The Pulling of the Tube (most likely)

So, there have been some questions about what this means, why now, what happened, etc.  So here goes with an explanation.  I am going to try to keep it short and simple.  It is late, and I need sleep.  :) The three kids will be up early tomorrow I am sure. 
When Claire's tube was placed at five months, I was told they hoped to be able to remove it by 12-18 months.  It was thought her dysphagia was related to reflux/infancy (like they say Ryan's is although they are getting smarter and don't say it to me with as much certainty since I have the rare) :)  We now know that Claire had a separate condition of cricopharyngeal achalasia, which most likely was the reason for the swallowing dysfunction.  That being said, Claire has progressed over the last year to the point where she eats and drinks honey thickened liquids solely by her mouth.  Her tube is only used for medications, not to feed or hydrate her in any way.  It has not been used for those purposes for over 6-9 months and probably wasn't needed to feed her for over a year.
We had been told in the past to leave Claire's tube in until she was able to tolerate liquids (non-thickened) for a least a few months (some said six).  A tube is nice to have with the stomach flu, when you have a sore throat, won't drink or after surgery/procedure.  So we just kept it.  No reason to pull it if it wasn't hurting anything or causing problems.
Well, there is the catch.  Back when we were still in Cheyenne and seeing the doctors in Denver (about 15 months ago) and Claire was still using the tube for feeding and hydration, she was struggling with vomiting et al so they doctors felt a bigger tube was needed.  That is common with the "fast" growth of children.  So we got a bigger tube and all was better.  Fast forward to six-eight weeks ago.  Claire started complaining that her tube hurt.  She was itching it.  She played with it more.  We started noticing some film and redness.  So we brought her into the pediatrician about three weeks ago.  She told us it could be a fungal infection, which could be treated with an antifuntal cream.  She also brought up the idea of it being time to remove the tube.  We decided to wait and see if the cream solved the problem.  It didn't.  So Claire now has more "scar tissue" growing.  It is the type of tissue that when irritated grows more.  What we think is happening is that the tube is "leaking" and that is irritating the skin and causing the symptoms.  So we have a number of options:

• Take her to a surgeon at Arkansas Children's who will "burn" off the excess tissue and then put in a larger tube and hope this does not return. 
• Put in a larger tube and leave the skin as is and hope it doesn't continue to bother her
• Pull the tube and let the "hole" heal and there will be nothing left to be irritated. 

As Claire is not using the tube for feeding and has not been for some time, she meets the guidelines for tube removal.  It was fine to leave in while there were no problems but since there are now it makes sense to pull it.  There is little chance of her needing it again as they do not feel she will regress.  So the plan is to remove it this weekend when we can be around (and the pediatrician is on call and working on Monday) and see what happens.  We just pull it out and watch the hole close.  If it doesn't close off in 48 hours then stitches might be needed.  No operation, no anethesia.  I have been changing the tubes every three months myself so this is not that much different (just don't put another one in). 
While this is a HUGE step for Claire, a big decision and very exciting, I want to be sure everyone understands that this does not mean Claire is "cured".  Again, her day to day life will be very much the same, just without a tube.  She will still need thickened liquids.  We will still have to watch her closely when she eats, etc.  There is no time table for when she will not need thickened liquids, she will just be like the other kids who have thickened liquids for whatever reason.  For more information on the plans for Claire in regards to therapy, thinner liquids, etc please see the notes before this one.  Claire is one complex kid even for the specialists.  Only time will tell what the future holds.  For now, she is one happy, bright and increasingly "terrible" two year old kid.

The ENT Doctor's Plan

Well, we saw the ENT for the first time in nearly four months at the end of March.  As she had been having some congestion as well as numerous ear infections, he felt it was time for another scope and another set of ear tubes.  This was done at the end of March.  He then saw Claire again at the end of April. 
The scope of her airway/swallowing pathway showed that the muscle remained dilated.  This is a good sign, and we should not have to do surgery in the near future.  He had asked us in March to do a trial of nectar thin liquids.  Unfortunately, this did not go well for Claire.  She ended up with a severe sinus infection within 24-36 hours of the thinner liquids.  We returned her to the previous level of thickened liquids and this is where she remains as of now.  The doctor has decided to give Claire a "break" as he feels he has pushed her very hard.  He wants to give her body time to grow and "catch up" with all of the "stuff" he has done to it.  He will then do another swallow study in August (hopefully she will cooperate a little more that before) and then meet with him.  We will see where we go at that point. 
Claire will also see a neurologist per his and the allergist's suggestion.  Our pediatrician is not convinced this will be helpful nor will they find anything but after relentless urging she decided to send us.  We will see them on June 7th.  Who knows what that will bring.  Claire is "complex" per the doctors, and we don't even see residents anymore.  She is also a grey area, where there are many questions and very few answers.  They could decide to do nothing in neurology, or they could decide more tests.  We shall see.  However, the doctor's do not expect to find any type of cognitive deficit, this would only be to find a reason for the hypotonia (weak muscles) throughout her body or potentially her swallowing difficulties.  So we will be off to yet another doctor...... hope they are nice.....and not a long wait......and please, please, please have comfortable chairs.  :)

Therapy Update

Claire is progressing well with her therapies.  She was "re-evaluated" in occupational therapy in March, and it was found that she qualified for therapy to improve her fine motor skills.  This means she will continue in OT until at least next March.  She loves, loves, loves her OT (Ms. Paula) so I am excited about that.  I am also excited as this helps with alot of activities that help her to be more independent (dressing, etc) as well as activities for school (using a crayon, scissors, etc). 
Her speech has come a long way as well.  She has met all of the goals made for her at her evaluation last August.  Now they are working on some new goals, such as putting nouns and verbs together.  Her speech therapist is not sure if she will qualify when she is evaluated again in August.  At three, articulation is considering when evaluating for therapy and the therapist feels Claire will be lacking in that area.  She still can be very difficult to understand.  So we will see.  For now, Claire will continue with speech therapy so she can get as much assistance for maximum improvement as possible. 
Her physical therapy is progressing nicely.  She now goes once a week for an hour.  It is possible she will no longer need physical therapy after she is evaluated in August but that is not a given.  As she will be three in August, what she needs to be able to do also changes and increases.  Only time will tell. 
All in all the therapists are very, very happy with her progress.  She is a different child than the one who started back in August.  She has grown so much, and we are very, very thankful for the wonderful therapists who work with her each and every week.