Sunday, September 30, 2012

The worry train

The one thing that doesn't seem to change about this CDH business is my occasional need to ride the worry train. The rides are slower, less intense, and I disembark more frequently. But that constant question - "am I doing the right things for my kids?" - has a bit of a different flavour when it comes to Sam. I have started leaving him a few hours a week with a very capable caregiver and, in addition to the regular missing him stuff, I worry if he's being exposed to extra germs, if he's missing the time I would spend integrating physio and speech stuff. When he is well, I think about what else I could be doing to help along his development and put some meat on his bones. When he is sick, I wonder if it's a normal kid thing or a sign of something uniquely "Sam" that I need to attend to. 

Samuel has been "off" for more than a week now. He had a few low grade fevers in the night that were resolved by morning. He had a slightly crusty nose and was slightly clingy and his appetite was slightly erratic. And he suddenly started pooping like a normal baby which initially made me go WOOT! and then made me go Hmmm. After fighting with constipation his entire pooping life, sudden normal baby poop is just curious.

For the whole week he's been not quite sick and not quite well. I watched, googled "intermittent fevers" and was glad when the pediatrician at our regular appointment this week checked his ears and listened to his lungs. On Friday morning he took a downturn, intensifying all of the above and then tossing in a faster respiration rate. That breathing thing is the red flag. One of my other children breathes hard with a bit of a fever too. Is Samuel just like his brother or is there some kind of respiratory distress because his lungs are underdeveloped?

The first ER doctor we saw seemed to think that this was just a virus and we should go home. Maybe so but it made me want to emphasize that I am not a histrionic mum who brings her baby to the ER for a virus. In fact, the only times we've taken Sam to ER besides today was when he'd only been home two weeks and everything was terrifying and when he reherniated his diaphragm the first time. 

So I told the nurse that I know the difference between my anxiety and my intuition. Isn't that a good line? It's true, but not because I am soooo evolved and insightful. It's because my anxiety manifests as a crazy person who thinks that Samuel's intermittent fevers are because he has leukemia. Usually, I manage to be quiet about this anxious person and her ideas. But today while packing for the hospital I did call Heart-Sister and there might have been some flapping of hands and shrieking OH MY GOOOOOSH! WHAT IF HE HAS LEUKEEEEEEMIA?! She probably rolled her eyes at this. Really, who could blame her. But she responded kindly and with her special brand of bossiness. 

So everything this side of hand flapping and extended vowel sounds is potentially intuition. Sometimes it is incredibly clear, as when I knew that something was wrong as soon as I learned I was pregnant, when I knew that Samuel didn't need a tracheostomy, and when I knew that Samuel had reherniated the first time. Other times it is more amorphous but still feels like "somthing." This is hard to explain to some medical folks and others seem to really get it. 

So they checked his oxygen sats and listened to his lungs; always good to rule out respiratory distress and pneumonia first. They asked me lots of questions. I did note that his brother had evidence of a recently resolved ear infection. And I told them that Samuel had abdominal malrotations, that his organs are in unique positions and we are not really sure where his appendix is. They looked at his recent blood work and checked his ears again and again and tried to get a urine sample using a catheter.

Um, that last part was pretty awful. I have seen some invasive things done to our Sam but he's well enough now to be really mad about it. He was so mad about being restrained and poked in his penis that he actually used clear and appropriately placed words. I stroked his little head while he screamed hard enough to turn his face purple and he repeated NO NO NO NO NO NO! (gasp for air) NO NO NO NO NO NO! It was one of the least awesome moments of my whole life. AND they couldn't get any pee out of the deal. Cue dehydration worries. 

Shortly after that, while Sam's post-sob hiccups were winding down, he projectile vomited all. over. the. place. There were actually several good things about this. First, we were in the hospital where nurses come to help your vomit-covered self and they call "wet clean up in room 17" and this blessed person shows up with a mop. That does not happen when my kids barf at home.

Second, I got a pair of comfy blue hospital scrub pants out of the deal. I can't believe we have spent six months living in that hospital and these are my first scrubs! I am going to get "hospital mum" printed down one leg of my new leisure wear and have little baby hand prints put on each bum cheek. Take that, teenaged girlies in your faux-jock sweatpants. 

Finally, and most importantly, Samuel started to get better. A half hour later, he agreed to eat something. He had a sip of his bottle and half a pretzel. He drank half a little hospital cup of apple juice. Since he's never tasted juice before, this was quite an animated experience. Another hour after that, he popped up from his cuddle position on my shoulder and said, "Uhn-GO!" Okay, let's go.  

We are still not sure what all the drama was about and we are on a short leash in case we need to go back. Sometimes, he seems fine and he eats and plays giggly games. Other times, he seems unwell, spikes a little fever and breathes a little harder and throws up. He sleeps a lot and is fitful at night. But there is nothing specific to pin our hats on so I'm on a long, slow ride on the worry train, watching my baby and waiting for that intuition, that solid feeling in my belly, to tell me what's what. 

