Saturday, August 25, 2012

The Ear Blowing Returns

A few weeks ago Logan got a cold.  We all did.  As we feared it would it spread into his ears and he got another double ear infection.  Although we did not have an appointment to go back to the ENT until late September we were back early for cleanings.  He was put on an oral antibiotic and the cold cleared up.  A few days after the ten day course and with a couple of cleanings his ears were looking almost better too.  However, the fascination with blowing in his ears has returned and he is far more determined to fight our efforts to stop him this time.  Every time I hear the whistle of his ear I feel the anxiety rip through my body.  I am so worried he will continue to give himself chronic ear infections.  I worry for what it does to his hearing both long and short term.  Even if he improves in the future all the infections now could permanently delay speech skills as he is in such a critical language learning period right now.  I see the distress the ear infections, drops and antibiotics cause him but cannot help him understand all the effects of his ear blowing and why he must stop.  I cannot help him see the connection between his pain and the blowing which seems to satisfy him so greatly. It is heart wrenching to spend an hour stopping him from blowing in his ears just to walk away and hear him do it again or to hear him wake in the middle of the night and start blowing again.  I know children can live happy lives both blind and deaf but if I can do anything to help him keep his love of music, enhance his chances of language acquisition, and keep him pain free I will do them.  I just wish he could understand why I am stopping him.
There is one factor in his favor this time however.  Logan's postnasal reflux has greatly improved so he is getting less food trapped in his nasal passages.  This means there is less food and milk getting to his ears.  I am hoping that is why he got (mostly) better so much faster this time even though he is determined to whistle a tune out his ears by September.  A not so great development, he can now get air out his ears even when his mouth is open a bit.  Talented yes, but not good for him.
In late September Logan will have a joint MRI, more advanced hearing test, and ear examination all under anesthesia   A little while back we went to our local Children's Hospital hoping for further advice on Logan's "skill" and they had actually seen this before and recommended a full look at all his face structures to look for a patenous ear canal (always open) which we suspect at least on his left side. They will also check for any other abnormalities we should be aware of in his internal facial and ear structures.  They are also going to get an updated look at his brain and since he will be under anesthesia it should be a bit better than the one done when he was a day old because he had moved a bit during that scan.  To make the most of his time asleep we were also hoping his occularist can come in and make the molds he has been wanting for months but he will unfortunately be out of town.  In the meantime Logan continues to be without conformers that work for him.  It is such a rare specialty we don't have a lot of care options in this area.  Currently we can't even put Logan's conformers in for even a bit until they fall out because they are now so loose Logan easily pops them out.  Not only that but now that he is eating finger foods so well the last time he had them in he pulled one out and immediately tried to eat it like a Gerber puff.  Yum, yum!
We are hoping for some good news in September.  Until then I hope Logan stops taking advice from Jiminy Cricket...
"When you meet temptation and the urge is really strong, give a little whistle..."
No Logan, please don't.

Summer Vacation

Logan, Reyna and I headed back to my home town this summer to visit with my side of our family.  It was so great for the kids to be able to spend time with everyone there and all truly went fabulously.  The only downside was that Seth was not able to join us because he had to work.  Hopefully next year he won't have to use all his vacation time for surgeries!  It would be wonderful to spend it as a family having fun instead.  I am sure Logan would greatly appreciate the break too!  We'd love to be able to travel to see Seth's side of our family as well.  It is so hard being away from them all and when we are able to get together it is terrific.  Both kids were healthy for the entire trip as well which made it even better.  Below are some highlights of our visit.

New Skills

With Logan's huge leap in his growth (recall toes out of PJ's...) and health improvements came the development of new skills.   He began trying new things at school and is really enjoyed his new explorations.  His biggest recent physical development is that he is  finally comfortable bearing weight on his feet and soon after began to stand with support to lean upon.  He then gradually needed to lean less and is now able to hold on with just his hands.  After about a week of standing like this he learned to pull up in his crib.  He can now frequently be found awake until two or three in the morning because he is so busy practicing pulling up and getting down in his crib.  Over and over.  Just recently he started cruising around his crib in this way, adding to the skills that just won't let him sleep.

Summer School!


