Endoscopy Results and what's next?

Biopsy results from the endoscopy came back clear. Actually, the term was, "Unremarkable." I guess this time that just means nothing to remark on. ;) So since that all looked great, we can now say that Westin definitely does not have Eosinophilic Esophagitis! Yeah!  But we still don't know what is causing his stomach burning. 

The gastro sent us home from the hospital with a prescription for Carafate.   Westin is to take it three times a day before meals.  Westin has still had the constant burning but has not had any attacks.  He has been careful about what he eats but each day he is getting a bit more daring.  Although, he did pass on steak last night.  Carafate is used to treat ulcers (it serves as a protective coating to let the ulcer heal) so I don't know how long they will keep him on it. 

While on the phone with the nurse practitioner from the gastro's office, she said that the doctor would like to have an abdominal x-ray taken.  So yesterday afternoon we got that taken care of.  While checking in I noticed the order said, "Check fecal load"...so I don't know if he is thinking there could be a blockage or slow emptying?  I have called but haven't yet heard the results of the x-ray.

Endoscopy OVER!

We are finally home and settled in!  I am beat.  I know we are all gonna sleep well tonight.

We arrived at the hospital about 15 minutes early.  By the time we got there Westin's blood sugar was sitting at about 170.  We struggled all early afternoon to get it up but we made it.  :)  We were shocked when we got to our room to find out that the sedation would take place there, the scope would take place there and the recovery would take place there, all in the same room.  Our last experience was at U of M and it was more of a big room with dividing curtains.  They did everything in a different area and then returned for recovery.  We were not able to be with him until he was well awake.  I thought it was a good experience until this time.  Wow, it was great.  We were in a little waiting room right across the hall.  We were back in the room with him as soon as we were done speaking with the doctor.  We were able to comfort him while he started to wake.  I really couldn't have asked for more other than an answer to his problems.

Everyone was very accommodating with his diabetes.  The nurse shared a cute story with us before we left that I want to share because I think the other diabetes parents will get a kick out of it.  Westin had a continuous glucose monitor on him and the nurse used his meter to check him when they were done with the procedure.  He was 134 and she said she would tell us what his blood sugar was.  Then Dr A (the gastro) spoke up and said, "No, I will tell them."  Then the anesthesiologist jumped in and he wanted to be able to tell us.  She said they were like two school boys fighting over it.  I had to chuckle.  I chuckle now thinking about it.  

Oh, the anesthesiologist won, he got to tell us!  :D

Dr A came in and told us that everything actually looked normal.  He took lots of biopsies so they might tell us something but I am not holding a lot of hope.  The good news is that he doesn't appear to have EE (eosinophilic esophagitis) which was believed to be the cause of his swallowing issues.  Now we believe it might have just been drainage causing the trouble.  :)  Small intestines looked good so celiac seems to be well under control.  :)  Stomach lining looked fine, esophagus looked fine.  So we had a little brainstorming session with him, kind of a pow wow.  Jason went over his symptoms and mentioned a hand full of things I have read about online.  (I read so much that I don't share with Jason that it all starts to run together for me so I am glad he was there)  We talked about what tests to do next.  He is going to try to get the breath tests for fructose and lactose moved up.  He was gonna go back over the upper gi and see if something was missed.  He left us to head back to his office and pour over Westin's history.  Oh, but not before Jason strong armed him into writing a RX for something that might help.  Something that will coat is stomach before he eats.  Maybe it will help, maybe it won't but Jason couldn't stand the idea of not having something to try and to offer Westin.

I would say that we were in recovery for about an hour.  But before we left we swung by a friend's room to visit him before we left.  By the time we filled the RX and picked up some gluten free crackers we got home a little after 8pm...what a long day!  

We are very lucky to have great doctors.  We struggled to find a gastro we really liked and I couldn't be happier with Dr A.  I feel very, very lucky.

Thank you to everyone for sending us their positive energy.  Have I said how lucky I am to have great friends too?  Well, I feel very blessed.  :)

PS...pancreas blood work came back normal.

A mom with a lot of time on her hands and not following the rules

I have already broke this news on facebook but I decided it was worth blogging about.  Maybe it will inspire others to request more from our physicians. 

My son, Westin, has been dealing with chronic (constant) burning in his stomach.  It doesn't go away.  It only gets worse or a little better.  It is never gone or even close to gone.  I can remember something starting back as early as November because I remember mentioning it to his allergist.  But it wasn't until the end of December or so that it started getting to this point of constant pain. 

We have seen numerous Gastro's over the years.  Westin saw his first gastro, oh, maybe 7 years ago or so.  He was then diagnosed with Celiac Disease 5 years ago.  Celiac is treated with diet and we didn't really see a need for the gastro at that time.  But we were encouraged to go once a year for a check up.  So we had our first gastro 7 years ago.  We saw a different one for the Celiac diagnosis, who I didn't care for.  So when we were encouraged to do a annual follow up, I requested yet another gastro.  Then we just kind of left it alone and hadn't been followed since.  Then 2 years ago Westin started having swallowing issues.  Our allergist refered us to a gastro in Grand Rapids (until this point we had stayed with the gastros in Kalamazoo.  We met with this new gastro once.  I didn't care for the drive.  I hated their lab.  And I found that I came accross the answer to his swallowing problems on my own, so they really were of no help. 

So with this new problem I decided it was time to give the new gastro in town a try.  Our endo spoke highly of him so I started the request to transfer records to his office and wait for our initial appointment (this was November).  Initially we didn't get an appointment set until the beginning of March.  When his burning started to really escalate in January, I requested to be added to a cancelation list.  The day we ended up in the ER, they suddenly were able to move his appointment up to Feb 15th. 

