July Update: The Fun Stuff and The Medical Stuff

Believe it or not, there is not much to report.  July has been relatively tame with the usual therapies, fun summer activities, and only 2 doctor's appointments.

The Fun Stuff:

At the very end of June and into July, my mom (Baba to Ellie) visited from St. Louis.  We had a full schedule trying to fit in everything we wanted to do.  With each visit, we make sure to get breakfast with awesome coffee and head to the mall to ride the train.  It is tradition, you know!  We went to a 4th of July BBQ at my friend's house - the friend I have known since I was 8 years-old, the one who introduced me to my husband.  We had a great time and Ellie was very well behaved.  You all know what a feat that is.

Ellie and Baba

Ellie is still trying to hard to talk.  She is saying new words such as arms, kick, and fast (sounds like *ss).  Girlfriend certainly has her curse words down. Her speech therapist had me write down 10 of her most favorite foods so that she can work on these words specifically.  At the very top of the list is "cake". Right now, she signs it incessantly while making the "k" sound only.

4th of July BBQ

At the beginning of July,  Ellie participated in a dance camp for the children who are a part of the 2dance2dream program.  The Bear had a great time and I had 2 hours for 3 days to myself.  It was wonderful.  I did grocery shopping and ran a few errands.

Enjoying dance camp

Last year, we started swim lessons with this woman who works solely with kids who have special needs and their siblings.  Ellie made great progress last year and I worried that she would have lost all her skills during the school year.  Not so, she remembered!  As a child who is petrified of water (aside from baths and a splash pad), she is doing great.  With some assistance, she can swim across the pool.  It isn't super wide, but it is amazing progress.  She knows to hold her breathe and come up for air and moves her arms to propel herself through the water.  She still has trouble coordinating kicking and arm movements together, but that will come with practice.  She is also able to pick up diving sticks from the bottom of the pool.

The Medical Stuff:

Weight Gain-- that's right, our girl finally gained weight!  Nearly 2 lbs.  The Bear is going to be a chunky chicken once again.  Well maybe not but her ribs don't hang out as much.  She is still eating the same amount of food, but we started Carafate for her ulcers.  I am thinking she is finally healing and is now able to absorb more nutrients from her food.  Fingers crossed she keeps the weight on.

Urology: Six weeks people.  Six weeks to get a pre-op appointment!!!  Apparently, GI does not do the cecostomy ostomy and button procedure [Malone procedure].  Urology does.  So on June 16th, we got referred to urology.  She already has a urologist for her chronic urinary retention (which has resolved!  Woooohooooo!), yet she was referred to a different doctor, Dr. C.  Dr. C was out of town.  Once he returned, he took an entire week to get to her chart before referring her to her primary Urologist, Dr. McQ.  At this point, Dr. McQ was out of town.  She was pretty quick to review Ellie's chart and set up phone conversations and emails with Ellie's gastroenterologist.  However, the GI doc wanted to meet with the urologist in person.  They were going to meet up in 2 weeks.  Both docs conversed this past Tuesday and Dr. McQ worked us into the schedule yesterday.  It is a good thing we had a pre-op appointment as GI told the urologist that we just wanted to catheterize and not have a button.  Um, no.  We want the button.  This is why it is good to confer with all people involved in your child's care.

Now, there will be two urologists involved in this 2-4 hours procedure.  The goal is to do this laparoscopically, only Ellie may have a super floppy colon due to the musculature issues and being stretched out.  If they are not able to do it laparoscopically, they will open her up.  I am quite apprehensive about this.  I do not want to do this if they have to make a big incision, but we also need to treat her issues.  We won't really know what will happen until they get into the OR. So coordination for surgery is tricky as both surgeons need to be available for 4 hours on the same day.  Fortunately, we have a tentative date for September 12th.  Ellie will be admitted the day before for a bowel prep and then surgery in the afternoon on the 12th.  After that, she has a 2-4 day post-op hospital stay.  How will I keep this child occupied for that long?! Fingers crossed and prayers that she can have surgery during this time or we are looking at a much later surgical date that may be affected by insurance changes. Fingers crossed that our primary insurance covers this procedure, the bowel prep, and hospital stay (recall they refused to cover Ellie's hospital stay and manometry last month).

Hanging out at the Dentist

Finally, Bear had a blast at the dentist.  I don't know why other than the toys and getting her own tube of toothpaste.  She was fabulous until it was time to floss.  It took two of use to hold her down, but she was great for the exam, brushing, and fluoride treatment.  If only she was that good at home!

