Children’s Hospital Colorado

We are back! Well, we have been back for a few weeks now, but I am finally getting around to telling you all about our trip to Children’s Hospital Colorado. It was unexpected to say the least, but also completely predictable in our storyline.

Death of a Computer

Who had money on an unforeseen catastrophe before the plane even took off to start our trip? Well, if you did, you win – a frowny face sticker. I thought I planned for everything on our trip to Colorado for medical answers. Jokes on me. Before even boarding the plane to Denver one of Ellie’s bottles of formula somehow spilled in my backpack that also had my computer.

As I frantically pulled paper towels from the airport bathroom just out of security to try and mop up the sticky mess of formula that has dripped and pooled everywhere in my backpack and was dripping out of all the ports of my computer, I about lost it – and maybe did just a bit.

Thanks for my husband who realized it wasn’t the time to mention carrying formula and a computer in the same bag wasn’t the brightest of moves. At the time the computer turned on, so I still had hope. Unfortunately, we learned that night at the hotel that my computer had bit the dust and would no longer turn on.

I took my computer in to the computer doctor when we got home, and he worked some magic with his favorite Sponge Bob toothbrush (it’s what he said) and only one replacement part. Who knew a “daughter board” could cause so many problems – it seems fitting.

Flying to Colorado

Ellie did amazing traveling! She had picked out her backpack and small suitcase to take on the trip and was NOT going to let those out of her sight. As was to be expected, her daddy and I did get to carry these cute bags through the airport eventually. Everyone should have such cute travel accessories!

Thankfully we made it through security with her formula okay (other than the spilling incident) and made it to our gate. Unfortunately, even with arriving with plenty of extra time to make it through security, we ended up needing all that time. Then didn’t have time for her bottle to fully heat up with the bottle warmer before we had to get on the plane.

Getting Ellie to drink a lukewarm bottle on the plane while people finished boarding and they closed the plane was such a big accomplishment for us! This is something that she wouldn’t have done before. She was hesitant – but drink it she did. The next couple days she wasn’t very trusting of her bottle and didn’t want it to “feel funny.”

Flying back home she was once again willing to drink a bottle in the airport using the portable warmer, granted we had enough time to heat the bottle correctly this time, but I still count this all as a success in Ellie’s first airplane travel experience.

Fantastic Hotel

A huge win on this trip was our hotel. Right across from the start of the medical campus, a park, a retention pond filled with geese, and two different construction sites within viewing distance – there was never a lack of entertainment out our window.  We also appreciated the beautiful sunsets every night following the quick storms blowing through. This felt like a vacation!

The hotel room was just what we needed with the separate bedroom and kitchen. It was perfect for a week’s stay, plus it had a complimentary breakfast – we ate the oatmeal – how exciting are we?!

In the kitchen I was able to prepare many food options for Ellie. Noodles, salmon, a variety of fruits, seed and nut cookies and more were all offered and (mostly) enjoyed by Ellie.

I feel bad for cooking Ellie’s salmon in the room. Even with the exhaust fan running, I KNOW rooms around us probably had to endure that smell for a few minutes. *gag*

Thanks to all the food variety, and most importantly the POOL, Ellie loved her stay at the hotel and still asks if we can go back. Knowing that she held on to the parts of the trip that she loved and didn’t focus on all the appointments, procedures, and throwing up all night (I’ll get there) – this makes me happy.

Children’s Hospital Colorado

Another positive of the trip was our experience with Children’s Hospital Colorado Anschutz Medical Campus. Some of the many things we loved about this stand-out hospital:

-We were greeted with a personalized welcome tour-guide, from which Ellie received an adorable stuffed animal. I really appreciated being shown each location in the hospital we would be visiting in the following days, but the purple fish with a giant sparkly tail was fun too.

-Ellie was able to visit the kids radio studio in the hospital and got, yes, another stuffed animal – Ellie thought that was a pretty fun place.

-Ellie, my husband, and I all enjoyed the fun sculptures inside the hospital and out: child friendly art and an all-around family focused and child friendly design.

-The multi-disciplinary clinic where we were able to see four people with one visit was fantastic. Not only is it a time saver, but it is also wonderful to have four different team members consulting with each other on your child’s case. To not have to be the go-between amongst all the members on Ellie’s care team or having to wait for the team to talk with one another – I have no words. Every medical team should be set up this way.

-Most importantly, everyone we encountered was so kind and talked to Ellie. Not just above and about her – to her. Thank you to everyone there for that. It means the world to parents to know their child is seen and cared for.

