Visit 7

Oh visit 7… where do I even begin?!

We were actually unsure if we would be able to make this appointment. 

As some people may know, Luca cannot do his treatment when he is sick. Eating foods he is allergic to is already a lot on his immune system and doing it on top of his immune system already fighting off an illness carries the potential for allergic reactions. Due to this, we always add a couple weeks to our cycles so that we have plenty of “sick days.” Otherwise, we risk having to miss our appointments and having his treatment get delayed waiting to reschedule. Not to mention, the financial repercussions when you have to rearrange your travel plans. 

Well, not unlike every other family this winter, our house has been hit hard with sickness. It seems like every couple weeks we’re dealing with something new. The last few times Luca has gotten sick, he’s gotten really sick. In January, Luca went to bed with a mild cough and woke up soon after with that barky, croupy sounding cough I have come to dread hearing. He got worse and we took him into the ER. He declined rapidly. They gave him a steroid and Luca ended up needing several Racemic Epi breathing treatments. He continued to decline and was put on high flow oxygen and transferred to the PICU. He was so sick, and it was terrifying to see him struggle to breath. 

But in true Luca fashion, his strong little body pulled through quickly and he was able to be transferred to a stepdown unit later that night and was discharged the next day. 

Luca skipped his food allergy treatment for a few days, and had to slowly build back up to the doses he was on prior to getting sick. It put us several days behind with treatment but thankfully, The Food Allergy institute was able to slightly modify a part of his plan so that we did not have to reschedule our appointment. 

Luca usually has 3 appointment days so the trips are 5 days long, with travel time. We are getting closer to the end though, so this time he only needed 2 appointment days. We switched up our routine a bit this last trip. We got a hotel in our favorite little area, Seal Beach. We flew into LAX instead of Orange County. And instead of grocery shopping and making all our meals in an Air BnB, we visited the couple safe restaurants Luca could eat at!

On appointment day one Luca challenged cow yogurt, hen egg white, and escalated his pistachio dose. He passed cow yogurt and now that has been added to his daily morning maintenance. After escalating pistachio, the dose will continue to increase every couple weeks this cycle and Luca will challenge it (and hopefully pass it) at our next appointment. This is an anaphylactic allergen for Luca so the process is slower. He currently is up to ¾ of a tsp of crushed pistachio daily though, which is wild!

Luca also cleared hen egg white, so it is now safe for Luca to eat eggs!!!

Unfortunately, Luca hates eggs. I’ll admit, it’s a definite bummer that after years of avoiding eggs, and the last year of tirelessly prepping different egg yolks and whites, to find that he doesn’t like them. He has to eat at least 16 ml of egg whites every day and 10 ml of yolks 3x per week for now, to maintain his tolerance. We’re having to get creative to get him to eat his eggs every morning but I’m hoping that once he reaches a point in treatment of only having to eat them a couple times a week, he will grow to like them. 

Regardless, to have one less food to avoid and worry about is HUGE. And so very worth it to know he is safer. It’s been years of avoiding so many things, and now to look at all 3 of my kids eating scrambled eggs and strawberry yogurt for breakfast, two things we never even used to keep in our house, gives me such peace.

California was unusually rainy this past trip so after the appointment we headed to In N’ Out for some lunch and then went to LA for the day. We visited The Petersen Car Museum which Luca (and Gabe) loved of course! We went to Happy Ice for a sweet treat, and then spontaneously decided to see the Hollywood Walk of Fame! So fun! On our way back to the hotel we stopped at Noble Bird for dinner.

This is where things got crazy. 

When we finally arrived back at our hotel that night, we realized that with all the storms Long Beach got during the day, our hotel had flooded. Thankfully we were up on the second floor! After settling in for the night, I suddenly got this excruciating abdominal pain. Gabe and Luca ended up taking me to the ER where we learned I had a bowel obstruction. 

It’s a really long and horrific story, but I stayed in the hospital for 2 days and almost needed surgery. Thankfully, after being in the ER all night, Gabe got Luca to his 8 am appointment where he introduced chestnut and escalated his peanut dose. My mom, who was home watching Gia and Rocco, flew in to help with Luca since we thought I would be going for surgery. She took Luca to the beach and they had a really fun day together and I can only hope the good memories outweigh the traumatizing ones. And let’s face it… when you’re sick and scared, you just want your mom!! Gabe’s parents took over watching Gia and Rocco and our siblings were also a big help with the kids while we were gone.

It does not escape me how fortunate we are to have families that will drop everything just to be there for us and our kids. And it’s definitely something I won’t take for granted moving forward. 

I was in pretty bad shape and it’s scary to be in such a vulnerable situation, by yourself, in an unfamiliar place. We missed our flight home, and with more impending storms, it was a bit of a logistical nightmare getting back.

Since being back, Luca has been to the ER again for croup and some associated breathing issues. He has followed up with pulmonology and been started on a couple of inhalers for probable asthma. He’s also had a bronchoscopy, which did show some minor anatomical abnormalities to his airway. At this point he will continue the inhalers and repeat some testing later on. We’re really hoping to get his respiratory system to a healthy baseline, because that is especially important for the food allergy treatment he is doing and it has definitely made us a little nervous to continue with treatment. 

We’ve had a rough start to 2024 but this current cycle is going well. Luca is tolerating increasing doses of his anaphylactic allergens and while very nerve-wrecking for us, it’s also exciting because we are getting so close to the end. He has so few foods to check off the list now.

Because of a busy spring, we won’t be back in California until mid-May. I, for one, am glad to have a longer stretch until we go back this time! We are hoping for a much less eventful trip next time around!