Not Admitted Doesn’t Equal No Hospital Time…And other coming home struggles

Last time we were admitted I meant to share about the aftermath….but I never did because well – life.

Time in the hospital always messes up life. The follow ups, the returning to “normal”, the figuring out where you left off, and the determining if “normal” will even exist again. (Ok it will eventually!)

This time around after we came home I had to coordinate 8 follow up appointments all as soon as possible. But it was Thanksgiving the next week. The way this worked out was that we went home, took a week off from being in the hospital and then ended up back 4 out of 5 days following the holidays!

We had to of course follow up with our regular pediatrician like always after being in the hospital (managed this before holiday at least ). We had to follow up with neurosurgery to figure out a plan of next steps. We had to follow up with urology to make sure we weren’t missing some possible problems the troubles in his spine could cause. This also meant we had to get more imaging done. Then there were some already scheduled follow ups that became even more important, including pulmonology and developmental pediatrics. We had to see a new department to help us continue to coordinate care between so many specialties in hospital called the special care team. And of course had to follow up with therapy (1 appointment at the hospital and several at home).

Children’s Hospital is very good at having different forms of entertainment. Here we got o see the 101st Army Band with the Colorado National Guard perform Christmas music! It was his first live music exposure and they were great about sharing their stories and engaging in his fascination for shiny things (the instruments) before their performance.

If you only look at the logistics of what happens after coming home it’s really not that bad. But being in the hospital messes up everyone’s sleep and eating schedule. The dogs were antsy from us being gone and therefore frequently in our faces. Wee man is traumatized and scared to death of sleeping – I believe because of the MRI’s where he had to wake with stranger and no parents. I am exhausted and overwhelmed as I imagine his dad is too. We all wish this was just some bad dream we’d wake up from.

After going through everything my poor wee man needs surgery. It’s big and scary to say your two year old needs surgery on his spinal cord. But I’m doing my best to remember that if all works out the way we hope it will alleviate a ton of pain; which in turn hopefully improve sleep and many other areas of life we struggle. A good majority of this could all be related to these complications with his spinal chord.

Making the best of the holidays.

Dealing with this around holidays is tricky. I literally forget that a holiday is coming. Plus I’m trying to catch up on my own health and appointments I had to reschedule while we were in the hospital. And of course wee man got a lovely cold and ear infection to top things off. We have to do everything we can to keep his lungs healthy, not just for his general health but also so can actually have the surgery he needs.

So the next month will be a crazy bit of chaos … and then hopefully we’ll return to that “normal” – maybe even improved in areas (sleep I hope). And then we’ll be back in the mountains and off adventuring as much as we can (big plans for the next year ;)). But if you think we’ve vanished, we’re just dealing with this chaos- and yea we probably need help with something (see blog My Guide to Helping Families with a Child in the Hospital).

Not Again…Part 2

After part one I got a lot of messages! Thank you so much everyone. Many of you stated you hoped things didn’t get worse. Well, from where I sit they didn’t…

We finally got to our MRI slot. I dreaded this. I was scared. I had been holding it together all day and I did end up loosing it. We had to ‘put my son to sleep” leave while he’s with total strangers and not see him until he was stable and awake- so he was going to wake up to complete strangers. Plus he already didn’t feel well and had a shitty day. Yup – this mom bawled her eyes out after leaving him with the MRI team.

My grandpa was on his way home from getting my grandma from the airport so they brought us some real food – this was amazing considering I hadn’t exactly had anything other than that instant oatmeal bowl and a few ER crackers all day.

After a long wait we were able to go back with him. He was completely out of it. The most peaceful, dead weight 2 year old you’ve ever seen. He needed that sleep (even if it was drugged) so badly. And then it was back to our ER room for more hurry up and wait. His dad needed to go home during this time, so I sat and tried to rest with mee man asleep in my arms.

I wasn’t really expecting what came next. A neurosurgeon came in to talk to us. And not about an infection. They found fluid build up in the spinal cord and something with the lower part of his brain. This doctor was honest at least that she really didn’t know what was going on and had to call her boss. The next couple hours included a bunch of confusion and disconnect between the neurosurgery and emergency doctors. We were told at one point if he ate and drank after waking from anesthesia and kept it down we would go home. And momma lion wakes up –

“What about his infection? What happened to the doctor in neurosurgery who had to call her boss? What did he say? What is wrong with my son?”

