Casey's Medical Journey


Casey's Ear Tube Story

Casey has always had chronic fluid in his ears.  When he was little, they tried to do a hearing test, but he has a flat tympanogram (sp?) because of the fluid, so the test could never be completed.  They told us to treat him like he has a mild hearing loss--looking at him when you speak with him, being close to the front of the room in school, etc.  I'm sure his hearing is pretty darn good, because he always knows when someone comes in the room even when he's turned away from the door...


Anyway, when he was having some issues in school last year, we decided to investigate his hearing and vision a bit more to rule out a physical issue.  We decided to try tubes.  They had been offered to us before, but we didn't want to have him under the anesthesia if it wasn't totally necessary so we opted out.  Casey had had a few ear infections, that we knew of, but not really bad ones. 


He got the tubes in mid-December.  He did need anesthesia because they cut the ear drum (or some ear part, LOL!).  Since he has the trach and vent, he already was able to be put to sleep 'safely' so that was less of an issue than with a bipap kid. 


We were amazed at how quickly he was finished.  We had settled in to a room with snacks and books and before we had cracked a bag or a book, he was done!  Yes, he was cranky afterwards.  The nurses told us that coming out of the anesthesia was the worst part of the whole thing.  I guess the little ones are the worst because they want to thrash around and are disoriented.  Not the case with our kids but it was still something that Casey had to work out of his system.  We were able to feed him juice-a little bit, right afterwards.  The nurse recommended us to go slow since he may be feeling a bit naseous. 


Since that time, Casey has had at least one BAD ear infection.  We were seeing drainage and we were thinking that drainage was good because the fluid was coming out but NO, drainage is bad.  He got antibiotics after seeing his ear guy.  He also is to use the Ciprodex drops for a week ANY time we see drainage.


We see drainage a LOT!  It seems like every 3 weeks or so we're back on the ciprodex.  Sometimes he claims his ears hurt, but I think he may just be complaining to complain. 


In July, I think, he had a BAD ear infection so we went to see the doc, etc.  We could see some weird gunk in his ear.  Come to find out that he had a bad infection and that the tube had migrated out of where it should be and was stuck-thus the infection (?) 


So, that tube is out.  That is always his problem ear.  That's the one that he says hurts and does get drainage a lot.  I'm not sure what we'll do from here.  Maybe if Casey ever has to have another surgery we'll do double duty and get another tube put in.  It only lasted about 6 months.


Our doc never told us to take any precautions with his ear.  He said he doesn't think it's necessary.  I'm not sure that I agree with him.  Since our guys can't shake their heads or put their fingers in their ears after a shower or whatever, I think that the water could kind of sit there and 'stew'. 


We have the wax stuff that we usually use when he has a shower or a bath.


OH, when they did a special test after his surgery they said his hearding tested very well. 


We also had done a test in a booth type thing and they could tell which side was impaired a bit.  Even though Casey is non speaking, they could tell by his eyes, face when a sound was heard in the side they had put a sound to....





May 18: 2002  Had a consult with DR. Swabbarhal, orthopedic surgeon,  at DR Bach's conference in NJ.  We brought down his x-rays so he could check them out.  DR S is the one who did MJ's surgery and we know he's got a great reputation.  I was hoping that DR Bach would be in with us but he was in the conference that was still going on during the consults.  He looked at the x-rays and quickly took a look at Casey's back.  He said that it was a significant curve, but we should wait for him to get older and grow.  He suggested an underarm brace like the Boston Brace to use to help support him and hope to delay the progression a bit.  He said that in Duchenne's Muscular Dystrophy bracing doesn't help, but it may with SMA.   I thought for sure that he'd say to get the surgery since he is at 83 degrees.   He did suggest going from the pelvis up to the top instead of just doing the top part. 

Wheelchair trial



February :  Casey had another appointment at the ortho clinic.  Julie, Casey and I went.  First we had to get another set of x-rays done.

February :  Casey, Gene and Julie went for Casey's stress x-ray at UHC.  I guess it was a fiasco because his old x-rays weren't there like they were supposed to be.  Anyway, Gene and DR Aronssen had to sit Casey up and try to "correct" his curve.  It turns out that Casey is not as flexible as we were all thinking.  They corrected him from about 90-70 degrees.   It means that the surgery will be longer and more involved than we were hoping for.   Casey was a trouper through the whole thing.  He didn't like when they were pushing on him, but he did fine.

February :  Casey's top front tooth came out!!  I almost think it's a permanent one, but it couldn't be, could it??   He's only 6??

February 20:  DR DiMichele came this evening to look at Casey's eyes.  He saw the same little cyst-like things that I saw.   He thinks it's a form of conjunctivitis.  He'll call in drops in the AM.

February 21:  Casey has the same drops as Colin had.  They are Trimethoprim/Polymyxin B.  He's to have 2 drops in each eye 4 times a day for 5 days.





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