8.08.2013

Tips for an Extended Hospital Stay with Your Six Year Old


I thought using the term 'surviving' an extended stay at Seattle Children's hospital would be a misleading title on two fronts.  For one, Seattle Children's is a wonderful hospital, I'd hate to give any impression to the contrary; and two, my son's issue was not immediately life threatening - 'surviving' seemed too dramatic a word.  Long story short, his ureter (the tube goin' out of your kidney toward the bladder) was getting squished by a blood vessel and causing his kidney to become inflamed (hydronephrosis).  It's something that he grew out of when he was very small, but I suppose that the pesky blood vessel started growing again in an inconvenient way.  OK, so, since we now know the backstory, and how things went down - here are some handy tips and totally hilarious and heartbreaking pictures that I have to share of my brave little guy.  


Oh yes, we've added a hammerhead and bull shark to his collection - as well as this one that GLOWS


Take care of yourself, so that you can take care of your kid.  I was clearly not the parent to be with my son going on two hours of sleep after Ragnar.  I was quite the sight walking into the ER donning my pink shorts and neon orange compression socks looking like a weepy deer in the headlights.  The staff are amazing and, after chatting with me, led me to the restroom so I could compose myself.  They also tried to give me some Gatorade after I explained what I'd been up to over the previous 36 hours.  Once I spent some time with my family and talked to the doctors, I took my daughter home so that I could get some much needed sleep and my husband could focus on my son.  Then, over the course of our five day stint, we would take turns staying overnight on the convertible sofa in the hospital room so that we could each recharge and be at our best for my son (and not want to throttle him after so much togetherness, either).  It probably goes without saying, but pack like you did when you were birthin' them - bring comfy pjs, a pillow, snacks, toiletries, etc. etc. 

Suck it up, buttercup.  Yeah, I was most certainly taken aback seeing my kid hooked up to an IV and in pain.  It took everything in me not to break down into a blubbering mess.  But I knew I needed that time in the bathroom before seeing him to pull myself together, and there would be several other times that I had to just step out of the room and cry.  My boy never once seemed scared and I think it's good to remember that most kids his age don't have a real frame of reference for being in the hospital.  As far as he knows, it's just a place where people go to get better.  Most of the credit here goes to the amazing nurses who make them feel so at ease, while being firm and completely transparent when they explaining things.  He was suuuper impressed that a 'robot' was going to go into his 'tummy' and fix it!  


And hospitals are places with magician clowns that can pull things out of your ears, naturally.
It's kind of like being on 'island time' in the hospital, be prepared to wait, and wait, and wait some more...  Most of us moms remember our own hospital stays for the birth of our children and this experience wasn't much different as far as how timely things happen.  "The lab tech should come by in twenty minutes for bloodwork" translates to about an hour.  "We should know by tomorrow morning" means, by the afternoon or evening.  Now, this wasn't always the case, but it was more the norm than not.  We were admitted on Saturday and were supposed to get on the schedule to get him a stent to ease the blockage in his ureter by Sunday afternoon, and we'd hear something by Sunday morning.  Aaaaaand, by Sunday late afternoon it was conveyed that we were lost in the shuffle.  So we rescheduled for Monday, but put a request in for the 'permanent fix' surgery if it was possible (where they would take out the portion of the ureter that was blocked and put it back together).  Of course this became a possibility on Monday and then we were scheduled for Tuesday; for those counting, that's three nights in the hospital without any surgery happening.  Which also translated to: don't eat, now you can eat, don't eat, now you can eat, etc.  Poor little guy's tummy was ALL out of whack.  Which brings me to...


Goofy stuffed mouth smile, mmmm...  Jimmy Johns


Bring some favorite foods and scope out food choices nearby.  Each time he was given the green light to eat, he wanted Jimmy Johns (we taught him right).  So, thankfully, there's one near Children's.  Although, we would have driven an hour to get him a slim #4 with cheese.  And I didn't have to drive far to discover and devour Veggie Grill.  In hindsight, I'd have brought more foods from home that would make him happy.  But toys? Oh yeah, we were alllll over that...