After asking a nurse 1001 questions we finally got both doctors back in and things sorted out. There was no way a kid who had spent 19+ hours in the emergency department in pain so bad he was either screaming or zoning out, needed to be transferred from another hospital by ambulance, have an emergent sedated MRI was going home.

It would be after 1 am before we got a room, but we finally were going to at least get some pain management and have a conversation the attending neurosurgeon and get a better idea of what was going on.

We spent a lot of time over the next several days trying to entertain a bored, trapped inside 2 year old while trying to keep his pain managed and figure out a pain plan that would work at home. During that time we spent a lot of time going back and forth with doctors who were going back and forth with other doctors trying to figure out what needed to be done and what was wrong. We ended up also doing ANOTHER MRI, this time of his brain, to get a better picture of what was going on.

At this point looking back, a lot of this is a blur. But here’s what we left with:

  • -Having spent 6 days in the hospital
  • -A diagnosis of hydromyelia (fluid in spinal cord), mild ventricularmeglia (mild fluid build up in brain), mild cerebral tonsillar ectopia/herniation (brain sitting too low on spine), suspected tethered spinal cord, and possible neurogenic bladder (bladder that doesn’t work quite right). That’s a lot.
  • -The need to coordinate 8, yes EIGHT, follow up appointments all to be done by the end of the first week of December.
  • -Knowing we man is probably going to be needing surgery in the very near future.

More to come…

The day we got to go home we happened to have an OT appointment scheduled in the sensory gym. It wasn’t the greatest session but we at least got to let him play and have some entertainment before the long drive home. Plus I got proof Daddy fits in the “house” wee man loves to hide in at therapy.

Not Again… Part 1

We didn’t fall off the face of the earth….but sadly we didn’t vanish because we were on some epic mountain adventure.

Quite the opposite. Spent the week living at Children’s Hospital. A place very quickly becoming another home away from home.

Friday afternoon wee man spiked a fever and started complaining about pain. He was falling asleep very unusually and randomly. By midnight he had hit 104 and by 4 am his pain was specifically in his back and by 5:39 am we were in the ER.

I quickly learned that back pain in young kids is the equivalent of chest pain in adults. It is not normal or good and often signals something truly wrong. Trying to be as nice as one can to a two year old while hunting down the cause we started by ruling out things that were simple to test for and treat – UTI and reoccurring pneumonia. Of course it wasn’t either of these. I’ve never seen a doctor so disappointed in negative test results.

Wee man kept falling asleep very randomly. Anyone who know him knows he normally take extreme measures of convincing to sleep at all.

My wee man was clearly in pain. He didn’t really want to move or play. He was still falling asleep randomly. At this point the doctor was very concerned about something rarely seen and often overlooked- an infection in the spine somewhere. You see all we know is his back hurts and he had a pretty reasonably high fever. He’s two – he’s not capable of telling us more specifically where it hurts. The fact that he’s narrowed it down to his back in and of itself is a really frickin big deal! We are talking about a kid who never complains about pain (even when he should).

So onto blood work. Cultures take 24-48 hrs to grow but could help narrow down the type of infection. CBC and CRP (C-Reactive Protein, an inflammatory marker) can give an answer to immediate severity of infection or even potentially rule it out. Well it didn’t. They were both elevated – a lot.

Insert here a freaking out mom’s rant about hand washing and kissing kids:

WASH YOUR DAMN HANDS (and your phones- seriously). DON’T KISS THE KIDS! This includes extended family unless you have permission. Teach your kids these basics too! Don’t hug and kiss others without permission – this also teaches them to respect boundaries! Teach your kids to wash their hands! It’s a fairly simple thing that can be fun. Soap and water doesn’t work – try hand sanitizer! There are actually studies that kids do a better job washing their hands with it anyways. But my point is still the same: WASH YOUR HANDS AND DON’T KISS PEOPLE!

-Frustrated Mom

Anyways….