He also began making some gains in speech and is saying some new consonants.  So far in addition to the vowel sounds he make the sounds for b, l, g, h, m, n and p.  He also makes some excellent growling noises.  He is yet to say words with fully clear intent and still seems to struggle with receptive language but it is great to hear his babbling and baby talk start to take more shape.  We are very hopeful for language development.  We also continue to do a few basic signs with him hoping these might also take or will be a mode of communication for him if oral language is not.
He also has grown in his abilities with eating foods.  He is no longer interested in purees but in addition to eating meltable baby foods like Gerber puffs he is able to eat soft foods such as avocado and pasta.  About half of it still ends up in his lap but he is getting better all the time and seems to really love eating all the new foods.  The hole in his palate to his nose and his postnasal reflux are still issues but less so than in the past.  Our little baby is becoming a full on toddler!

Friday, August 24, 2012

Time for a new bed...

So he managed this buckled...

I think he surprised even himself

Man I'm good!
Guess it is time for a new bed.

"Can I escape?"

Definitely time for a new bed.

We had only avoided the switch to the crib until now because the angle of his rocker bed is so much better for his reflux.  We've tried angling the crib but he moves so much in his sleep sometimes he'd end up with his head down which is even worse than being flat.

But yeah, time for a new bed.

Our Mighty Man

This summer Logan had a scope of his upper GI and pH impedance test completed. This was to get a better idea of the severity of Logan's acid reflux and to check for any damage or deformities of his upper GI tract.  Logan needed to be put to sleep (again) for the scope portion of the test.  Prior to the anesthesia Logan was having a great time playing despite having no breakfast that day.

Gymnast feet!
After the scope they placed a special tube down his nose into his esophagus.  This had a sensor which measured the amount of acid that was making its way into his esophagus from his stomach.  The probe was attached to a small device which would show the pH level being read internally.  We would also push buttons o this device when he showed possible signs of reflux (i.e. crying, arching, fussing). The small tube needed to stay in for about twenty four hours during which he pretty much could eat, drink and sleep as he normally does.  He did need to stay in the hospital for the full test since he was so young.  He also had to have a set of the dreaded arm braces back on so he could not pull the tube out of his nose.  He also had sensors for his vital signs and an IV which needed to be protected from being removed.  At first he actually did not seem too bothered by it all, although he liked having snuggles and his own bed from home.

Notice the IV is really well protected.  We weren't letting the nurses
 take any chances of needing to find a new vein this time.
Even though Logan wanted his own bed from home Reyna loved his hospital bed.
 She was pretending to be a bear and would say, "Lock me up like cage!"
Next weekend instead of the playground we are going to the local jail for fun.
All seemed well up through the evening and Logan mostly wanted to sleep so Reyna and I headed home for her bedtime.  Seth was taking the night shift at the hospital with Logan.  In the morning the probe would be removed around ten or so and Logan would be free to go home.  Late in the evening Seth went ahead to sleep since Logan was sleeping so well.  Around two in the morning a nurse checked in on Logan and he was still fast asleep.  However she came back just twenty minutes later because his monitors were no longer reading information.  In that mere twenty minutes she found that Logan had awoke, Houdinied out of his arm bands, pulled the tube out of his esophagus and out through his nose, ripped the tape off his face, removed the respiratory sensors of his chest and removed his pulse/oxygen monitor.  He managed this all without waking Seth.  Needless to say that ended his test and Logan got an early morning discharge.  His little way of saying "I'm done now thank you all very much" that earned him this shirt:
("Tiny & Tuff")
Luckily they got enough information from the time he had with the monitor and from the scope.  As suspected he does have pretty significant reflux but the great news is that it didn't appear to have done any damage since he has been on medication since he was really little.  He also had no significant abnormalities and certainly none that would require a surgical fix.  He will just need to continue his medicine to keep him comfortable and prevent any damage.  

Happy Birthday Reyna!

We celebrated Reyna's third birthday at a local kids play center.  Nearly a year prior we had gone there for an evening and had won a drawing for a free birthday party.  This was such a wonderful gift for Reyna as we probably could not afford a party otherwise.  We had met up with one of my good friends there who has a little boy Reyna has been friends with since she was only three weeks old.  In fact her mother and I were pregnant together and our due dates were only one day apart, but her son made an extra early entrance.  Since she was with me for this great surprised we talked about possibly doing a party for both of the kiddos together since they are only about a month apart.  Then almost a year later it worked out exactly that way.  They both had a great time.  Since Reyna is getting a little older I was glad she was able to have a party at a favorite place and invite some friends to celebrate with her. 

