Child Life Specialist and a Denver date

The number of times I have sat down to write this update and then just stared at the blank page is almost laughable. What I thought was going to be a simple update of knowing a date for Denver has been packed full of another hospital stay (made easier by child life specialist), a sunflower oil and seed food trial, and finally – a confirmed date for Denver! This roller coaster has me exhausted.

Family Balance

I do my best to keep our family healthy, but man there are so many germs out there! With Rosie in kindergarten – even with all our precautions – I think we saw a good number of those germs come through our home. Do I know that she worries about her sister, especially when Ellie is sick? ABSOLUTELY! I am trying daily to find a balance of what is too much for my sensitive older child and what is necessary for my medically challenging younger daughter. Am I glad I have a therapist that I can talk to exhaustively about ALL of this – 100% YES!

This past year my husband and I decided it was important for Rosie to be able to attend kindergarten as well as try a ballet class, which she had been asking to do for a while. She needed to be able to escape the “Ellie bubble.” I am so glad we made that decision, as it allowed her many experiences that are important for her development, mental health, and because she’s a kid! However, because of this, Ellie has unfortunately gotten sick a few times from germs that were unknowingly shared between the girls before figuring out Rosie was sick.

Back to the ER

Thankfully, a couple of the illnesses Ellie was able to weather out at home since they were very mild colds, so no medications or rehydration was needed from the ER. Halleluiah! Unfortunately, we were just really missing the whole hospital experience too much, so we did go visit for a four-day stay at our local children’s hospital for a recent illness. *Sarcasm for the win. *

The admission was thanks to severe dehydration from constant vomiting. This is the type of illness that really takes Ellie down-and-out. Since she only has her formula, water and millet flour, there isn’t a good way to rehydrate her or settle her stomach during GI illnesses.

I know I need to take Ellie to the ER for hydration sooner than your average 3-year-old with a tummy bug. During the first few ER visits when Ellie was younger, the medical staff doubted and questioned Ellie’s history, care plan, my verbal accounts of her symptoms and what I knew would happen if we were sent home to “wait it out” – we would be back and in even worse condition.

Be An Advocate

As I have mentioned before, it is so important to be your child’s advocate, even when it is such a challenge because you are questioned and doubted by those who are supposed to help you find answers. Well let me tell you, every one of those previous visits ended with a doctor surprised by Ellie’s lab results, and then admitting her to get rehydrated with IV fluids. I would also like to believe the medical staff became a bit more knowledgeable about FPIES each time. Wishful thinking? Maybe, but then again maybe not, because THIS ER visit, I didn’t have to convince, educate, or plea. This felt like a win in my overly exhausted brain. Labs were drawn, fluids started, severe dehydration confirmed, and we were admitted.

Another hospital admission

We were hoping for a brief 24 hour or less admission, just to get Ellie rehydrated. This is not how Ellie operates, however. She has her own script she is reading from and we never know which plot twist is in the works.

This visit wasn’t too surprising when she wouldn’t drink her formula for a couple days, it is to be expected when she has thrown up. She doesn’t trust her formula and blames it for making her feel sick. Poor girl. I was very thankful to be in the hospital where she could continue to get hydrated through IV fluids, it takes so much stress away.

Is it weird that it is a relief to be in the hospital with my child? Maybe. But I am also very familiar with a hospital pediatric floor, since I used to work on one, so perhaps that takes many of “scaries” away for me and just offers reassurance of help and support. This admission took a few days of patience, lots of encouragement, and a couple fantastic nurses willing to make up games to get Ellie to drink sips of water.

After a few days getting rehydrated and her stomach getting back closer to her normal, Ellie was able to slowly start taking some formula. After some consistency with her willingness to drink, we were able to return home for her to continue to recover.

Child life Specialist

I want to take a brief minute to acknowledge the Child Life Specialist role in a children’s hospital. From providing kiddo-friendly and age-appropriate explanations and reassurances about procedures and tests, to the MANY distractions they offer – they are a life saver!

Yes, as a parent, and additionally as a pediatric nurse myself, I can provide reassurances and comfort and distractions. However, when a Child Life Specialist comes in, they bring a whole different ballgame of NEW distractions tailored specifically for each area of the hospital. With previous ER and hospital visits, we had primarily utilized the child life specialist services in the ER for IV starts etc. But during this hospital stay we benefitted from their many distractions and activity options available on the pediatric floor, as well. From scavenger hunts to sticker pages, books, and art activities, Ellie’s hospital stay was greatly improved thanks to the wonderful role of the Child Life Specialist.