We met with the new gastro and I really, really liked him.  He scheduled numerous tests, but unfortunately they were unable to schedule his endoscopy until April 15th, a full 2 months after our appointment.  While I had time to wait, I have become Sherlock Mom.  I can't sit here for 2 months and not be actively trying to heal my son.  So of course I take to the internet with any idea that pops in my head.  I have been trying to eliminate lactose and fructose (which he will be tested for in April also) to see if those are causing problems.  I have started him on digestive enzymes to try to alleviate some burning for him.  I have been investigating possible gall bladder problems.  So far I have not found any magic answer.  Most days we keep the burning as mild as we can.  On occassion we don't.  Saturday was one of those days that the burning got so bad that he was vomitting.  It was a long day as we chased low blood sugars and rising ketones. 

Saturday pushed me to start looking for our gastro's email address.  I wanted direct communication with him without having to wait for an appointment.  I have called the office to let them no of new symptoms and I get the nurse who puts it in the chart and it seems to disappear into a black hole.  So to google I went.  I thought I had found it but after shooting off my email and getting it kicked back I realized that was an old address, from when he was a resident at a local medical center, but not the one that he is at now.  So I did a little thinking, after not finding any other email options, and I came up with a pattern for how our hospital generally creates email addresses...like in this case it is the last name and first letter of first name @ our hospital.com.  So I decided to give it a try.  This was Sunday afternoon.  I waited a while and nothing got kicked back so I was hopeful that I nailed it.

Monday came and I kind of forgot about the email.  But then at about 6pm I got a phone call and who was it on the other end but our gastro!  I was in shock.  It worked!  He spoke with me about my concerns.  He told me to definitely NOT try the hydrocloric acid pills I had bought at the health food store in my desperation to make my son better (that right there is probably what got him to actually call me).  he he  But most importantly, he agreed that we should move the endoscopy up and that his nurse would be calling me to see about getting him scheduled in the OR.  Success!

So while I still haven't heard from the nurse (I was on the phone most of the night with my best friend) I got what I needed.  I need a lot of communication with my doctors.  I have a complicated child.  Now I don't recommend stalking your doctor if it is for something minor.  But in some situations, you need to communicate with each other and I find email to be unintrusive.  I can get my needs/concerns communicated and he/she can answer me when they have a convenient time to do so.  I think everyone wins. 

Why do I let it bother me?

It is early Sunday evening, March 21, 2010.  Healthcare reform is about to be voted in.  I have been popping in at www.huffingtonpost.com every once in a while to see the daily news.  Of course the majority of it is about the healthcare bill.  I will be so happy to see this done and over with.  While I would have prefered a public option or even better, a single payer system, this is better than nothing.  At the very least, my son with a chronic illness will have some options if we are to ever afford health insurance for the family before the subsidies kick in, or he ages out of the system.  That, as a parent of a child already dealing with numerous health issues, is a huge weight off my shoulders.  I worry for my son.  He will already have so much to deal with, I can't imagine having the worries of how he will sustain his own life.

But this goes beyond my son with a chronic illness.  I would like insurance too.  I am in my mid 30s and I feel the pressure to have insurance.  Maybe we would qualify for medicaid based on our current income, I don't know.  But see, just because I am poor, it doesn't mean I go looking for all the assistance I can find.  I look for what I need, what my children need.  Yet I see so many of my friends and family making assumptions about "the poor" in such broud sweeping strokes.  If I speak up I hear the "your the exception to the rule".  But am I?  I think I am just like a lot of struggling families out there.  Because you "know me" then I am the exception?  Are you really that short sighted?  Can you not put yourself in anyone else's shoes and feel their struggle?

I really don't know why this bothers me so deeply.  Yet, I am proud to say that it bothers me.  I have a heart.  I care about others, not just myself.  I have seen bad things happen to good people.  I know that those bad things can happen to me and I know they can happen to you.  Part of me just wants to scream and tell the world of my own personal troubles, to shine the light on the truth and say, "Hey, you are talking about ME!" when you make those statements.

So while I can enjoy friendships with people with different beliefs from my own, I can't tolerate ignorance and self superiority.  I enjoy friendships with people from so many walks of life and representing many races and religions.  I benefit from them and I hope they benefit from me.  But when your words are words of ignorance and hate then I have to question your character.  When character comes into question, for me, it is a deal breaker.  

Swagbucks Tip!!!

I am going to write this post and post it everywhere!  So don't be surprised if you see this on more than one of my blogs...

Do you use Swagbucks?  If you don't, you need to!  First you might be asking yourself, what are Swagbucks?  In short, you can earn swagbucks for searching using their toolbar.  That is the easiest way to earn them.  So everytime I need to search something (which happens many times a day) I use the Swagbucks toolbar and randomly earn bucks.  It is always a pleasant surprise.  :)

So, the reason I started using Swagbucks was to earn FREE Amazon gift cards.  I love shopping on Amazon!  I use it a lot to buy gluten free food, books, household items, etc.  Basically, Amazon carries just about everything.  But Swagbucks can be used for all sorts of things.  I can get tons of different types of giftcards, including itunes, or I can purchase electronics, books, toys, etc.

Here is the great tip I learned today and I want to pass it on to you!  I have been working towards a $25 dollar Amazon gift card.  I need 3150 swagbucks for a $25 gift card. I just found out that I can buy 5 $5 gift cards for 2250 swagbucks...that is a big savings! For 3150 swagbucks I can actually buy 7 $5 gift cards!

If you would like to check out Swagbucks, click here to learn more.