Can't sleep

It is way past my bedtime right now and the reason I am up blogging  is because I can't sleep.  This doesn't happen to me often.  I have never been one to have problems falling asleep.  But tonight, I have a lot on my mind.  It's kind of ironic.  The thing that is on my mind is going to keep me from getting much sleep tomorrow night.  It would have been nice to sleep well tonight.

John is going for a sleep study tomorrow night at Texas Children's Hospital.  This is not something that is new to us.  This will be something like our 16th study.  The reason John hasn't been able to have his trach removed is because he has sleep apnea.  Some of the apnea is obstructive, meaning there is something in his airway blocking his airflow on occasion, but the majority and most severe of the apnea is central.  This means that his brain simply doesn't tell him to breath at times.  It's not all night, but it is often during the night.  There are many factors that determine how bad his apnea is each night. Some nights it's extremely bad, and some nights it's not bad at all.  But we haven't been able to pen point exactly what causes him to have more apnea on certain nights.  For this reason, he has to keep the trach in order for him to sleep with ventilator assistance at night.  The machine breathes for him in the event that his brain doesn't tell him to.  This keeps him from waking several times during the night, allowing him to get a good night's sleep.  So because of this very long explanation, we have to go periodically for the doctors to assess how well he is sleeping and if his apnea is still severe enough to require a trach.

There are a few specific things I ask for you to pray about.

1.  Pray for John during the "setup" process.  This is when they attach what seems like 1000 electrodes to John's head so they can read his brain activity during his sleep.  No it's not really 1000 electrodes, but it is a lot and it seems to take forever.  They also attached various other belts and wires to different parts of him all in an effort to measure exactly when he stops breathing during the night.   In the past, this has made John very upset, to the point where it took a long time to get him calm enough to fall asleep.  Pray for him to stay calm during this process and to fall asleep quickly and easily.

2.  Pray that sleep is not hard to come by for either of us.  We have always resigned ourselves to the fact that we just aren't going to get much sleep while we are there.  John wakes a lot during the night and tosses and turns and this keeps Tommy and I awake since we sleep in the room with him.  It makes for a very long night.

3.  Pray that the night passes quickly for all of us.  I will be ready to get him home in the morning and get all of the junk washed out of his hair so that he and I can lay down and take a nap.  Hopefully he will be able to go to school after his nap.

4.  Pray for me.  Tommy and I have been together for every one of these studies.  John has always slept in a crib in the past so that leaves two beds available for both of us to sleep. This time he will be too big for a crib so he will likely need a regular bed.  This will leave only one extra bed.  So after we get him settled in for the night, Tommy will come home and sleep in our bed, while I stay there to sleep with John.  Pray for me to have patience and strength to make it through the night by myself.

5.  Lastly, please pray for the results to be positive.  We won't get these results for a week or two after the study.  We are not overly optimistic about them.  We have gotten our hopes up so many times in the past and have been disappointed.  So we try not to the think about the results and just focus on getting through the night.  We are very doubtful that his apnea will have improved enough to have the trach removed (although we know God is still in the business of miracles) but we would like to see some improvement.

This is just another one of those things that we have had to experience here on our trip to "Holland".  We weren't expecting it to be this way, but we have learned to adapt.  We love our son more than we ever thought possible and we will do everything we can to help him live a full and happy life.  That is what being a parent is all about.