Tuesday, June 3, 2014


One of the first decisions we had to make was whether to trach or use a mask.  For us, it really wasn't much of a decision.  We felt that a trach would ventilate Noah better and be more comfortable for him.  Now that he is older, we have to decide if we want to decannulate and go with a mask for ventilation. There is a lot of things to consider before doing this transition.  First, we would have to completely change ventilators, going from an LTV 950 to a Trilogy.  This would involve at least a 3 day stay in the hospital where we would have to learn how to use a whole new vent and make sure that Noah could get adequate ventilation from this new system.  Then, we would have to get him use to wearing a mask.  This would involve getting him one to use while watching tv, playing, and wearing it at various times during the day to acclimate him to the feeling of a mask.  During this time, we would have to make sure his CO2 stays within the correct limits.  Once he has acclimated to a mask, we would then find the right one for him.  After finding the right mask, we would then let him use it while sleeping and schedule a sleep study to make sure his numbers are good while using the new setup.  Then, decannulation would occur.

We have mixed feelings about decannulating.  I would love for him to be rid of the trach.  No more trach care and swimming while going under the water are two huge advantages.  The disadvantages would be the long process of switching over to a new vent and getting him to wear the mask.  Plus, the trach is a visual reminder that something is different about his health.  Once the trach is gone, there is no way for people to see that he has any health issues, which could possibly make them less careful around him.  We would also have to change the way we check his CO2.  We would more than likely lose our Medicaid help.  We would not have all of the trach supplies, but would still have to have the equipment (the ventilator, CO2 machine, Oxygen and the pulse ox).  Insurance does not cover all of this completely and we would have to spend more out of pocket to keep all of these machines.  It is going to be a very long process.

Another decision we have made is whether to do the diaphragm pacer surgery.  This was not that difficult for us to decide.  This is not our decision to make, it is Noah's.  A diaphragm pacer would be implanted on his diaphragm.  This device would be used in place of a ventilator.  At first, it sounds like a perfect idea.  So what are we waiting for?  I have read that there is a small chance that his diaphragm could be damaged during the surgery, causing him to require 24 hour ventilation.  I realize that the surgery has greatly improved over the years and the chance is small, however how in the world would we be able to live with ourselves if our decision caused our child who is only ventilated about 8-10 hours a day during sleep to be required to be ventilated 24 hours a day 7 days a week for the rest of his life.   At this point, we are not comfortable making that decision for him.  This is an invasive surgery and I have mixed feelings about doing this.   We are not willing to take the risk.  As he gets older, I am sure he will have questions and have his own ideas on how to take care of himself.  My job is to present him with the information and help him make an informed decision.

One of the big decisions we face now is school.  Noah is extremely bright and loves to learn.  I know he would do well in school.   The problem is having experienced people there who know what to do in case of an emergency.  I really do not like the idea of me going with him and sitting there all day, every day.  My goal is to make him more independent and realize that there are other people who can take care of him.  I am having so much trouble trusting people with his care.  It terrifies me that even the most experienced hospital personnel have never heard of CCHS and really do not understand the seriousness of the disease so how is the school system suppose to be able to handle this?  I can train them and explain things to them but ultimately I know that something is going to happen at school that could possibly endanger him.  A simple headache can mean his CO2 is high.  He has trouble regulating his body temperature sometimes so during recess a simple complaint of being too hot or too cold could be ignored.  During standardized tests the students are allowed to rest when they are finished with their tests.  Both Beth and Hannah have told me that they have fallen asleep waiting on test time to be finished.  This can absolutely NOT happen with Noah.  Those are just a few things I have thought of when thinking of school.  Unfortunately, there are not many cases like his so we really have no model to follow.  I guess we will have to figure this out as we go along.  

Once we pass the school hurdle, we then have to decide how to allow him to care for himself as a teenager and then an adult.  How can he have his privacy as a teenager when he wont even wake up when his ventilator alarms?  I'm sure he wont want his mommy or daddy watching over him while he sleeps as he gets older.  What about college?  How is he going to be able to go off alone and live in a dorm?  One of the huge dangers of CCHS teenagers and adults is drinking.  There have been instances where people with CCHS have drank too much, passed out and died.   Drinking is always serious but for people with CCHS it can be deadly. 

These are just a few of the decisions we face now and later.  I try so hard to be prepared for anything but I know that inevitably something will happen for which I am not prepared.  This thought terrifies me.  The fact that the decisions we make for him can impact the rest of his life is a huge responsibility.  I always use to think that CCHS was so much harder when he was younger and that things should get much easier the older he got.  I'm not so sure about that now. 

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