Feb. 19

Family day weekend ended with an unexpected and unwelcome twist.  Ryan was enjoying his formula in his sippy cup when he took a 'too big' gulp.  He started to gag (like a cat having a hair ball).  We knew what was coming so we got the cloth ready to catch.... unfortunately, his feeding tube came up. AGAIN.  Last time, we blamed the thicker banana 'smoothie' he was having, this time it was straight formula.  It's funny how calm we were.  My mom had no idea what had happened.  I pulled the rest of the tube out of his nose, continued to let him have more of his formula because I knew it'd be a long time until he'd be able to eat again.  We ate supper, packed up everything and headed down to Sick Kids, which is the plan for days when our 'regular' clinic isn't open.  Last time we went down to get the tube reinserted, we were there and back in 3 hours... piece of cake, right?  Wrong.  It was PACKED.  Because it was a long weekend, all the walk-in clinics were closed so everybody and their sick brother were at Sick Kids.  I tried to play all my cards (baby on oxygen, hasn't eaten since 5 pm, chronic lung disease...)  Usually at first mention of any one of these things, we get put right into a room.  Not this time.  Even writing about this is making me feel anxious and tense.  If you know much about how we are with Ryan, you'll know that we do not wait in waiting rooms whenever possible.  When we arrive at appointments, we always ask to be put into a room to wait.  Not only to save him from exposure, but also to allow him to get out of his car seat, which he really shouldn't sit in for more than an hour at a time.  Sick Kids is usually quite accommodating when they can be.  So, a nice nurse finally took us into the triage room.  I had come prepared with pre-cut tapes and a spare tube.  Usually the nurses there are aces at getting them in the first time. Usually.  We got bumped into the 'resus' room.  The nurse said we'd have a roommate.  I immediately hesitated and asked to ensure that the roommate wasn't having respiratory issues (writing this now, I should've known that a kid in the resus room would most definitely be having respiratory issues).  She assured us it was 'ok' and that we'll be in and out.  "the room is big, so you'll be fine." I have a lot of faith in Sick Kids, so in we went.  I got all the supplies ready for the nurse.  She attempted the insertion but we didn't get the proper checks afterwards so we pulled it out. Meanwhile, a resident doctor came in to talk to the roommate's parents.  We obviously overheard them because all that was between us was a curtain.  We heard the words, "there is a bit of pneumonia."  I'm not sure how loud my voice was, or how many swear words I used, but basically it was probably something along the lines of, "why the #*@* would they put us in a room with a kid with pneumonia!!?"  We grabbed our nurse (who, incidentally had been working with this kid as well as doing Ryan's insertion) and asked to be moved immediately.  We were shuffled over to another room... maybe a trauma room that was luckily empty except for someone working on a computer who kept coughing and sneezing.  I believe this is where I lost it. More.  For the life of me I cannot understand why on earth they would put someone like Ryan in jeopardy like this.  In their defense, the nurse was trying to get us out in a timely manner... however, at the risk of pneumonia and who knows what else... I don't know if the 'risk' was worth it**.  Word got out that I was 'very' upset, so the charge nurse and the staff physician came in to apologize and tell me that next time I should tell the person that we are always careful to protect Ryan from respiratory illness.  Really??!!  I DID!!!  They were nice and apologetic, and admitted that it was a mistake that hopefully will not be made again.  Now we watch and wait to see if Ryan starts showing any signs of infection.  As a side note, the tube insertion was no walk in the park either... poor guy.  I can't even imagine how it makes him feel. 
**Explanation: children with chronic lung disease are very prone to severe infection (specifically for the first 2 years of life).  A stuffy nose to someone can easily turn into pneumonia or worse for these guys... hence our neurotic behaviour around germ.**
In hindsight, I wonder if there is anything we could've done differently.  We could have waited to get the tube done in the morning, but that would mean that most likely Ryan wouldn't eat anything for more than 12 hours, which would run the risk of dehydration.  We'd have to drive downtown in rush hour to potentially a much busier ER.  We could have gone to North York to get it done, but since we haven't been there yet for a tube insertion we figured we'd play it safe with Sick Kids who were totally awesome last time.  I know that 'these things happen' in hospitals, but it doesn't make it any easier when 'these things happen' to your kid.  We work tirelessly to protect him and it's working.  To have something as avoidable as this potentially cause a major setback was just too much to think about.  This incident got me thinking a lot about how I handle situations like this, and yes, there is room for improvement but I don't know how to improve it.  I feel like I'm on very thin ice and with all these bumps/incidents/events that keep happening, I don't know when the ice is going to break.  The reason that it hasn't yet is because of all the people who keep everything else together while I focus on keeping myself together.  This happened when the house flooded.  My mom and Martine just cleaned and cleaned while I took care of the kids and tried to not explode.  Last night at Sick Kids, Scott just tried to stay calm.  All the literature says that I should be taking time to myself - meditating, doing yoga, going for walks, making plans with friends.  I invite these authors over (if they're healthy) to spend a day in our house and see how easy those things are to do.  I'm lucky - I do get to the gym a couple times a week, and I do get time to myself when I'm pumping or the kids are asleep - but I still don't feel calm or relaxed ever. One of the charge nurses told me about her niece who was born at 23 weeks and is now13 years old. She said that her sister 'took a breath' when the daughter turned 2.  So, August 13, 2014  (Ryan's 2 year corrected birthday) is set as my day to breathe.  Until then I'll just try to keep my ice in tact.