Happy 3rd Birthday Reyna!

Thursday, August 23, 2012

Understanding way more than we thought...

After two months of a double ear infection Logan still was not eating well.  He was down to about half his normal intake of bottles and would barely eat purees if at all.  We gave it some time thinking it was because he was still getting better but even as he seemed to become more healthy he still didn't want to eat much at all.
So one evening as Logan played on the floor Seth and I had a serious talk that maybe it was time to surrender to the g-tube.  It was so difficult to even think about but at least, for this purpose, he could still enjoy some food by mouth.  It would just ensure he got his calories back up.
Funny thing though... the very next day Logan began eating like crazy.  He ate more per day than he had ever eaten before and prior to this day he rarely finished a full eight ounce bottle.  Instead he usually at four to six ounces per bottle.  Now he was regularly eating eight ounces every bottle and at times he was taking a refill and eating amounts like eleven or twelve ounces.  His all time record to date is fifteen ounces in one feeding. He began to put on weight again and grew and grew and grew.  He put back on the two pounds he lost and since then has put on two and a half more.  He also began eating meltable finger foods for the first time and loved them.
Logan had worn the same size pajamas for so long that when he needed thinner ones for summer I bought him several pairs in that same size because we could have fit two of him in next size up.  Within two weeks he needed that next size up proven by popping his toes out of a pair during the night.  He is now fitting in even the next size above that.  This all happened in the span of only about two months of being healthy.  Logan is just remarkable and apparently greatly distastes the idea of a g-tube.  

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.

Thursday, August 9, 2012

Up on the Rooftop

In March of 2012 Logan had surgery to close his cleft palate.  We were quite nervous for the little guy and dreading the pain it would put him through as his most complicated surgery to date.  However we were also excited for him because it would allow him to do so many new things. (Although food out the nose may become a lost art...)  With his palate open Logan could not experience the joy of foods beyond liquids and purees even though he was already fifteen months old. His ability to make sounds was limited to vowel sounds, speaking whale, and the consonant m.  (His ability to scream however remained unhampered.)   He also did not have the ability to suck meaning his bottles were still delivered fully by us squeezing the liquid into his mouth with his adaptive bottle. He also needed all of his liquids thickened to prevent aspiration and the surgery gave hope this may no longer be necessary.  
Logan was actually in a really great mood the morning of the surgery despite having to get up early and skip his morning bottle.  He played happily until it was time for the doctors to take him.

Since Logan was getting older and more aware Seth was able to go back with him when they put him to sleep for the surgery.  He just needed to....
(Choose your sappy punchline)
A) Be one with the marshmallow
B) Put on his space suit
C) Dress up like his third grade lunch lady
D) Look like a dingus

He is wearing his ball cap too...  Pick D! Pick D!

My parents were in town for a visit and to help out with the surgery so Reyna was able to sleep in that morning.  She was also able to have fun in places other than a hospital room during Logan's stay. (Although over the months we have found several creative ways for her to do so while she has found creative ways to get every possible germ in the room on her body.) Reyna and my parents all joined us at the hospital shortly after Logan's surgery began.  We tried to distract ourselves in the hospital library, cafe, and gift shop.  Trying not to think about the surgery was as simple as trying to force an annoying "one hit wonder" out of your head.  Then it became as festering as MMMbop when the surgery went an hour longer than the already generous time frame.  Luckily just before I went into panic mode Logan's surgeon came out and shared the details.  From what he shared the surgery went quite well and he felt confident the repair was going to hold together firmly.  The one downside was in order to ensure this strength he had to leave a small hole at the front area of the palate.  The good news was that this would likely not impact speech.  The downside was that feeding would still be impacted, although likely to a lesser extent.
We hold our surgeon in the highest regard and know he did the best work possible.  His work on Logan's lip proved to be exquisite and we knew his palate repair would be as well.  As he shared the details it became clear just how challenging Logan's repair really was.  Leading up to the surgery he consulted with several other surgeons including having three others physically look at Logan's cleft for their input.  When reviewing the surgery with us he shared that even during the procedure he consulted with another surgeon for additional feedback.  Logan's surgeon travels internationally each year to perform cleft surgeries and other plastic surgeries in areas of poverty.  Even with his vast experience he has shared on several occasions that Logan had one of the most unique clefts he has ever seen.  Following his surgery he shared that the width of Logan's palate was the widest he had ever repaired at three centimeters across.  He commented with a tone of disbelief that he once considered a two centimeter clefts to be wide.  Taking this all in account we were so grateful that his palate was able to be closed fully with just one small gap.  Once again our little guy found a way to be especially unique, our one in a billion (or more).
When we first were able to go see Logan it was a relief but also rather difficult.  There was the typical swelling but beyond that it was clear he was in pain and possibly hungry as well.  Although the doctor warned us there would be a string through his tongue it was still jolting to see.  The string was there in case of any sudden swelling as it allows them to pull his tongue out of his mouth to provide a clear airway. Not the stuff dreams are made out of, at least the pleasant ones.  Although grateful to be able to hopefully give him some comfort, it always hard to also see your child look so distressed.  Soon after I arrived though they gave him a small dose of morphine and he relaxed.

