Thursday, July 2, 2015

I am officially pissed!

Pissed is such a disgusting, harsh word, but I am disgusted and need to harshly emphasize how angry I am!!

Let me start by apologizing to anyone who may be offended by my opinion.  Hopefully you know me well enough to understand my feelings are warranted and that venting on this blog will help me work towards forgiving the person I am mad at.

This person happens to be one of Alex's many doctors;  he is someone we should trust and I don't.  This mistrust goes back to when Al was 5 years old!  I didn't worry about replacing him 13 years ago because Alex didn't need to see this doctor often - twice in 15 years - and when we went back recently I figured everyone has bad days and  I needed to give him a second chance.

***SPOILER ALERT***  Do not read any further if you don't want to hear details of my opinion of a certain ENT we will call Dr. M.

When Alex was 5 he had a hole in his eardrum.  It never closed up after the tubes fell out of his ear.  His first ENT, whom I loved, was watching it carefully for over 2 years, but he didn't take Alex's insurance anymore so we ended up going to Dr. M.  Dr. M IMMEDIATELY suggested surgery.  Insisted is more like it;  he used the scare tactic of  an infection getting into Alex's lymph nodes which are so close to the ear, and if that happened Al could die.  Yup.  That's how he addressed it.

Surgery a few weeks later.  They took a piece of muscle from another part of his ear and patched the hole with it.  What Dr. M failed to mention is they would need to make a C-shaped incision around the back of his ear so they could flop his ear and the skin over to work on the inside.  Now, you may be thinking, "But how did you think they were going to do the surgery?"  Well, having had 2 kids get multiple tubes put in their ear, I thought this surgery would be similar.  I thought they would go through the ear canal, especially since he said it was a "simple surgery" and would be a bit longer than putting tubes in ears, but not by much.  That was all the explanation I got.

Recovery room;  Alex has a huge mound of gauze on his ear with an ace bandage holding it in place by being wrapped around his head.  He looked like a freakin' war victim.  We were stunned!  And to top it off, it didn't help his hearing any, which was a hope.

Thirteen years later; the present time.  As I have reported before, Alex's oxygen sats have averaged in the high 80's for more than a year now.  (Anything below 90 causes concern to doctors.)  There was no clear explanation for why this was happening so Alex's pulmonologist (Dr. P) suggested we go to an ENT because they would know what tests to run to see where the problem could be, if the problem lied in the neck / facial area.  So off to Dr. M we go.  After a quick 5 minute appointment, we leave with orders for a CT, MRI and swallow study.  I was truly excited for this so we could see what could possibly be going on to cause low oxygen sats.  The swallow study was fascinating.  I got to watch a video of Alex's skeleton swallowing different degrees of thickness of fluids!  The MRI and CT were done a different day because it had to be done under anesthesia.  Two days after these tests I got a call from Dr. M with the results;  Alex needs a tongue reduction surgery.  They need to remove 1/3 of his tongue because as he sleeps his tongue falls back into his airway and blocks it.  He said it was a very "clear indication for tongue reduction."  When I asked, "But why are his sats low during the day?  That was the main reason for these tests!"  He replied there is no indication as to why his sats are low, other than his recent rapid weight gain (caused from a medication he takes for anger issues.)

Not. Comfortable. With. That!!  I mean how barbaric can we get?  Are we living in the 1500's?  I talked to multiple Speech Language Pathologists who had never even heard of the surgery being done except in cases of tongue cancer, and to another ENT who said we should go to the cardiologist and see how his heart is doing.  If his heart is staying stable, and if we could get him to wear his CPAP he wouldn't do such a drastic surgery.

We took Alex to a behavior specialist that deals with getting kids to wear their CPAP, and he now wears his CPAP all night long with no problems.  Check.  Saw the cardiologist who not only says his heart is doing great, but as we watched the CT and MRI on his computer (the first time for me) he asked what the ENT's explanation of Alex's trachea being squished was.


A normal trachea is circular in shape, with a size of 15 (mm?).  Alex's is hot dog shaped with a size of 5 (mm?).

