x-rays. There they were clear as day…little rock-like formations in my brother’s ears.

I remember the odessey my family took to get Zeke some of those “new fangled” tubes. I think we ended up at Children’s Hospital in Philly for the surgery and how nervous my parents were. And oh I remember the drama if you got the poor kid’s ears wet. The silly putty ear plugs and the no-fun beach time. God. That sucked.

And then, poor Zeke, there was that episode with the He-Man Sword and the eardrum. Word to the wise, it turns out that small boys should NOT be given anything smaller than their ear canal, or their nasal passageways for that matter, because just maybe, said small boy might need to stick that small and pointy object, in their ear, or up their nostril. Now I am not saying I know anybody who has punctured their ear drum with a He-Man sword or visited the hospital TWICE to have popcorn kernels removed from their nose. AND I certainly don’t know someone who still has a tiddlywink stuck way up in their left nostril. Nope, no one that I am related to, no way.

*God, I so want to make an “I HAVE THE POWER” joke and somehow tie it into tiddlywinks but I can’t seem to make it work, thoughts?*

So yes. I know my way around an eardrum. Eustation tubes and I, old pals.

When Jack was on his third ear infection in so many months I pushed for a referral for an ENT. “Wait,” said our pediatrician, “he might outgrow it…” and lo, 3 weeks later the child has another ear infection, a double doozy it seems (his ears are GREEN, no lie) and lickity-split we’re in the ENT offices.

After a faster than the speed of light examination and a hearing test, where we determined that the kid couldn’t hear a damn thing, we ended up with the head of Pediatric ENT surgery at Mount Siani telling me that normally he doesn’t recommend immediate intervention but in this case he’d like to get Jack into surgery in the next 2 weeks. Fine, “sign us up “was my exact response.

April 7th. Tubes dude. Tubes.

Bummer Toes

Today Jack had a visit with a neurologist. Like the night before all of his doctor’s appointments, I was up late, worrying. Luckily, I wasn’t alone. The child is getting a ton of teeth and we comforted each other in the early morning. Him, gnawing on a variety of teething implements and finally his foot, and me, nursing a glass of sub par white wine.

We were referred to the neurologist because Jack has hypotonia in his trunk and his legs. He is very “floppy all over,” a pretty common description of former preemies. His physical therapist also noted that he had ankle clonus. Both of these conditions are associated with Cerebral Palsy in premature babies.

Jack had very good luck and very good care in the NICU. He had no diagnosed brain bleeds and for a long time we thought that meant he was totally in the clear for long term neurological damage. And then comes my curiosity and my friend google. According to a variety of medical experts, of the preemie babies with CP, 50% of them did not show brain bleeds but, still have some form of Cerebral Palsy.

You can see why I was awake last night.

The Neuro was very young, very nice, and laughed at my encyclopedia like knowledge of Jack’s medical history. We had a long physical exam where all of Jack’s reflexes were tested extensively and some weird things were done (tuning harp to the foot anyone?)

Long story short. He looks “real good” for an ex-27 weeker, but he has to be followed. It’s too soon to tell for sure, but he looks too good to have an MRI. Too good to do a head ultra-sound. Too good for a diagnosis of CP… For Now (gosh, where have I heard those words before?)

We were riding home in a cab from 165th street and I was thinking that the NICU roller coaster has not really ended, it’s just that the peaks and the valleys have gotten further apart. Just when we think that all is well and we can get off the ride, we’re upside down all over again.

The neuro did give us one solid diagnosis. Jack has a genetic abnormality, hammer toes, courtesy of Archie’s side of the family. Bummer toes I called them.

Considering what we could have heard today, I’ll take the news of bummer toes with a smile.

* Edited to reflect Liz’s description of the data. Damn statistics, they are my worst enemy

Peepers

Jack had his 6 month check up with his pediatric ophthalmologist today. The night before I was distracted and slightly weepy. I had gotten used to all of those doctor’s visits and there was something comforting in having “professionals” follow him so closely. Then when all of his doctors said he was fine, “we don’t need to see him once a week anymore”… that was great and all, but still I worried. What if we, “non-expert parents” that we are, missed something between check-ups?

Jack is being followed for complications related to ROP. He had laser surgery in the NICU and we have been watching his eyes, and his behavior, very closely for any deterioration in his eyesight ever since. Complications from ROP include severe nearsightedness (myopia), strabismus (lazy eye), lack of visual acuity, retinal detachment and blindness.

While Jack is at high risk for all of these things he is doing quite well. In fact, Jack has the eyesight of a normal 8 month old (20/40), with a 10% loss in his peripheral vision. He’s farsighted but that’s a totally normal baby thing.

Arch came with me to this appointment because I was worried that the other shoe was going to drop. Not for any specific reason, but because I worry, you know?

So today, instead of a shoe dropping, we got a “lookin’ good, see you in 6 months…” from the optho. And we got assurances. Assurances that when our little boy smiles at us from across the room, it’s because he can SEE us.

It’s amazing what I used to take for granted.

Health Update # 500,213,412 x eleventy

Baby Gigantor

Yup. That is the little, er big dude’s, new nickname.

Jack is a huge celebrity at his Pediatrician’s office. The entire office staff remembers how tiny he was when he came in the first time (at 6 pounds 5 ounces), so the announcement that he is now 16 pounds 11 ounces was met with much fanfare. Nevermind that his birthweight was 2 pounds 4 ounces!

Jack is solidly on the growth charts for his actual age of 6 months. 27% for his height and 30% for his weight. He’s in the 99th percentile for both height and weight if we use his corrected age of 3 months. And yes. This is a big deal. The fact that he is on the growth charts for his actual age at all is pretty amazing.

He was declared fit as a fiddle by the pediatrician. No eye issues, no tummy issues, and right on track developmentally for his corrected age. My obsession with Purell has paid off, we made it through our first winter without RSV or even a cold!

Speaking of RSV, Jack got his last synagis shot of the season and is cleared for playdates and birthday parties with healthy babies- Mabel better watch out, cause the real party is coming to town this saturday…