Friday, September 14, 2012

A bit of stuff, a bit of surgery

After returning from our (amazingly lovely) vacation, Samuel had a bunch of 18 month old follow-up appointments. Yes, 18 month old. He turned 18 months old. Wow.

We saw the dietician, the feeding OT, audiology, surgery, physiotherapy, the developmental OT, and ophthalmology. I learned a few things during these appointments. For instance, since Sam gained nearly a whole pound while on holidays, we are clearly meant to quit our jobs, move to Vancouver Island, and languish by the sea for the rest of our days. Clearly. 

I have also learned that butt scootching can be a highly effective means of transportation. Sam is walking assisted but, when he needs to motor independently, he can get around pretty much anywhere he needs to be using this backwards scoot method. When he needs to change direction, he pivots and goes. The only thing that foils his plan is if he backs himself into a corner where he can't pivot to get out. I respond to his calls of frustration immediately, of course. I do not pause to take a photo of his little stuck self. That would just be mean. Who would do that?! Sheesh.


"Dangit. I can't pivot. I can't back up. Somebody help me." 
You'll notice here toy basket carefully positioned on top of the furnace vent. That is because Sam's fave thing in the world is to lift the vent cover and throw all manner of things down the hole. This includes wooden blocks, plastic animals, thousands of dollars in Monopoly money, and my $200 running watch. Fortunately, the running watch was attached to the charger, which was attached by a long cord to the wall, so it was retrievable. And I have taken the hint that I'd better start running again if I want to keep my stuff.

The appointments are kind of exhausting as Sam is age-appropriately uncooperative. He doesn't want to cuddle with me on an exam table while grown-ups talk and he doesn't want to jump through people's hoops when he could be practice-walking up and down the halls. He fought HARD against the lovely audiologists putting little probe thingies in his ears to test his hearing. We gave up and they sent me home with some little ear probe thingies so that I could try to desensitize him for next time. As if. Sam will not wear a hat or sunglasses or let you help him with his spoon. There are precious few areas where he has some control and he has ideas about how these areas will go. After all the medical interventions he's had, if he wants to say "no thank you, you may not stick probe thingies in my ears" then I am loathe to force the issue.

As for the surgery part, Samuel is heading into the OR again on November 7. The ophthalmologist decided that this is the perfect time to fix his strabismus, which has been worsening steadily. The main issues associated with Samuel's ocular albinism are nystagmus (eyes roving back and forth), photophobia (difficulty processing light, which then obscures vision) and strabismus (eyes drifting inwards). Nystagmus and photophobia can be managed but not fixed; he will have some measure of those forever.

Strabismus, however, can be fixed with surgery to weaken the muscles that pull the eye inwards. The Eye Guy says that the outer eye muscles will then take over to pull the eye back outwards, and the brain will so appreciate the eyes facing forwards that it will lock them into place. The eyes start working together again and depth perception is restored. This is a 20-30 minute procedure and the ophthalmologist said this is a "meat and potatoes surgery" for him, which I am pretty sure means it's a simple thing that he does all the time, versus other possible quirky and/or frightening interpretations of "meat and potatoes surgery."  

All sounds pretty simple, right? No 12 hour life-threatening surgeries here. So I made my requisite all's-good jokes, asked my capable-mommy questions, and then I hightailed it out of Vision Clinic in the hopes that I could get to the parkade before the tears came. I don't really want my baby going back into surgery. It bites. But on top of that, eye surgery icks me out. It seems like you shouldn't mess with something that has its very own reflex to keep you from getting in there.

But this will help him to see better and it is part of him getting well. It will probably help him with skills like walking since he'll have the depth perception to determine what is a step and what is just a change in flooring. And it might even be the last surgery ever because, while Sam is in the OR for strabismus surgery, his Goddess-Surgeon is going to come in and fix his undescended testicle. And that is the last little Sam repair job left! How cool is it that these two surgeons are willing to work together (and that their booking people could figure out surgeon schedules and OR time) so that Sam only needs one anesthetic?! Very grateful. 

(Funny that eye surgery icks me out, but testicle surgery, not so much. Hmm. Feel free to ponder.)

So Samuel might just rock it, be extubated at the end of surgery, and come home that same day. But more likely, we will spend a night or so in hospital for respiratory monitoring. I don't know if this will be in ICU but I hope not. I love my ICU people more than I can ever say and am happy to visit, but our times spent there have been a lot about whether Sam is dying and I'm kind of done with that stuff, thank you very much. 

Yep. Done with the dying stuff. Gonna go feed my baby muffin and eggs now. I leave you with a few pictures of him from our vacation. 


Cruising around the coffee table on the deck. 
Sam scooting over to play with his favourite friend, creatively named "Pocket Door." 
Sam, meet Pacific Ocean. Pacific Ocean, meet Sam.