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).

My Guide to Helping Families with a Child in the Hospital

Before I continue our story I want to share more on how you can help. In the last few years between NICU, RSV/Adenovirus/Pneumonia stay, and this most recent round of hospital time, it has occurred to me most people don’t know how to help.

Most people ask “Let me know if I can do anything”, or “how can I help?”, but when you’re a frazzled parent with a kid in the hospital the answer to these is pretty much always “I don’t know”.

So how can you help and be more specific? (the local list)

1- Provide food!! There are lots of ways to do this. But remember hospital food sucks and is expensive. Ways to provide food vary widely: provide home cooked food, provide gift cards to places near hospital (bonus if they deliver), provide gift card for the REAL coffee place inside the hospital (at Children’s in CO this is Dazbog), pick up groceries, share those extra breakfast burritos you weren’t going to finish (seriously a neighbor did this for us and it provided 4 meals for Dad who was going back and forth). Food needs are just as important if not more so upon return home. We may have a full fridge but everything it has spoiled! My neighbors were awesome and set up a meal train (literally there’s a website called mealtrain.com that sets up the calendar and lets people sign up to bring you food). I had never really heard of this before and it has saved us big time with all our follow ups. Yea we had time to make it to the grocery store but not to actually cook.

A very lovely fresh meal! I feel so blessed after so many people have brought us home coked meals. This last one was from someone I had only met once and didn’t even realize was a neighbor!

2-Watch/care for pets. It’s always hard with a kid in the hospital to make sure your pets are fed and let out. Even if it’s the bare minimum – food, water, toilet – this is a huge help.

3-If the family has other kids, take them somewhere fun that’s not the hospital. Be it a sleepover with your kids, a movie, a park, anything – get them out and playing and show them they are still loved. My son may not have siblings but I do and I watched my cousin’s siblings go through some rough times while she was in the hospital. Getting siblings some fun time makes a world of difference.

4-Clean! One of the oddest things that never crosses my mind until I’m in the midst of it is how much we need a clean home when when get to be home! The piles of laundry, the musty smelling sheets, the filthy floor, the pile of dishes that are weeks old, etc. One neighbor came by while I got wee man down for nap and swept and vacuumed the whole house and finished up dishes I had started. Another neighbor sent over their 2 oldest kids after school and it was awesome. They mopped, cleaned toilets, helped fold laundry, cleaned a nose-print covered window, put away the now clean dishes, demolished my need to shred pile in the shredder, played with the wee man while I did a few chores they couldn’t, wiped down all our door knobs and light switches with disinfectant wipes, and all the while claimed it was more fun than the chores their mom gives them (seriously they are welcome back anytime!).

5- Visit us in the hospital – but bring goodies! What I really mean is we would love to see an adult that isn’t medical personnel, but we would also love a clean set of clothes, a treat for us parents, some socks, maybe a hairbrush and toothbrush. When we were in the hospital during the pneumonia stay our friends brought us one of those cube boxes full. It had a giant stuffed sloth for wee man, some magazines appropriate for both adults and wee man (Nat Geo, a cooking one, and some other adventure one), sweatpants that were big enough to fit either mom or dad, food snacks like apples and clementines, a few books for wee man (favorite is still Never Feed a Yeti Spaghetti), and the best part was the avoCATo fuzzy slippers with grippers on the bottom (still my favorite and I still take them to the hospital). The box itself was also fun and covered in sequence that you can brush with your hand to change how it looks. Super entertaining.

Sloth as big as wee man! Thanks friend! (PS – check out her blogs at PicklesAndUnicorns and LightningPickles)

So you’re not local, but want to help? What are other options?

DONATE! There are so many ways to donate that mean a lot to us families with kids in the hospital, even if it never reaches us directly. There is always the option to donate money directly but that’s not the only option.

You can donate food and supplies to programs like There With Care that provide families with food and supplies for their kid. So when we were in the NICU they provided not only weekly bags of food, but a “baby shower in a bag”(bag of items from clothes to toys to blankets and soap etc that one would typically get at their baby shower), a pack of diapers, a NEW car seat, and a NEW pack’n’play!

Children’s Hospitals are always in need of new coloring supplies and non-plush toys. These fill activity rooms and provide entertain for thousands of kids. Some even are gifted to the kids struggling so they have something new and special that is theirs.

Donate time! AKA – volunteer. I don’t think there is ever a shortage of volunteers – either at the hospitals or programs that help with transitions home.

Blood and Plasma! Yes this is life saving! Right now I know our Colorado Children’s Hospitals are in CRITICAL NEED. They need ALL blood types and plasma. 1 blood donation has the potential to help up to 5 children.

