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.