Lilly Update

by Hope Sewell on July 20, 2011

in allergies, eos, family, kids

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 We have spent the last couple of days in Birmingham.  Lilly had her routine Endoscopic Surgery with biopsies.  (to manage her EOS)  We drove up on Monday about mid-day, splashed around in the hotel pool, and met some new friends for supper.  Then we were up bright and early at 5 am. I DO NOT do this often!!   Whew!!….this girl is not an early riser.  We made our way to the Childrens Hospital’s one day surgery.  It was PACKED too!!  But it wasn’t long before we were taken back to triage and then to a room.  We had a WONDERFUL nurse!!  He was so funny and just played with her and cut up with her and made her laugh!!  After he did his job and took all of her information down he went and got her a bottle of bubbles.  Having those bubbles really put her at ease.  We blew them for a good while.  And then our kind nurse brought her a Mickey Mouse poster and some markers to take home.  Before she was taken back to surgery we had a good bit of marker on the bed sheets.  😉

Here we are before surgery….so happy!

We were able to walk back to her operating room with her (which is not always the case).  We had a little bit of time to hang out there and let her get comfortable.  This was actually her easiest “hand-off” ever.  She normally screams as she’s being taken by the nurses but that was not the case this time.  She went to sleep great and we went back to her room and waited.  It took a little while so I had a feeling that we weren’t going to get the best results.

Her esophagus was thickened but looked good overall.  The biopsies will tell us what to do next there.  So that was pretty good news.  The medicine that she’s been taking for the last 3 months has been helping.  However, there was food in her stomach…Monday night’s supper to be exact.  And that should have already been digested and sent on through to her intestines.  Especially since it was applesauce and a couple of cookies.  Sounds like the supper of champions I know but that’s kind of how it goes when we travel with allergies.  Her small intestine was very obviously irritated and inflamed.  And that’s a problem.  Eosinophils could be here as well and causing this irritation and inflammation or her tummy could just need a little help in digesting her food and have too much acid.  The longer the food sits in there, the more acid….not a good thing.  This nastiness in her intestines and tummy can very well explain her gas and swollen tummy (click here and scroll down to see how large her tummy gets) as well as her frequent tummy aches.  So…the biopsies will tell the story here hopefully.

Here she is right after surgery…..not so happy.

She told us 1000+ times that she wanted that IV off!!  She had to keep down some juice or a Popsicle before she could take it off and she refused!!  So we had to wait for her whole IV bag to empty before we could be discharged.  She was so happy to get that IV off and then she downed her entire cup in the car before we had even gotten out of the parking deck!!!!!  That’s one stubborn girl…..she just might get that from me unfortunately.  We were out in time to get breakfast from McDonalds and then we made our usual stop at Whole Foods.  She was in very good spirits by this time. Oh and I had to put blinders on to keep from getting all kinds of fun ingredients and such at Whole Foods!!!  I did get me and Ruthie some fresh body scrubs.  Lavender for her and Seaweed for me *sigh*.

Overall we had a good trip.  I was a bit disappointed at the news we received.  Keith and I were talking in our hotel room on Monday night.  We always get a “suite” so we can set Lilly’s pack and play up and she’s not staring directly at us begging to get in our bed.  Anyway I was discussing some of my worries with him and I hear Lilly pipe up from her pack and play and at 2 1/2 years old she clearly and slowly says, “Don’t worry ’bout Lilly.  I fine.”  And for the next 10-15 minutes she continued to yell out ever so often, “I fine mom, I still fine.”  That really made me scratch my head and think does she truly understand and comprehend what I’m talking about???  But that was a clear picture of her personality…strong and independent even with her challenges. We’ll get our biopsy results later this week or early next week.  Which if you translate that out of physician talk into reality, that means we’ll hear within the next two weeks and probably because I’ll be calling them.  😉

Thank you for your thoughts and prayers for her.

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{ 4 comments… read them below or add one }

Kristee Dowling July 20, 2011 at 12:42 pm

I know you are so very tired. Glad you had a safe trip to Bham. Super cute pics of that precious patient!

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Hope Sewell July 20, 2011 at 12:50 pm

DEFINITELY moving slow today!!

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Leigh Ann Phillips July 21, 2011 at 8:41 am

I’m so sorry you guys had to go through that. My daughter’s been in the hospital twice this year. I did a rotation at the Children’s hospital there in Birmingham and I know they have great nurses and doctors there. I hope you guys can have some normal for a while. When your child’s been in the hospital, normal becomes a wonderful thought!

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Nicole @ DavisDomestications July 21, 2011 at 5:16 pm

Wow! Just said a prayer for you and your family. I can’t imagine what she goes through and what you go through knowing what she deals with. Sombering. So glad you have Him to rest and find comfort in!

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