Methodically putting his Legos together


Coloring books, sticker books, books for reading, and most importantly, LEGO MINIFUGRE SETS are your friends.  Or, you know, whatever your kid is into: Polly Pockets, Star Wars action figures, etc.  After a particularly trying moment where we had to have several nurses help get a blood sample (yeah, one of those moments where I had to leave the room and go cry afterwards), they offered up a Lego toy for being so brave - a little minifigure car set.  He spent a nice quiet half an hour building his car and then another half an hour playing with it.  Most people that know my son know that he's the active type, to say the least.  I need to get him out and run him like a lab most every day to keep the cranky away.  Not a bad thing, for sure, but it's bad when stuck in a hospital room for five days.  Legos didn't occur to me, because we have such vast quantities at home and they just seemed to unwieldy.  Enter the minifigure sets!  After that, on my morning 'off' my daughter and I picked out three more boxes at Target to give him one per day.  But, his inner lab still needed to be appeased...


Ermagherd, sloooow DOWN - pic is blurry because he's haulin'
and we found some Seafair Pirates on one of our walks!

Don't be afraid to walk, walk, walk, and walk some more if they're hooked up to an IV cart.  Every day we went on epic walks around the hospital.  I feel like I know every nook and cranny, every elevator bank, every fish tank, every Starbucks, and every play place.  Yes, Seattle Children's has a totally awesomesauce playground and playroom that we'd visit at least twice a day.  Not only do they have stuff for the kids to play with (train tables, play kitchens, pool table and xbox for the older set) but shelves full of DVDs, books and toys for the kids to take back to the rooms.  We had quite the menagerie of dinosaurs going in our little corner of the hospital, as well as a few movies (yes, it's inevitable) and some new fun books to read.  


on the playground
working on one of many art projects/crafts


Try to make life as normal as possible for both kids (if you have more than one).  It was really hard to keep a semblance of normalcy for baby girl.  Naptime went out the window for her because that was usually the best time for us all to be together.  Usually we'd wake up in the morning, touch base with each other and then get through lunch with whichever child we had slept with the night before and then be together at the hospital after lunchtime until just before dinner.  So, we kept the pre-hospital time as normal as possible for her with trips to our usual parks, the Children's Museum or the Zoo.  Yeah!  We finally caved to a zoo membership.  As for my son, we tried to hit the playroom just after breakfast and some morning cartoons, and did our usual bedtime routines (bending the rules, of course, and doing three or four books instead of the usual two) even if that ended up being two hours later than normal.  


checking out the toys at the hospital playground


Bring an extra large shopping bag or extra duffel bag for all of the crap you will accumulate.  All those art projects, Legos, stuffed animals purchased at the gift shop (like the aforementioned hammerhead and bull shark - we also lucked out that our Children's Hospital is themed after sea life), and medicine take up SPACE.


This is mainly motrin and acitaminophen - we're set for a few years.
being sprung from this joint! good thing we had a wagon for all of our sh*t


We finally did have that surgery, the big laparoscopic fix on Tuesday evening and, rather than going home in the evening the next day, they had us stay until Thursday morning.  Those last two days were quite the opposite of the first three, in that I was trying to get him to take walks and be active.  He was still foggy from being sedated, hopped up on painkillers and naturally his muscles hurt where the three little incisions went for the 'robot.'  It was really tempting to sit with a book and let him snooze.  But tempting him with walks to Starbucks for a smoothie, or a cup of whipped cream (yes, the baristas would make a tall cold cup filled with whip and then top it with caramel and/or chocolate sauce for the kids) was just the ticket.  I am not above bribery.

I vividly remember seeing the families with kids in scrubs as I'd go for routine ultrasounds and clinic visits when my son was tiny.  I couldn't imagine being one of those families holding a pager as my baby was whisked off to surgery.  Being on the other side of things, I know that it is not the end of the world for the majority of families and that these kids will be on their feet before you know it.  I probably should have focused more upon the faces of the children (which can be hard) than those of the parents at Children's.  Every single kid there is a superhero, it us adults that are sniveling piles of jello.  


Yeah, remember this?  I really handled his first day of Kindergarten well...













2 comments:

  1. Great post. As a nurse whose worked Pediatrics many times and for many years in the past I think everything you mentioned is very important. Thanks for writing this and I may share with patients in the future.:)

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  2. Ahh, man rough week. Love that you shared this all with us! Hospitals are no fun, but Childrens look pretty good if you have to be there.

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