And of course FOOD! You don’t need to be local to help with food. Gift cards these days can be sent electronically and a lot of places that deliver can take orders online – so yes someone in Florida can have food delivered to a family in Colorado.

I’m sure there are other ways you can help a family with a child in the hospital. My biggest thing, is don’t ask a vague “how can I help” question. Instead be specific, and volunteer what you can do.

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….

November is Prematurity Awareness Month

Did you know approximately 1 in 10 babies is born too early (before 37 weeks)- just in the US?!

Did you know that being born too soon puts the child at risk for more health conditions than you can possibly count – from heart and lung issues to mental and learning disabilities to issues with learning how to walk or eat and everything in between?

Did you know there are babies who are born weighing less than two pounds?

Did you also know that if you’ve met my son, you’ve met one of these babies?

My son the day he was born. Yes he’s wrapped in Saran Wrap – it helps maintain his heat. And his eyes are covered to protect them from the light.

That’s right. My wee man was born weighing a whopping 940 grams at 26 weeks and 5 days. I learned pretty much everything I now know about preterm labor and NICUs and preemies while I was going through it. I was told I was at risk for preterm labor but no one really ever explained what this really meant.

This is an XXS Preemie diaper – it’s smaller than an expo marker but was still too big for my son.

And sure enough my wee man came early- but not for any of the reasons I was at risk. In other words we still don’t know why and many parents never do.

Depending on their child’s health many parents wait days, weeks, or even months just to hold their child for the first time. I was lucky and only waited 7 days but they were the longest 7 days of my life.

So why talk about this? It’s scary and many never need to know this information.

My son’s first bath. We kept him swaddled so he wouldn’t get cold. He’s still so small he fits in a “puke” bucket.
My son was almost 2 mo this old before he wore his first clothes. Even preemie sized was too big.

That’s exactly why. It’s SCARY AS FUCK and those of us who do need to know wish we did before it was happening.

I wish I knew more before it was happening so I could make better decisions (yea I know I did the best I could). I wish I knew before so I wasn’t trying to have to make these crazy important decisions about my child’s life while I was delirious and drugged and in pain. Or over the phone when I got a call from the NICU and wasn’t there to be with my baby. Or while I found myself in the OR at a different hospital than my baby.

Once he could regulate his temperature enough to not need to stay enclosed he got to see a mobile. He was very fascinated.

I wish I knew before I was handed a breast pump before meeting my child. Or before I basically made the decision to live in the hospital.

Going home! Depending on your baby’s weight you have to get a smaller car seat or even car bed to accommodate their tiny size.
These days he’s a mostly healthy, super active, always exploring 2 year old.

There is nothing easy about having a preemie. And No DEAR – no matter how miserable you feel while pregnant it is NOT worth having your baby early. So I hope some of this can help someone.

Thanks March of Dimes, NICU Helping Hands, Hand to Hold, Grahams Foundation, and all our doctors, nurses, and therapists that have gotten us here today.

Nightmare Come True (Part 4 and Final)

A temporary sigh of relief!

The breathing treatment worked and his stats are improving. He still requires high amounts of oxygen support but for the moment we are ok.

We still don’t know on the blood work. If it comes back not so great we are still getting transferred. If his breathing worsens again we are still looking at high flow and transferring.

I feel as if we are holding our breathe yet trying to breathe for him at the same time. Have you ever seen an over active 18 month old just roll over and pass out in the middle of the day while in the middle of conversation? …. I have. It’s scary.

Glowing toe! Pulse/ox

Still small enough for leg cuffs for blood pressure checks

…….

The hours tick by. He’s still doing relatively ok.

Finally the answer to blood work…. it’s normal. Thank goodness. For now we get stay put.

Goals

-get oxygen down to 1/2 liter or none

-get fever gone

-get the wee man to drink enough fluids to not require an IV

-no longer require the hospital grade suction from the wall – aka manage with a nose frida or a bulb syringe

…..

How to entertain an 18 month old in isolation- wagon rides back and forth in the room

Surprise visitors brought a wee man sized sloth!

Oxygen lasso while we test no O2 while awake

“If I can’t go outside can I at least look?!”

A couple surprise visits (including his primary NICU nurse) and a few days of lots of work and more breathing treatments we managed all the goals and got to home.

EZPap – not quite CPAP but similar. For a few minutes every few hours it forces air into the lungs to make them open and not close all the way when you breathe out …. and yea they hate this

Nightmare Come True (Part 3 of however many more it takes to tell the story)

Reality check. Nightmare was just beginning.

Second night in the hospital and little man’s oxygen stats drop and drop and don’t come back up. And this is already after having to wake him to get him a new IV.

We try increasing oxygen again and again and again but nothing, no improvement.

