Pulmonology & EFL Walk

Trace had an appointment last week with his pulmonologist Dr. J.  We discussed Trace's inability to fall asleep, inability to stay asleep and oxygen desaturation during sleep.  Trace was acting quite aggressive and I had to keep him in his stroller most of the appointment as he tried to bite me, climb out, bounce like a crazy person and scream.  Dr. J said the aggressive behavior could possibly be due to lack of sleep.  I'm thinking I can totally use that as an excuse for my own behavior - I mean I'm not getting any sleep either :-)  Then she tells me "he's not the same child I saw in July, he looked so good then".  I don't know if she meant physically, mentally (due to the crazy behavior), or what.  I didn't ask, honestly because I didn't want to know.  In my eyes he looks good.  I just dealt with the whole regression issue a few weeks ago and didn't want to go there again. 

I explained to Dr. J how it will take up to two hours for Trace to fall asleep some nights.  She started him on Melatonin before bed to help him fall asleep easier.  I know it's one more supplement/med, but if it helps him that's all that matters.  Next we discussed how he wakes 4 to 8 times every night and how he's been desatting.  Brief history here - Trace was previously on oxygen while sleeping due to oxygen desaturation during the night.  He was doing well in late summer and had good results from his sleep study.  Dr. J and Dr. K decided to have us wean Trace off of oxygen and see how he did.  He did well while weaning O2 down and off.  However the last couple of months he was waking more and more.  So much I decided to pull out the pulse oximeter and see if he was desatting.  He was and I've listened to it alarm over and over for the last 3 weeks.  Back to last week - Dr. J has decided to put Trace back on oxygen.  She believes he's waking due to his brain forgetting to tell his body to breathe - central sleep apnea.  Oxygen should help this from happening. 

She examined Trace next - just the ordinary stuff - heart, lungs, ears, nose & throat.  He was much calmer then and happy to get out of his stroller.  He showed her where to put her stethoscope (several times) - he loves the stethoscope!!  Next was ears, nose and throat.  He's been fighting a cold since last Monday, so nose was runny, ears didn't look so good and throat who knows.  He didn't want to open up and we didn't want to upset him.   

All of this lack of sleep is really not good for Trace's brain development.  Trace already has problems with his brain function - seizures/epilepsy and developmental delay.  We don't need anything extra hindering his brain development.  I'm really hoping the O2 helps him.  His first night on oxygen/melatonin he fell asleep in 30 minutes, woke up 6 times, and desatted only a few times.  Last night he feel asleep in 30 minutes, woke up 4 times and desatted only once.  Please pray it keeps getting better and better! 

Trace had a big seizure yesterday evening while we were playing on the floor.  It's been a long time since he's had a seizure of that severity.  I'm hoping it was caused by this continuous cold and nothing else. 

We will be walking for Trace this Saturday, February 4th at the Energy For Life Walk: Houston.  Please consider joining or making a donation to Team Not Without A Trace.  Thanks to all who have supported us by joining, donating, raising funds/awareness and attending our fundriaser!!  The Team Hudson / Team Not Without A Trace Fundraiser benefiting the United Mitochondrial Disease Foundation was a huge success!  It was so amazing - we raised $28,000!!!  This money will fund much needed research to help find a treatment and eventually a cure for Mitochondrial Disease.  Thanks again for all your support!!

Hope, Love, Courage &Faith,

Laurie