Medical Frustrations

I hope you don't mind that I vent for a moment.  It is about my little bud, Spencer and his medical issues.  I am so over this whole coughing issue with Spencer.  I feel so bad for him and I feel bad for his body.  He has got to be exhausted.  All of his life, literally, he has had this horrible cough and would go into coughing attacks.  Sometimes his lips would turn purple, more often, he would throw up because he was coughing so hard.  When he was just a baby he would wake up in the middle of the night coughing.  I thought this was his way of saying he wants to be fed again, so I would nurse him.  Then he would go into such a coughing fit that he would throw up.  When he was a year old, I asked his pediatrician about it.  He said it is probably asthma since most year-old babies don't have allergies.  (Or maybe it is the other way around...I can't remember) So he was put on steroids and breathing treatments.  Not that much fun.  We did that for quite a while until I realized that the meds weren't really doing much.  We end up giving him more steroids and more breathing treatments.  Often times, the doctors freaking me out saying that he might have needed to be hospitalized if we would have waited one more day.  

Let's fast forward to when he is two years old, literally a year ago..... I talk to my friend about my frustrations since his coughing attacks haven't stopped and she told me that both of her girls see this amazing pediatric allergy/asthma specialist, Dr. Shimamoto.  (I recommend him to ANYONE!!!! He is amazing!!!!!) I called him up and made an appointment.  He listened to his lungs for a very long time and said he doesn't have asthma because he is not wheezing.  That is what I had been feeling, since his breathing treatments are useless, even though we still did it.  He said that maybe he has allergy-induced asthma where it is more allergies causing him to have these coughing attacks.  So he does an allergy test...negative.  He really isn't allergic to anything.  So now Dr. Shimamoto, who I love because he listens to me and he put everything in lame man's terms, says we are going to do tests.  Go down the list of 5 tests and see what it is. 

The first was a trip to Phoenix Children's Hospital for a sweat test to see if somehow he has cystic fibrosis, since I am a carrier.  Test came out negative.  Then he did a couple of other tests, mostly blood tests, all coming back negative.  The last test we did was once again at PCH, where he did a cat scan on his head and chest.  We find out that he has Cronic sinititus. Which is basically a constant sinus infection.  That explains why antibiotics would stop his coughing attacks but we really don't want him on antibiotics 24/7.  Remind you,  this is January/February 2008 and we are in the process of moving to Utah.  So Dr. Shimamoto says that the next steps are to go to a Pediatric Ear Nose Throat specialist and surgery will be involved, to clear up his sinus cavity so that he can breath again.  Great!  Wonderful!  Prayers are answered!!!!   so I thought.

I update our new pediatrician what is going on and he says that if he doesn't have the signs of being 'sick' then the ENT specialist won't be able to do anything.  So we have to wait until he has his coughing attacks again.  All summer long, Spencer was great.  No coughing attacks at all. That was short lived.  In late November, he started again.  He sounds horrible. He can't even sleep because he is seriously hacking up a lung. And of course EVERYBODY thinks he is sick-sick.  People at church give us bad looks like 'why in the crap are you bringing your sick kid to church?!" People at the grocery store shake their head and tell me I shouldn't bring a sick kid out in this kind of weather.  People at the gym look at me like, "are you seriously going to drop your kid off at the kids club when he is sick?!"  And my reply is always the same....."He has asthma,  we are trying a new breathing treatment". Even though I know that really isn't the case, it is just easier to explain it that way.  

So I see a different pediatrician, in early December, at the same office as our normal one since he had the day off.  I explain it to him and he says, here is a prescripction for Promethazine with codine in it to help him sleep at night.  If he is still coughing in a couple of weeks, come back in and we will say 'uncle' and go see an ENT."  I thought FINALLY!!!!!  We are where we were a year ago and time to move forward and get that referral for the ENT!!!  So he stops coughing until earlier this week, which I have given him more promethezine with codine, and that won't even stop it anymore.  On New Years Eve, I wake up to Spencer laying in the middle of my bedroom, staring at the wall, his lips WHITE and his face HAS NO COLOR WHATSOEVER!!!!!!!  I freak out, take him to our normal pediatrician and he says that since all of his vitals are normal, it might be a virus and he is just dehydrated.  (I was worried it was RSV or pneumonia) I ask him about the whole 'seeing a ENT' and he said, "If he doesn't stop coughing or he gets worse in the next couple of days, come back and we will see what we can do!"  I say, "OK, It is probably a virus.  have a great New Years Eve." and I leave.  What I should have done was bitch-slap some sense into this doctor, that I really do like, I really do, and refuse to leave until I got a referral for the ENT!!!!  

So here is the venting:  I am sick and tired of 'come back if he isn't better in a couple of days' crap.  "let's just give him one more prescription and see if that does anything"  Done with that one as well. He has had this for 3 years!!!!  Medicine is NOT helping!!!!!!  A YEAR AGO, he needed to see an ENT specialist and he still hasn't.  I really feel like an ENT would be able to help Spencer.  If any of you have heard Spencer's coughing attacks, he seriously sounds like he is going to hack up a lung.  I don't understand why the pediatricians are so reluctant to give me the referral.  UGH!!!!!!!  So here is what I am going to do..become Mamma Bear.  Monday, call Dr. Shimamoto's office and get another copy of Spencer's medical records.  Make an appointment with his pediatrician for Tuesday, he has Mondays off.  REFUSE to leave without a referral.  I even have an ENT in mind.  I just need a stupid referral. And then make an appointment with the ENT.  And hopefully get some answers.   Wish me luck.  Hopefully that won't take another year.