Tuesday, September 29, 2015

In Theory

Today was all about theories.   That's just a positive way to say, still no answers, just a bunch of theories.  However, it was another step today.

We started out at our family doc.  Our PA left the practice we have been going to for ages and moved to another town.  We love this particular PA.  Let's call him Andy!  He's been gone about a month.  I couldn't stand to lose yet another doctor on our team so with a little hunting around, I tracked him down in a tiny town North of us.  He is in the smallest, red neck town but I don't care.  He is kind and very smart.

I told him my diabetes theory and asked him if I was going crazy to think there might be a connection.  He felt like it was a possibility as well, especially when he went through all the symptoms of diabetes.  Spencer answered yes to every single symptom!  Things I didn't even know he was experiencing.  The thing about Spencer is, I call him and ask how he is doing and he always says, 'great'  even when I know he isn't.  So again, I was flabbergasted when he kept answering yes to the diabetes profile.   In theory...it seemed like it was a no brainer.  In reality...his test came back completely normal!  Even the blood work that looks at a three month average...normal.  Even if we did the formal testing, it's a long shot.  Both Andy and I were floored that it was normal given all his symptoms.  Ahhh....

One thing Andy did suggest was adding Immodium to his liquid diet.  He uses that for many patients with chronic diarrhea because it is an anti spasmodic drug and relaxes the GI tract.  I am so hoping this works...even a little!   That's why I like Andy, he doesn't give up on us even when the problems are perplexing.

From there we headed in the opposite direction for Pulmonology.   More surprises!  He said Spencer's pulmonary function test was pretty normal.  He almost had to scrape me off the floor!  They had to give him oxygen just to make it through the test!  I started to say that and he said, "But...there is something not right with that.  I see in the notes that he couldn't get through the test without oxygen."

YES!!!  "And," he continued, "His lungs never changed in capacity from the start of one test to the end.  Even in asthmatics, the lungs show a radical pattern of peaks and valleys as they are strained and then recover. Spencer didn't show that."

Spencer talked about how he can't even climb a flight of stairs at school without having to stop to catch his breath.  He talked about how he wakes up clamboring for air and can't get any, even after taking his rescue inhaler.  I mentioned about the two episodes before his mission when he was turning purple from lack of oxygen and the nebulizer and steroid inhaler didn't work for nearly an hour.

After talking about all the issues, he said, "I am afraid this is not a good pattern.  I was hoping you would tell me the rescue inhalers made a difference.  These experiences reflect the odd pulmonary function test."

I asked him what would cause his lungs to not expand like they should, maybe it's just because of his asthma or allergies.   He said it is a typical sign of Pulmonary Fibrosis and/or Pulmonary AVM's.  And given that his fingers have severe clubbing in them, a sign that the body isn't getting enough oxygen and he has extremely poor circulation, this is likely what we are dealing with...in theory!

Of course, my insurance has denied the tests that will show us these issues for certain.  So, the next step is to see the cardiologist specializing in congenital heart defects.  With a little hope and prayer, he will be able to have some pull with our insurance company.  The pulmonologist was going to talk to our new cardiologist and explain what we are up against from a lung stand point.

I was so glad to hear that he is actually going to call the doctor to have a real live conversation with him before we get there.

He was really concerned about the weight loss and pointed out that Spencer is very dehydrated.   I figured as much but the only way to fix that outside of drinking a gallon of water a day, on top of his mega calorie liquid diet, is to do a week or so of IV fluids.  Well, try telling a 21 year old kid working full time, going to school full time that now, he has to show up to a hospital every day for an hour to get fluids.   It's not going to happen.

So, here is the plan for this week.

Continue the liquid diet but add in food as he can tolerate.
Start immodium
Start a steroid inhaler to try to manage the wheezing
Add a broncodialtor
Record Peak flow lung function three times a day

I also changed his pro-biotic to a stronger strain and added a pre-biotic.

Oh, I should mention this bit of good news...he didn't lose a pound but maintained.  Maintenance is better than a loss but honestly, he was extremely pale and very weak.  Ahhh, I don't like seeing him like this.  I really hope this plan allows us to see a little improvement.

With that, we said our goodbyes until next week, when we all go down to Salt Lake for Cardiology.

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