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).

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