Thank you to any Child Life Specialist out there, we appreciate you!!!

Denver Date Booked

A couple days after returning home from the hospital, I was finally able to confirm a week to be in Denver, as well as a relative plan with the team of doctors and specialists Ellie will be seeing while we are there. The week of July 17^th, we will start our week stay and hope and pray they are able to provide some answers!

Some members of the team Ellie will see first are the lead pediatric allergist, the lead pediatric gastroenterologist, an eating therapist, and a registered dietician. Yes, we have already consulted and worked with all these specialties, but we are getting some fresh eyes on Ellie’s not-so-typical case.

We will then give her a food that we know has previously caused her to react and pray that she has a timely and significant reaction. This goes against everything we have been doing so far to keep her from reacting, but the doctors want her to be reacting while the procedures and tests are performed on her. This will give them a better understanding of what is happening inside that cute-but-difficult little body of hers.

What food to choose?

You all would probably laugh at how much thought and stress I have put into what food I am going to have her eat to make sure she reacts in time. You may be thinking, “Well doesn’t she react to every food? That should be the easiest things to do, just feed her any of the multiple foods she has failed so far.”

Yes, you would be correct, she has reacted in some way and time to everything. However, the length and severity of her reactions differs. I want to pick the food that I feel will provide the best answers and not a food that eventually her body gave up on after a few months of accepting it. This is the oddity of her body versus the typical FPIES, she isn’t gradually accepting more foods and eventually growing out of this disease as she ought to.

Salmon or Cookie?

After much deliberation I have settled (I think) on salmon for her trial food. I am going to take some frozen Alaskan salmon (thanks again Mom and Dad) in our luggage, so I know it hasn’t been processed with any other foods. Also, Alaskan salmon is the salmon she had previously failed rather quickly and significantly. I am hoping, although I hate to see her react, that she will react again to salmon. Wouldn’t it just fit Ellie’s story if, suddenly, her body decides it is totally okay with salmon? This is my fear.

I have been joking with my husband that if that happens, I’ll just go buy her a cookie from a bakery and let her eat that as it’s bound to have several things in it that cause her to react.

In all seriousness though, I am taking a few back up options. Foods I know she has eagerly eaten previously but then reacted to such as olive oil, millet noodles, chickpeas, olives, and who knows what else. It might just become a smorgasbord – I’ll have to ask what the doctors would prefer us to do.

Falling into place

This is where I am going to tell you about all the positive things that happened while booking our Denver trip and not focus on the hours on the phone, the many phone calls and follow up phone calls, and the persistence I had to have to get this trip booked. Okay, I guess I mentioned that, too, but it had to be said. Shoutout to Emily who helped connect us with the right people to get this slow ball rolling, thanks again!

Once we were scheduled for a date, we were sent an email from the hospital about the surrounding area. Hotels, things to do, expectations, places to eat, etc, were all included in the thorough information packet included. Not being familiar with that part of Colorado, I was very thankful for this as it gave me a starting point.

Since Ellie is allergic to dogs and we also need the ability to cook food for her to trial, I thought it was going to be impossible to find a place to stay. After looking at many hotels and home rentals, we found a fantastic option right across from the hospital! Extra special happy bonus points for there being a coffee shop a block over and on the way to the hospital. It’s the little things.

Hotel of service

Yes, this hotel is pet friendly BUT they keep the pets on the lower floor, and it is a brand-spanking-new hotel, so the likelihood of having had dogs in the room they will put us in is very low. They were able to list our room as an “allergy friendly room” and put us on one of the top floors away from any potential dogs.

This hotel has a suite option that has a separate bedroom and a small kitchen, bonus win for not having to go to bed at 7 every night with Ellie. (Wait, is that a bonus? Can I still have that option?!)

When I asked about the possibility of making sure the kitchen is clean of all food, they graciously said that housekeeping would be available to clean further if needed, as well as the ability to leave cleaning supplies if I would be more comfortable cleaning it myself. This is service and understanding on a level I greatly appreciate.

They also said that since we are staying at the hotel for medical reasons, they understand the possibility of dates of stay changing and they are willing to work with us on that if the need arises. This hotel gets it.