Procedures

As per Ellie’s usual (at least she stuck with some rules this trip), she went all out on her extreme dehydration the day of the procedures. This was thanks to her throwing up all night with the clean out prep combined with her refusal to sip on water or anything the day before.

We were able to get some extra IV fluids in her and she turned around quickly following the procedure. She tolerated her formula in small amounts right away and was able to build from there. All was right in Ellie’s world as she snuggled her new giant teddy bear for an afternoon nap in the hotel room.

The cutest thing about the procedure was when Ellie woke up from anesthesia, she was trying to lean over towards the nurse. We all thought she was going to be sick or was really confused and trying to get out of bed. Nope, this sweet and spunky girl leaned over to kiss the nurse’s arm. Sweetest. Thing. Ever. The nurse was really surprised and said that was the nicest way a three-year-old has ever woken up from anesthesia. Needless to say, she was wrapped tightly around Ellie’s finger for the rest of the time she was working with us. You go Ellie!

Answers?

I know the question burning in your mind is, “Well, did you get answers?” I don’t really know how to answer that – hence the avoidance so far. We went specifically to this hospital, to speak with these very intelligent physicians, in hopes of finding the directions to our Ellie puzzle. Essentially, we came back with no more answers than when we left.

Ellie ate her assortment of foods and even seemed like she was going to start reacting to foods our first night there. However, her body defied playing by the ‘rules’ yet again. I mean, these are even the made-up, special, Ellie-only-rules. Her body still said, “Nope, I refuse to play like that THIS week.”

We went ahead with the procedures and tests and confirmed that yes indeed, her body wasn’t reacting as it had previously. At least we have a baseline now? After enduring the preparation for her endoscopy and colonoscopy this seemed like very little in return.

What we did learn

I am not going to say that this was the life-changing breakthrough that we were hoping for from this trip. However, thanks to trying a couple handfuls of different foods on this trip, we returned with more food variety to offer Ellie.

Ellie’s registered dietician at home has mentioned the possibility that it is perhaps too hard on Ellie’s body to be exposed to only one food at a time. Her body has so much exposure to only that one food, that it begins reacting to that food. This would explain the loss of some of Ellie’s foods after a few months of them being safe.

With her new assortment of food options, I am hoping and praying that it will be easier for her body to maintain the same safe foods.

Some of the foods that Ellie gets to eat right now are blueberries, strawberries, bananas, cashews, chickpeas, safflower oil, sea salt, sugar (it’s in her formula, so it was an assumed safe), millet, and even tiny bits of Greek yogurt. The food possibilities with these options are astounding compared to where we were before the trip. Ellie is loving it!

Reaction at home

This is another part of the story I just don’t want to talk about, so pardon me if I just summarize it for you. Two days after returning home, Ellie showed signs of reaction to food. From not wanting to eat, up all night with a “hurt tummy,” to blood in her stool. It was all there – two days too late.

Since we are doing an assortment of foods now, it makes it nearly impossible to figure out for sure what the culprit is. We did our best guess based on what Ellie was refusing to eat that she had loved on the trip: salmon and “diamond cookies.” The salmon wasn’t a surprise, expected even. The cookies on the other hand are a shot in the dark. I’m guessing it was the sunflower seed in the cookies that was the culprit as well, but it’s hard to say.

Since we have taken those foods out, she is doing better some days. It is just so hard to figure out. Please don’t ask me – the answer right now is “I don’t know.” We are still talking with Children’s Hospital Colorado, as well as our team at home. We haven’t given up, but it sure feels like we’ve been pushed down a few times.

Aurora is for the Food

Now that the dreaded “update” is out of the way I can tell you that Aurora, CO, has some delicious food! Ellie was thrilled with all her food options, and my husband and I had more mini dates over take-out meals from restaurants than we have had in years. Some things I highly recommend are the blueberry pesto sandwich and sweet potato curry soup from Modern Markey Eatery, the braised pork belly rice bowl from Chi Lin Asian Eatery, and the lemon poppy seed ice cream from The Sweet Cow Creamery. Mmmm.

Now that we are back at home and I have been up to my eyeballs in produce from our garden for a few weeks, we are trying out our own culinary creations. Ellie loves “helping” to pick produce in the garden and frequently asks to try what we make in the kitchen. Even with all of Ellie’s food options, we are still having to say, “You can try this hopefully soon, but not just yet.” Frequently in response to that now Ellie says, “I miss the hotel where I could eat the food I wanted.”

Same sweetie, same. *Cheers* to Colorado and their delicious food.