Although he was given morphine for pain it took awhile for him to be transported to his room and then it seemed to take forever for the nurses to get all his orders.  Until they had his orders they could not give him more medicine.  By the time they had the orders Logan was so distressed that he pushed out blood into his IV and it could no longer be used.  So now he was in pain and without a way to get more morphine.  What followed goes down as the hardest experience with Logan up to this point.  There had been bad times in the past but nothing like the next hour.  His first IV that was lost was in his ankle area. His nurse proceeded to try the other ankle and failed.  Then she tried another location.  When she failed again she asked another nurse to try.  As they continued to try several other places and to repeatedly blow veins Logan was in such intense pain and discomfort that he needed to be held by Seth and I as well as at least another nurse as they made him a human pincushion.  After trying seven different locations (yes seven) they decided they would call up one of the nurses that puts in IV's during helicopter transports.  Eventually someone else came but it was a NICU nurse instead.  She tried another location and failed.  Up until then they were avoiding putting one in his head since he was so mobile and had a good chance of loosing it again but they finally gave up and the NICU nurse got it to take in his scalp.  Then Logan finally got some morphine.  At least the nurses were wise enough to give him what they called the "good dose" and he was quickly comfortable and asleep.  

The relief of seeing him finally out of pain was indescribable and at first I thought I might faint as it washed over me.  I know during that time I could have stepped out of the room, but I would still know the pain he was in and I truly feel that having Seth and I there to talk to him and to have familiar hands holding him helped at least a little, even though I still felt so terribly helpless watching him. It took months after this experience for Logan to not be startled to screaming by sudden movements or touches.  It was heartbreaking.
  Over the next couple of days Logan gradually improved and was able to eat a little bit from a syringe.  After his second night in the hospital he was actually eating pretty well, taking about half of his normal amount and sometimes even more.  We were so impressed with our little fighter and felt for all he had been through, and for having his mouth full of stitches this was simply amazing.  He was also still rather playful at times and it was so wonderful to hear him laugh again.

Each day his IV got more tape and glue.
There was no way we were going to let this IV be lost.

Despite his remarkable progress, as with his lip surgery, the hospital doctor (who I happened to see was the same doctor from his lip surgery, not because he came to actually see us, but because I caught a glimpse of him consulting with Logan's nurse) said Logan had to eat the full amount he was eating at home prior to surgery before he could go home.  We prepared ourselves mentally to be there for at least another week.  Yet then the most wonderful thing happened.  Logan's surgeon checked in on him and told the hospital he could go home if he was was eating at all from his bottle.  Which he was doing!  Rather well!  So after three nights in the hospital Logan got to come home.  There we weren't even a little shocked that his recovery went much faster than it did when he was stuck in the unfamiliar surroundings of the hospital after his lip surgery.  A surgery that typically has a much faster recovery than a palate repair.  A surgery that for many kids is outpatient.  When we left the hospital I was dying to skip past the jerk hospital doc with Logan in my arms but (as usual) he was nowhere to be seen.  I skipped anyhow.  Our baby was home again.

Oh, and food out the nose...not a lost art.  More on that soon.