Doctor has been called and now we’re having the discussion about what happens next. About returning to high flow oxygen (oxygen with some pressure to help force lungs open), about being transferred to the main hospital, about going to ICU. Those three letters. The real nightmare. The fact we even have to discuss it is anything but ok.

……….

We have one more thing to try. If it doesn’t work – high flow. Also a blood test to see how his body is reacting. There’s a point at which the body reaches a guarantee it will need more support even if it is ok now. If this test shows he’s reached that point, even if we get him breathing better we will be transferred.

Holding our breathe.

Last attempt at a breathing treatment works. His stats start coming up. He’s still requiring extra oxygen but we’re ok for now.

Still holding our breathe on the blood test. We still don’t know if we’re really improving or if this is temporary.

To be continued…

Nightmare Come True (Part 2 of 3 … well maybe 4)

We didn’t make it to the next day.

Instead we ended up rushing ourselves to the closest Children’s Hospital ER. Not going to lie….I was flying through a construction zone at night. My little man could barely breathe and it sure as heck wasn’t getting better with the home medication.

It felt like forever getting into a room, waiting for a doctor. Sitting there and the monitor says he’s getting enough oxygen but I just know something isn’t right and he really can’t breathe.

FINALLY a doctor … and thank goodness she ordered an x-Ray of his lungs.

Pneumonia…

Black is air. White is bone or fluid

Damn that sucks. His lungs really aren’t up for tackling that.

At first the conversation was going home with antibiotics. The more we talked and the doctor got the full story, the more it became obvious he needed to stay.

At this point he’d have a fever for 14 days!!! He’s also not eating or drinking which means he’s getting more and more dehydrated every minute. Plus he’s a preemie – it doesn’t take much for things to go from bad to deadly.

A while back I shared a friends blog about how couldn’t go back. ( https://www.lifeafteryou.org/home/on-the-other-side-of-the-sanitizer ) That’s exactly what we’re doing. We’re going back. Back to living in a tiny room hooked up to cords and wires and oxygen.

For me this is more than just being in the hospital with my very sick son. This is reliving the NICU.

We make it through that night. Antibiotics and IV fluids started. Trust me when I say no on e wants to pin their child down for the things that you need to do to make them well….IVs, nasal suction, breathing treatments, etc.

The next day was another test. This time they swab is nose and send it off to see what grows. Tests for all sorts of viruses including the different flu strains and also a couple rare bacteria.

Comes back positive for RSV and Adenovirus. Both respiratory viruses that are extremely dangerous to those with weaker lungs and compromised immune systems. Both of which my preemie son have. RSV is so scary for preemies it’s literally something there’s extra precautions for and the main reason we keep our littles in bubbles and act like hermits when we get out of NICU. It can very easily kill a compromised child.

This….this is a preemie Mom’s nightmare.

To be continued…

Nightmare Come True (Part 1 of 2 maybe 3)

I’ve spent a lot time thinking and rewriting how I would share about this. How I would share about a nightmare come true. I wrote a draft basically telling everyone to F***ing wash their hands and cover their mouths. I wrote a draft that probably was a wee be too sciency for most.

Today we are home! Those words. We’ve said them before coming home from NICU. Doing a happy dance (yes literally) when we got told we’re going home.

Thank you Peanuts for teaching us how to Happy Dance

Yesterday we did that happy dance all over again.

On Valentine’s Day I got a call from my wee man’s child care provider he had a low fever and wouldn’t stop crying. After 6 days of a yo-yo fever and no other obvious symptoms I took him in to get checked out. Strep and flu negative but a bit of a red throat. Aka – no big deal probably just a little cold give it a few more days.

Sick and stealing cookies… can’t be that bad?

Next day urine reaks…I’m talking his pee only diaper smelled like the worst poopy one he’s had… REAKS. Ok so it must be a UTI.

Nope. Culture comes back negative and now he has a cough. 24 hours after cough develops its way worse and now sounds like wheezing too. To the ER

“Sounds like croup.” Treat for croup – responds – pediatrician agrees the following day.

In ER and yet he’s smiling

Now it’s Wednesday. Night before had been up and down. Morning ok. After nap little man sounds horrible. I’m thinking it’s the strider (sounds kinda like wheezing but more high pitched sound that comes with croup). Hot shower….still just standing there looking at me like he can barely breathe.

Pediatrician has an immediate opening so we head there and find out he’s actually wheezing. Thinking it’s just the virus effects on his preemie lungs. He responds to a couple nebulizer treatments and sounds and looks better. So we go home with the same medication for over night with plans to re-assess the following day.

Nebulizer at pediatrician
Playing while waiting to see if meds helped

Suction machine at pediatrician

Mom I don’t feel good

We never made it to the following day.

To be continued…