Plus, they have a pool, so if we can find some time that it isn’t busy – Ellie is going to be THRILLED!

My husband was also able to book a fantastic deal on a car so we will be able to drive around as needed. This is not as exciting as the hotel, but it does offer a slice of relief.

Airplane flight and TSA

We were able to book a direct flight to Denver that falls perfectly between two of Ellies bottles. She will still need a bottle in the airport, which may or may not be very successful with lots of people around, but at least it won’t be on a plane. A bottle warmer has been purchased, I confirmed with TSA about bringing bottles of formula on the plane, and a note from her doctor has been written.

TSA also suggested doing Pre-Check for my husband and I to expedite the process with the formula, done and done. Apparently, we can still expect a pat down, but maybe they will give me a massage while they are at it. “I have a knot just a little to the left of my shoulder if you wouldn’t mind…” As long as they let us bring Ellie’s needed formula, I will follow all their rules and jump through any hoop – to some extent, I’m not an acrobat.

Sunflower Seed Trial

While we were waiting for the middle of July, we conferred with some of Ellie’s team, and they agreed we may as well trial a food while we were waiting since Ellie was asking to eat all the time after recovering from her GI illness.

Sunflower oil and sunflower seeds were the winner. We started with sunflower oil, which I precooked just to be safe, prior to using it to bake her millet crackers. She didn’t love the sunflower oil and since we couldn’t get her to eat much of it, we switched to sunflower seeds.

It took a bit of searching to find raw sunflower kernels that didn’t come with an allergy warning of “processed on the same equipment as peanuts.” Since Ellie has a true IgE allergy to peanuts, those a no-go for our family. Find them we did – finally – at Trader Joe’s. TJ frequently comes through for our allergy needs, love that place. Also, I should have just started there. Sometimes I feel like I purposefully try to make things harder on myself.

Okay, back to these seeds. Because everything must be cooked for Ellie to pass the food, I roasted the seeds myself with sunflower oil and sea salt. These are delicious. Ellie thought so, too, and was thrilled to have a snack. She was really excited when I then proceeded to take some of the roasted sunflower seeds to make sunflower butter for her.

Sunflower butter for Ellie

Sunflower butter isn’t anything new in our home. My husband loves the stuff. I am more of a cashew butter and almond butter girl, but that may be because I ate SO much of the sunflower butter when I was eliminating foods from my diet to try to help Ellie way back when.

Anyway, I’m not sure why I never made it myself, but with some toasted seeds, a small food processor we have dedicated just for Ellie’s food and a touch more of the cooked sunflower oil – voila, seed butter! Ellie was excited to share a snack with Daddy and he eagerly enjoyed trialing her sunflower butter with her.

I have already kept you here so long that I am going to summarize the results. After a few weeks of pushing through, because I wanted to be absolutely certain, we finally called it a fail on the sunflower seeds and oil. Huge bummer and letdown for us all. For some reason, maybe because I knew we had our trip booked, I had been confident that this trial was going to be a success for Ellie. When I finally had all the evidence needed (not wanting to eat, not sleeping, cranky, stomach pain, blood in her poop, etc…) and called an end to the trial, it was hard. How is this food a fail, too?!

However, this trail was not a complete loss. Now I am regularly making sunflower butter for our house (just not Ellie) with Trader Joe’s roasted sunflower seeds. I guess my husband considers that part a win.

Are we there yet?

If anyone else just had the song “Are we There Yet” off ‘Traffic Jams’ by Joe Scruggs pop into your head – we were raised the same way. Now rock out to “Goo Goo Ga Ga,” that will take you back. For those of you who now have Cocomelon “Are we There Yet” as your mental soundtrack, I’m sorry and I feel your pain.

Okay, after that little side note, sorry for the long update. Apparently once I started, I just had so many thoughts to share. I hope you were able to sit and relax for a bit and enjoy a tasty hot or cold beverage while reading.

You are caught up now. We are just letting Ellie recover from the sunflower seed trial and hoping and praying that it didn’t take her millet flour down with it. Denver is not too far away, and hopefully I will be able to share any updates following that appointment. We are as ready as we can be and the girls (Rosie will be staying home with grandparents) have little surprises purchased for each day to get them both through the stress of the week.

Wish us luck and send prayers! Hopefully we will be returning with answers.