Update on Button Boy

16 Aug
Sweet Baby Boy

Sweet Baby Boy

We have been through a lot in the last few weeks with Button Boy, and I apologize for not updating Coffee Talk with where we stand.  I have said in the past that we have struggled with Failure-to-Thrive and eating….well, we are struggling again.  We had an upper GI on July 1st.  The results from it were normal with some pretty bad reflux.  We are on medication, Prevacid, Carafate and Pepto Bismol (Gismol if you are Button Boy!).  After 2 or 3 more weeks of reflux problems and increasing “spitting up”…I called Dr. Saeed, and he sceduled us to see the ENT, Dr. Wooley.  We saw him on August 5, and he did not see any problems with our boy’s ears, nose or throat…., but did recommend that Dr. Saeed scope Button Boy.  Dr. Saeed’s nurse contacted within the next two days (I love that CHS doctors communicate between one another so well!) and scheduled the Endoscopy for August 13.

WOW!  It happened so fast!  The nurse said that Dr. Saeed wanted to get in and see what was going on quickly, and that he would be taking biopsies all the way down.  We elected not to tell Button Boy about the procedure until we were headed to Birmingham…he tends to worry so much.

We had to be at CHS at 6am, so we got to spend some time with our dear friends, Mr. Thad and Mrs. Kimberly, which is always a blessing!  We spent the night at a Quality Inn….and even though it was not the highest “quality” hotel, the management was so kind and understanding and were able to offer us a discount to help with the cost of being in a hotel for less than 12 hours.  We arrived at Children’s Hospital in the outpaient surgery area a little late, but of course, the staff was understanding and saw that Button Boy was struggling with courage for the procedure.  He was quietly crying and cuddling with Mommy or Daddy (whoever was holding him at the time).

Each nurse, or doctor that we saw talked with Button Boy and tried to calm him down.  They explained everything to him, that they wanted to take pictures of his throat and tummy to find out why he was feeling “a bone in his throat” and “tasting throw-up”.  A Family Services girl came in and even showed him a book of a puppet (I can’t remember the puppet’s name) who had been through the same procedure that our boy was about to go through, and he was scared and had them take pictures to show the other children so they wouldn’t be scared.   It helped Button Boy to see where he was headed, and to touch the oxygen strap, the bp strap, and gas mask that he would see in the surgical area.  We prayed with Button Boy for God to give him strength and courage to go through the Endoscope procedure.  We walked with him to the surgical entry, and Dr. Saeed met him at the doors!  It made Button Boy relax so much more to have Dr. Saeed’s familiar face smiling at him when we were leaving him….I LOVE CHILDREN’S!

The procedure was over, but not as quickly as we thought it would be!  Dr. Saeed came into our room, and admitted that he fully expected to go in and look around, take some biopsies and come back to say that he found nothing, but that was not to be the case.  He saw what looks like Eosinophilic esophagitisHe showed us the pictures he had taken, described the condition and said that he would wait until the biopsies were back, sometime next week, to schedule allergy tests and prescribe new medication.

So, we are waiting for the next few days to see what the biopsies show and what meds we are going to be taking.

Pray for us….pray for guidance for Dr. Saeed and his nurses….pray for Button Boy to have a good attitude with his medications and eating.  And while we are asking for prayers, we ask that you pray for Girly Girl — she had a retainer placed last week, and is learning how to talk and eat with it in!  She is a talker, so it is fun to listen to her!

Thanks so much!

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2 Responses to “Update on Button Boy”

  1. Jennifer Gremaux August 16, 2008 at 12:06 pm #

    Thank you so much for the update!! My daughter was dxed with EE several years ago and we had a really good outcome. I will pray that everything goes well for your son! I have to agree with you about the docs and everyone at Children’s – they are wonderful!!

  2. charla August 16, 2008 at 8:05 pm #

    Ugh, I’m so sorry you all are struggling with this again. We had baby Tyler this weekend, so, as you know, I can now empathize a little bit. You will all be in my prayers.

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