Old School Background

Saturday, November 27, 2010

Delta's History - Part 3 Finally Catching Up to the Present

Delta and Echo at Echo's
1st Birthday 3/14/2010

In January of this year it was decided that Delta should have a swallow study.  Perhaps that would explain why she wouldn't eat.  The swallow study was done by two lovely occupational therapists and one agile radiologist.  Delta had a hard time sitting still in the seat but was eager to comply with the therapists asking her to swallow different textures from a thin liquid to a solid.  I was amazed at how well the radiologist moved around with his x-ray machine to get the pictures.  It was determined that Delta had no functional problems swallowing but that it was quite obvious that she didn't like certain textures and she was highly distractable and that could make feeding a challenge.  The Occupational Therapists recommended feeding therapy that started in early March at witch she got the diagnosis of Sensory Processing Disorder, basically the nerve impulses that she receives in her senses have trouble processing and in some cases she's over sensitive and perceives what one might feel is pleasant as painful or irritating.

Shortly after having the ng tube placed.
The arm splints are to keep her from removing it.
On March 21, we dedicated Echo to the Lord in our church.  We had put this off for a full year as we were struggling with our Faith.  How could we dedicate a baby to God, when our prayers for our toddler seemed to fall of deaf ears?  We finally realized that although we are Delta's parents, we are not in control.  We cannot stop her from having pain or suffering in life and hard as it is to admit, God might not have plans to heal her.  This didn't mean we were giving up, only that we were taking the role of co-pilot instead of pilot. 

At home with her ng tube and her
feeding pump in the background.

On March 22, Delta was admitted to the hospital for failure to thrive.  We had held off as long as we could but it was apparent that she could not or would not eat enough on her own.  She received an ng tube that afternoon and was not at all pleased.  We were in the hospital for three days and then returned home.  The ng tube allowed her to grow but did not make her happy.  Delta had always vomited or refluxed but now it was a daily if not hourly occurrence.  We had medical paraphernalia all over our house and simple things like joining Bravo's class for a walk at the seashore became a complicated exercise in timing, positioning and carrying enough stuff.  Delta had a hard time tolerating her formula at very high flow rates which meant she spent 13 hours a day hooked up to her feeding pump.  She also completely quit eating the day she got her ng tube.  For the first several weeks with the tube, I doubt she ate more than 3 small bites of food per day.

Shortly after g-tube surgery
Delta continued with her feeding therapy but made very little progress after the ng tube was placed.  She started accepting foods she normally would have thrown on the floor on her plate but very little went into her mouth.  In April we had an evaluation at a local feeding clinic.  They confirmed our decision to pull Delta's ng tube and get her a g-tube directly into her stomach and suggested that we also see an ENT and get a sleep study to rule out any of those issues.  Also since our current OT was leaving her position in June we decided we would start feeding therapy at the clinic in June.  In May Delta got her g-tube a direct port through her abdominal wall into her stomach.  After an initial scare, the doctor's accidentally put two holes in her stomach so she had to be nothing by mouth or g-tube for 72 hours, she healed well.  When they placed the g-tube they did another biopsy of her small intestine.  In this biopsy they found  a high amount of a type of peptide that is only seen in celiacs getting gluten or the severely malnourished.  Since she had been getting her full nutrition from her tube for the last two months and all her vitamin levels were normal we new that malnourishment couldn't be the cause so her celiac disease was  confirmed.  We finally started treating her reflux after 2 1/2 years and she started on prevacid and Reglan.  The prevacid was to help keep her stomach acid down and the Reglan was to help he not vomit and empty her stomach faster.  I'm not sure exactly which it was but it worked.  Delta hardly vomits now.  After two months Delta was on vacation and her meds were forgotten for a few days and it was realized that she somehow didn't need them so now she has quit vomiting and is medication free.  Since the g-tube placement her growth has been mostly steady.  She goes to weekly feeding therapy with another little girl with celiac and since her 3rd birthday she has shown more interest in eating so we pulled back a little more on the tube feeding and currently her growth has stalled.  So we are taking a short while to try and get her eating more and if that doesn't work we will have to increase the tube feeds again.  It is a delicate balance to try to find the right place between giving little enough tube feeds to invite a little hunger and getting enough that she is properly nourished and can grow.  Delta still hasn't seen an ENT but hopefully that will happen in the new year.  She saw a pulmonologist and had a sleep study a few weeks ago and it was found that she does have sleep apnea.  We go back to the pulmonologist in December to find the full results of the study.  Delta is being tested for cystic fibrosis for the 4th time as an explanation for her poor growth, all her other tests have been insufficient quantities of sweat for an answer.

Blowing out the candles for her 3rd birthday.

Catching butterflies in the yard.

Hiking at the State Park

Delta keep us hopping for sure, but we wouldn't have it any other way.  How does it affect the other kids you may ask.  Well, for Alpha it simply brings out his amazing compassion and sensitive heart.  Bravo gets a little jealous but is understanding most of the time.  She had a particularly hard time when we had to miss her 1st grade play right after Delta's g-tube surgery.  Thankfully a great friend videotaped it for us.  Charlie struggles, he even asked for a button (what we call Delta's tube) like Delta's and Echo, she has never known any other life.  She looks for her button and tubie at times and wonders why she can't find it but to hep feeding tube, syringes and pumps are just normal life.  I guess now they are to all of us.

Sleep Study

Dancing with my nephew at my sister's wedding.

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