At this point we now know a whopping two things – he definitely has an infection and his back hurts. It’s determined that to get proper care he needs to be transferred to a different hospital. We went to our closest Children’s Hospital but they are much smaller than the main campus. With his pain and safety concerns (potential for ripping out his IV) we made the decision to transport by ambulance.

At this point I feel like full on crazy secretary mode. His dad is out hunting, and though I’ve sent text updates I know he hasn’t received any of them, so I’m frantically trying to figure out how to reach him. At the same time I need my car to somehow make it to the different hospital. Oh and I forgot to eat breakfast – so getting that squeezed in is a must too. Luckily I thought to grab an instant oatmeal cup. I was also smart in the fact that I thought to pack a bag of basics….after all last time we ended up at the ER we were admitted.

Paramedics arrive – did you know they use car seats in ambulances whenever possible? I didn’t! They strap the car seat onto the gurney just like you would in your car using the seat belt installation method. I felt bad – I kept having to leave my son alone with strangers (nurses and hospital staff perfectly capable of watching him) while I ran back and forth to the car getting what we needed. At least I was able to grab his favorite car blanket and a couple of his toys.

I fully expected him to scream throughout the ambulance ride. Boy was I wrong. He thought it was awesome! They gave him a stuffed tiger (he got 2 just on this day!) and loved that he could easily see out the back windows of the rig. He could see some airplanes in the sky and there was another ambulance going to the same place behind us, which he thought was super cool to watch.

How cool to be able to see out the back windows so well?! And yes – definitely brought his weighted blanket in the ambulance! Thanks AMR EMS and Paramedics for the safe ride.

Somewhere in this chaos I managed to mass message my whole neighborhood looking for help, tell my mom, my grandparents, his dad’s mom, and our friend his dad was hunting with. Between everyone people teamed up to get my car to me at the main Children’s Hospital and get his dad on the phone with me and send him home from his hunting trip (which sucks).

Getting to the main hospital was a hurry up and wait game. We reviewed everything that had happened so far with the doctors there and determined they still agrees with the other doctor’s thoughts. Wee man needed an MRI. At his age it is impossible to sit perfectly still for 40-60 min so an MRI has to be sedated. This also means getting it scheduled requires 5x the amount of people. And because we didn’t know what was causing the infection they didn’t want to treat it until we had a better idea. So we spent several hours waiting…waiting for Dad to get there, waiting for my friends to arrive with my car, waiting for our slot to get him an MRI, waiting for potential answers. Waiting = lots of movies….or I should say lots of watching the same 3 movies over and over (Minions, Despicable Me 3, and Cars 3).

To be continued….

Last minute Hiking Mom and Baby Wish List (2018 list)

  • Socks! I love Swiftwick. They keep they feet dry better than any others I’ve ever tried. They have wool and non wool. My favorite are the Aspire in the 2 (https://amzn.to/2EjZKZg) height to keep debris out but not be too tall. The Hikers are my favorite wool ones.
  • Baby booties! I found these on Amazon for around $10 buy big so they last. Help keep little one’s feet warm (https://amzn.to/2rp6b4P)
  • Warm Hat! Carhart (https://amzn.to/2EiHUG5) makes great ones for the wee ones that stretch and are thick and warm. By far our favorite. For well I kinda like everything. Biggest thing is I want my ears covered so I tend to lean towards men’s or ones that I can unfold the fold up. I often just wear an ear band. I love shopping local and my favorites are all from Runner’s Roost Lakewood (https://runnersroostlakewood.com/).
  • Water bottles! Hydrapak (https://amzn.to/2L1DjZz)makes my favorite soft flasks with bite valves. They come as small as 10 mL (https://amzn.to/2Uu6VmL)for the little ones (makes a great sippy bottle) and in a bunch of other sizes. Some even have straws (https://amzn.to/2UmFFq2).
  • Whistle. Everyone should carry and emergency whistle. They are cheap and effective and have many uses(https://amzn.to/2EbXRx9)
  • Bear bell. Again cheap effective and everyone should have. I have one on each of packs and each dog.(https://amzn.to/2UpUnN1)

Happy Holidays!