Called Dr. P - the pulmonologist  - and scheduled an appointment.  Now let me just mention here that in my job I talk to a lot of parents about the different doctors out there, and when we discuss Dr. P I let them know that she can be a bit overwhelming and sometimes seems forceful when it comes to  children with sleep apnea (which I am a firm believer that most kids with Down Syndrome have) wearing their CPAP.

So, the visit with Dr. P today;  lung disease caused by silent aspiration over and over.  His trachea is VERY small and there are other anomalies in the structure of his bronchial area and ALL of this would explain his low oxygen sats during the day.  She would NOT recommend the tongue reduction surgery for Alex because he has so many other 'obstructions' that fixing one (the tongue) wouldn't help any of the other problems.  Actually, nothing will help the other problems.  We could do major surgery to see if his trachea is being squished by something or it's just misshapen.  And if it is being squished by his aorta we could do bypass surgery.  But that surgery would need to be done every 10 years or so.  And then we still would have the other disfigurations in his broncial area that would cause obstructions.   End result;  we could thicken fluids for Alex so he doesn't silent aspirate anymore to cause more lung disease and monitor his oxygen to make sure it doesn't go lower than his average, and continue with the CPAP,

I'm sure I looked surprised as we were discussing this.  This was all news to me - except for the smaller trachea, which the cardiologist wasn't even sure he was reading the images correctly because it's not his specialty.  I finally told Dr. P that no one had discussed this with me.  She mentioned it is all in the notes that I would have gotten from Dr. M.


Nope.  No notes.  No mention of the several reasons for Alex's low oxygen during waking time.  No explanation of the swallow study results.  BUT in the notes that Dr. P was reading from - and to which I should have had a copy of - Dr. M wrote that it was "discussed with mom" about oxygen concerns being caused by malformations, and the suggestion to thicken Alex's fluids.

OOOOOOO!!!! I'm seething!  My child is not yours to butcher, just to get you in the medical publications.  My child has many, many health and emotional issues and let's discuss EVERYTHING that pertains to his well being!  Let's discuss SOMETHING that will benefit my son.  Not you!

In all these years, and all these doctors that I have taken Alex to, this is only the 2nd one I won't ever return to.  Only the 2nd one I do not trust to give me the information I need.  (The first doc was an arthritis specialist who told me that Alex needed to buck up and I needed to let him grow up because there was nothing wrong with his knee that would cause him the agony he was in and not able to walk for 6 weeks.  That doc ended up being called by an orthopedic surgeon at the 6 week mark when it was discovered in a hip xray that his hip was completely out of it's socket.  The orthopedic chewed him out because apparently it's common knowledge that if a person has knee pain, you should always check the hips as well as the knees.  The hip pain radiates to the knee.  And I have to give this arthritis specialist kudos;  he came to Alex's hospital room everyday he was in the hospital to apologize, and to let me have my chance to chew him out.  Because of this incident, this specialist said he realized he needs to listen to the parent's concerns more and judge less.  Unfortunately Alex now will have a lifetime of hip troubles because of this doctor.)  I say this to show I am not one of those vengeful people who look for something to be wrong.  I feel I am pretty optimistic and can work with many types of personalities and people.

BUT IF YOU MESS WITH ANY OF MY LOVED ONES - LOOK OUT!  I will not hesitate to let anyone who asks know what kind of jerk you are.  And I may even blog about you!!

Take that!

Wednesday, July 1, 2015

Next big step

Now that Al is 18 he needed to get a picture ID.  It was so weird walking into the DMV with him!  Seeing all these other teens there to get their license - he felt like he was just where he needed to be.  I didn't tell  him the difference between their cards! And he has been told he can't get his license until he's as tall as his brothers.  (Not gonna happen!)

There was hardly a wait at all!  (We went to the Draper location instead of West Valley.  Will definitely go there from now on!)  He sat, I took his picture, they called his number.  Awesome!  But I still had to post a picture of him looking bored in the DMV waiting room.  It wouldn't be complete without it!

This gentleman treated Al with respect an adult deserves.  (Even when Al whined because he only got a temporary card!)

He didn't need his eyes tested for the ID card, but he checked it out anyway.

And here he is!  The proud owner of his first picture ID card!!