Medical Update

The Big Texan on our way
from Las Cruces, NM.

Lukasz’ palate revision last month went well. He was excited to have two therapy dogs visit him. His speech therapists immediately saw improvement in his speech, which was the goal. Of course, these improvements are only noticeable by his family, close friends and therapists but we are hopeful that practice will make his speech more intelligible to the general public.

The more concerning update is the result of his sleep study in January. Last week, Dr. Mitchell, Lukasz’s ENT told us that Lukasz stops breathing 13 – 15 times an hour.  Severe sleep apnea.  We knew he had some apnea because he always snores and it is clear he struggles to breath. Lately, we have noticed that he sleeps longer than he used to and wakes up less energized. Not to mention the ongoing issue we have with Lukasz’ weight. He just can’t get above 32 pounds. Dr. Mitchell stressed that his weight issues could be related to his sleep apnea. Apnea of 13 to 15 times and hour demonstrates a great deal of effort being used by his body at night.

It never occurred to us but Dr. Mitchell told us it is not uncommon for children with craniofacial differences like Lukasz’ often develop sleep apnea as they age because of crowding.  The right side of Lukasz’ face and inner anatomy will not grow so his airway starts getting smaller and smaller. He showed me the back of Lukasz’ throat and I was shocked to see how tiny the opening to his throat has become. Much smaller than I remember.  If it is so small now, how much smaller will it get as he gets older?  I forgot to ask.

I looked in his mouth every day during his recovery from his palate revision but never paid any attention to his airway, just his incision.

Dr. Mitchell told us we had three options to improve his apnea:

1.     CPAP. This is what we anticipated would be prescribed before the appointment.  Lukasz’ dad has one and my dad has one so we know how much they can help. Dr. Mitchell the best option to start with. 

2.     Remove part of his tongue at the back of his mouth. They would do an MRI of the tongue to find out how much they could take or if they could take any at all.

3.     Tracheotomy.  I really do not want to see that happen to Lukasz. I know a lot of kids with Lukasz’ constellation of issues have had one since infancy but it would just hurt me to see him get one at 5 years old when he is aware and would have to adjust to having it. If he’d had one since he was a baby, it would be a part of him he was used to and he would not remember a time without it.  But if it comes to this, we will, of course, do what is necessary for his continued growth and brain development.

So, we are starting with a CPAP. Dr. Mitchell is optimistic that it will work for Lukasz. And we are hopeful, too.