As for me, my uterine ablation from last mont failed.  I am looking at a hysterectomy come November.  I am not looking forward to this.  It is a big decision and I flip flop back and forth between going through with it.  It is a 6 week recovery which should be interesting while caring for Ellie.  I will definitely need help.




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Upper Endoscopy - some answers and some questions

I wanted to give a quick little update as Bear had her upper endoscopy on Friday.  I hear you all snickering about the "quick" part because I am not exactly known for my brevity.

Upper GI or upper endoscopy or an esophagogastroduodenoscopy:  Whatever you want to call it involves inserting a lighted tube through the mouth, down the esophagus, and into the stomach and duodenum.  The duodenum is the upper 3rd of the small intestine.  This tube has camera that essentially allows the doc to see the insides of your upper gastrointestinal tract to look for reflux, ulcers, tumors, etc. and allows for biopsies.

Bear actually had one back in August of 2011 because she was Little Miss Spits A Lot with her reflux projectile vomiting.  Funny thing, is that after she got the endoscopy, she stopped spitting up.  It was as though the test cured the reflux.  We couldn't completely 100% rule out celiac based off of this upper GI because she has barely started to consume gluten after testing out of an oat allergy (yes, a random oat anaphylactic allergy).  Oats are often grown next to wheat or manufactured in the same plants as wheat, which is why we pretty much stuck to rice.

There are two main differences between the endoscopy results from 2011 and this past Friday.  The one from 2011 showed a beautifully pink and normal upper GI tract.  The one from Friday did not.

Bear's esophagus was beautiful. No signs of reflux or anything exciting like that.  Her stomach, however, is quite angry.  Red.  Inflamed.  Basically, she has gastritis.  The GI doc did a rapid test for H pylori, which is a type of bacteria that causes ulcers.  It was negative.  He will send a sample to the lab to do a more conclusive test.  There is also the possibility that one or some of her medications are causing the gastritis.  Or it may be something else.  The upper part of her duodenum is also not very happy with marked pockets of inflammation aka duodenitis.  This could be from leaking stomach acid into the small intestine, an autoimmune disorder such as celiac disease, lactose intolerance, or some other inflammatory process. The lower portion of the duodenum appears normal.

Upper GI of esophagus through duodenum (upper part of small intestine):
all areas pale pink with no signs of ulceration or inflammation.

Upper GI: Abnormal (I apologize for poor quality)
Note the redness in the 2 views of the stomach as well as a small ulceration in the upper duodenum.
The yellow is bile , which is a normal finding.

Seven tissue biopsies were taken and have been sent to the lab.  It will be 1-2 weeks before we know the results.  Based off those results, we will have a clearer idea as to what is causing the inflammation, what other tests need to be run, and a treatment plan.  Interestingly, it may have nothing to do with her constipation issues, but probably has had a significant impact on her poor appetite and her poor weight gain even with the appetites stimulant..  It is a lot of wait and see.  In the meantime, we are going to start her on Protonix, a proton pump inhibitor similar to prilosec ,which well help decrease stomach acid production and allow her stomach to heal.

To say that I am stressed out is an understatement.  I really thought everything was going to come back normal. How long has this been going on?  Why didn't the GI doc agree do the scope earlier?  How could I not know that my daughter was/is in pain?!  Oh how I wish Ellie was able to communicate and tell me what hurts and bothers her!

Ellie Bear vs. the OR:
We were fortunate that Ellie was able to have her procedure at the outpatient day surgery center rather than in the hospital OR.  It was a much more pleasant experience for the most part.  Well, as pleasant as a surgical center can be. She did great in the waiting room, but then lost it when we got pulled back into pre-op.  She saw those hospital beds and knew what was coming.  This was  her 3rd time under anesthesia in the past 5 months so she remembered how cruddy she feels afterwards.  She calmed down with the help of her iPad, a fresh coloring book with color wonder markers, and a new book . . .  until the surgeon, charge nurse, and anesthesiologist showed up, which is when she displayed her super human Bearity Bear strength and shenanigans.  Ellie gave us a little trouble coming out of anesthesia.  Probably because she wanted some beauty sleep, but as soon as she was up, she was wild!  Girlfriend is a cranky pants, combative little toot post-surgery.  She screamed the entire way home and continued to be agitated even after she ate 3 chocolate frosted donuts.  A few hours later, she was back to her usual perky, spunky self.




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