Tuesday, August 21, 2012

Differently Abled

Following his palate surgery Logan decided to be very politically correct by proving he is differently abled.  After Logan's palate was closed all went pretty smoothly at first.  He actually improved each day and did better with the arm braces and eating than we thought he would.  However, after about two weeks he started to have ear drainage.  He was confirmed to have a double ear infection and both oral and topical drops were started.  However, even with regular ear cleanings at the specialists office, he did not get better.  Having his ears vacuumed out every few days and being subjected regularly to drops was not helping him get over the hypersensitivity to touch he developed after his palate surgery.  Also, although the eating was going rather well considering, he was having more food come out his nose than ever before and thick purees like pudding and yogurt had become impossible for him to eat.  We noticed he had begun to close his mouth and blow.  This seemed to help him clear his nose somewhat.  Yet he started to do it all the time, even when there was not food in his nasal passages.  Then we noticed what we thought was the whistling of air coming out his ears.  Yes his ears!  Like in cartoons!  We got down close to confirm what we were hearing and there was definitely air coming out.  You could even see the ear drainage bubble with his blowing.  
By this point Logan was in a lot of pain, not getting better with lots of antibiotics, and screaming at nearly every touch.  Seth let the ENT know that Logan was blowing out his ears and he responded with a passive, "Oh, that is odd" and finished the cleaning and told us to continue the antibiotics.  
Logan continued to blow more frequently and it became apparent that this was, in addition to helping him clear the passages somewhat, a self stimulating behavior as well.  Soon he was doing it all the time.  On his next visit to the ENT Seth showed the doctor the chocolate carnation drink that Logan had had for breakfast bubbling out his ears as he blew.  At this point the ENT took off his glasses and rubbed his forehead in disbelief.  Strange reaction for someone who was told this was happening just a few days before.  So much for believing the parents who spend each and every day with the child, the two people who know Logan best in the whole world.  
At this point he did try to come up with a care plan as he believed Logan could not get rid of the infection as long as he kept feeding the bacteria in his ears with his food creating a lovely breeding ground.  Funny enough the ear tubes put in to help prevent infection were actually helping food get into the ear canal (although this is still not something a typical child with ear tubes could manage).  
The ENT thought through various options but as this was a novel skill Logan had all could think of was perhaps having plastic surgery close the remaining hole in his palate so food could not get up there or doing a procedure not approved by the FDA.  For that procedure cosmetic filler (usually used for beauty enhancements) would be injected into his Eustachian tube to close it off and prevent liquid from getting to his ears.  As it was clear this was something he did not have previous experience with and as it was not an approved procedure we thought the best option here would be to close the palate hole earlier than had been planned.  So we called his plastic surgeon but because of Logan's large gap and structure he would need a bone graft to close the hole and this could not be done until he was older even when considering Logan's current situation.
We were devastated that this could not be done to fix the problem because by this point Logan was a mess.  He was so sick he cried and screamed all the time.  His ears were so infected that you could smell them when you were sitting next to him and he stopped making progress and even regressed in his skills some.  Since his surgery he had lost nearly two pounds, ten percent of his body weight.
Around this time he had his follow up swallow study to see if he would still need thickener in his liquids to prevent aspiration now that his palate was closed.  Due to an error in the administration of the swallow test they accidentally left out having him drink the liquid with no thickener.  This means we still do not know if he can skip thickener altogether.  However they did confirm he can cut back to half the strength of thickener he was already getting.  We tried purees to attempt to see what was going on there too, but Logan was so upset from being sick and subjected to eating in an unfamiliar seat and location that he did terribly, screaming through most of the test.
Well that was a huge letdown because when we called the surgeon he said that he could tell during his last surgery that Logan's mouth just isn't big enough to be able to do that procedure yet and he probably could not have it done until he was three years old.  Beyond that, he shared that it wouldn't stop the postnasal reflux anyhow because the soft palate does not completely close off that passage out the nose so it is something he will need to learn how to not do over time.  Although this made sense and he clearly explained it to ensure all the reasons why this was not a viable solution it was heartbreaking because our little guy was suffering so much.
Now we were faced with the terrible decision of what to do next.  We could try the non approved surgery.  At the feeding clinic they said he could possibly have a g-tube put in so food could not get in his nasal passage, but this would take away all the pleasure and experience of food with which he had done so well with up until now.  For blind children food is one of their primary sensory experiences and we were not ready to do that to him yet.
We kept brainstorming and thought of perhaps giving him water after all foods to help rinse out whatever food was in his nasal passages.  This seemed to help some and he needed ear cleanings a bit less often.  Another culture from his ear was also taken and he now had a yeast infection in his ear from all the antibiotics.  To clear this up he now needed two kinds of ear drops.  
After all this he was a little better but still had a double ear infection so we started to try to think of ways to stop him from blowing in his ears.  His PT suggested trying to get him hooked on a binky.  It was kind of humorous thinking we were trying to get a sixteen month old hooked on a pacifier, but it didn't take anyhow.  Candy suckers were suggested, but these were still way too much of a choking hazard to try.  Any behavioral training we could think of for his age and with his blindness seemed cruel (i.e. making a loud sound when he would blow).  He did not seem to understand the word no or any other similar wording.  We finally decided on putting our finger in the corner of his mouth when he blew air out his ears to break the seal he was creating.  We still weren't completely sure how he exactly got air out his ears, but this did seem to prevent him from being able to do it.
At first it did not seem to work at all.  We would stop him with our finger and firmly say no, but as soon as our finger was out he'd go right back to blowing.  Yet, after about two or three weeks (and two months total of a double ear infection and antibiotics) he began to seem to get it.  He started to at times even put his own finger in his mouth when he started to blow.  That was just adorable and showed some great cognitive learning too.  Soon the infection finally cleared up and Logan no longer needed oral antibiotics and regular ear cleanings.  He still takes both kinds of ear drops every day to keep things clear but this was a huge improvement.

Our poor little sick guy.

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