Round 2… & 3

Jul, 22, 2017
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Alright… I’m going to quickly power through the summary of our next 2 hospitalizations so I can get on to what her diagnosis means (FPIES) and some happier things!

I was on a medical leave from work to take care of Peyton, specifically because she couldn’t be in daycare for at least 2 weeks since her immune system was so compromised from surgery.  I became a hermit for at least the first week we were home.  I was SO on edge.  I was too scared to drive anywhere with her because I didn’t know what I would do if she started throwing up.  If we did drive anywhere I rode in the back seat with her.  Finally after a whole week of being cooped up inside we decided to go to the farmers market on Saturday with our friends.

It was so nice to get out of the house and for once it wasn’t raining.

From there I was finally starting to relax a little.  We had her follow up with the surgeon (who we loved!) exactly 2 weeks from the day of surgery.  We took some bundt cakes to the pediatric nursing staff because they were so great, then headed to the appointment.  She did great and we were cleared to start reintroducing solids that she had previously tolerated. Awesome! 

That night I waited until Jordan got home and we fed her some sweet potato around 7pm.  They told us not to limit her so she had almost a full jar!  Then it was bedtime.  We went in around 9ish and she woke up for one more feeding… and started throwing up again… WTF?!

We waited to see if she would stop, but after 3 rounds we loaded in to the car and headed to the ER.  It’s never a good sign when the ER nurse remembers you & your family…

We were admitted to the hospital again that night.  And battled with the IVs until about 3 in the morning. Eventually they had to put the IV in her skull because they couldn’t get it to stay in any other spot. So awful. The nurses were all shocked to see us back since we had just been in with treats and Peyton was doing so well..  But on the positive side, no NG tube!

The next morning she was set to have a whole other set of imaging done to see if the surgery worked or if there was a new/different blockage.

After a long morning in the x-ray department for an extensive imaging series to make sure everything was working right we determined that the surgery was still “working” and there were no blockages.  We went back to the peds unit – they decided to keep us another two days to make sure she could tolerate milk again before we were discharged.  Since there was no blockage they referred us to a GI doctor and we were told to hold off on food

for another 2 weeks just in case her gut wasn’t healed.

I went back to work the following Monday… Peyton went back to daycare with strict feeding instructions.  We had a lot of doctors appointments and changes made during the month of June.  We hired a nanny so that Peyton wouldn’t be as exposed to germs in case she still had a compromised immune system and so she could have one-on-one care since she was a little traumatized from the hospitalizations.  We slowly introduced a few simple foods (apples, carrots), and we were also supplementing with a formula at this point.  I had done a lot of searching on what could be causing this for her and brought up what I found (FPIES) to her GI doc, pediatrician and an allergist.  They didn’t write me off but thought it could be inflammation of her esophagus.  The GI wanted to do an upper endoscopy but J & I decided to push it off so we could get a second opinion from Dornbecher’s, unfortunately we couldn’t get in to them until the end of June.

Well… after a few weeks of being home things seemed to be going well.  Peyton did have a cough that had developed and wouldn’t go away which I thought was odd, and it was freaking me out because with the first episode we had she also had a cough that was around for a while before the vomiting started.  I took her to the doctor on the Friday of Memorial weekend just to be safe.  They listened to her and thought she could have pneumonia. We started her on antibiotics preemptively and went off to enjoy our holiday weekend. On Memorial Day we went to the pool at my parents country club and too P in the pool.

After hanging out for a few hours we headed home. She fell asleep in the car so I had Jordan make a quick stop so I could run in to a store and return something. Well – I hadn’t been in the store more than 5 minutes when I got a text to “Come back”. I had a bad feeling and sure enough… she woke herself up vomiting, so off to the ER we went.

We were admitted quickly after an IV was started and we started rehydration. My parents rushed out to the ER and it was awful. Once she started throwing up she couldn’t stop so after a few hours she was vomiting up some blood since her tummy was getting bruised. It was heartbreaking.

They decided to do an upper endoscopy the next morning. We were in the hospital 2 nights this time while we made sure she was stable and recovered from the endoscopy. At this point my suspicions were finally confirmed and they told us they believed she has FPIES.

It has been a long and stressful journey just to get to the point of a diagnosis. But we have so much farther to go. FPIES is a very rare allergy that you can read about here. We have spent a lot of time in a variety of different doctors offices over the last few months but at least we have something to call this. And Peyton is still a crazy happy baby despite all we’ve been through.

If you have any questions about what we’ve been through I’m happy to share in more depth about our experience and what’s working now. I’ll keep sharing here but I’ll be happy to start posting some more happy posts!

♥ E & P

August 3, 2017

Erin Phillips

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