Baby Steps

Yesterday, we had an appointment to see John's pulmonologist.  It was his 6 month check up.  The fact that it's been six months is a good sign, because until recently, we were seeing her every 3-4 months.  We've gotten in the habit of going to these appointments with little to no expectations.  Things don't seem to change much and we just expect them to tell us to keep the status quot.  But something seemed different about this appointment.  Maybe it was God telling us that it was going to be important. 

Tommy doesn't always go with me to his doctor's appointments.  After John's first year or two, he decided that there wasn't new information being discussed and he didn't need to take time away from work to be there.  But yesterday, he really wanted to be there.  So he had to rearrange his schedule a little to make it.  Of course, the wait was forever and I was glad to have him there.  He went out and lit a fire under them after we had been there for an hour.  I wouldn't have done that, because it's just not my personality.  But he has no problems doing it.  Within 3 minutes, the nurse was in to see us.

The doctor came in and looked over his records and read through the sleep study he had last May.  While he is still having a significant amount of central apnea at night, the number of events per hour has drastically decreased.  In the beginning, he was having 100's of apnea events per hour of sleep.  In May, the report showed he was having between 5 and 6 apnea events per hour.  I'd say that's a huge improvement, but it was still somewhat of a concern.  The other part of the equation is what his oxygen saturations look like during that time.  At home, we try to keep him above 90% and that usually requires a ventilator and oxygen.  During the sleep study, without the ventilator and with some oxygen, his saturation fell as low as 81% during an event.  So that is somewhat concerning.  The reports do no indicate that he is ready to have his trach removed just yet.

Now for the encouraging news.  We made a plan.  It's always nice to have a plan going forward and not just come home and keep doing things the same way, hoping that he will just magically improve.  So we decided to take him completely off of the ventilator at night, and to start the night on room air (no oxygen).  We tried this some the last time we saw her, but we were just trying to ween him off and weren't consistent with it.  For the past several months, he has been on the ventilator every night.  She wanted us to just stop using the ventilator completely, and see how he does.  The two main concerns are what his oxygen saturations will look like when he does have apnea and whether he's getting enough rest at night to be able to continue to thrive during the day.  The brain is designed so that if you have apnea for so many seconds, it will wake you up in order to breath.  This could cause him to have a restless night and not get enough rest.  A lack of rest at night can cause problems with learning and overall development.  Obviously, we have enough trouble with that and we don't want to add to it by him not getting enough rest.  She told us to try this every night and after a month, check back with her and let her know how he does.

So last night was our first try.  He was very tired yesterday and could barely stay awake.  He fell asleep as soon as he finished his dinner.  I put him in bed just after 7:30, put his pulse ox probe on his foot and immediately the monitor said his oxygen was 98%.  That's a great start.  When he sleeps off of the ventilator, we usually have him on just oxygen.  So we put something called an HME over his trach.  This is something that helps to humidify the air that he is breathing in since it's not going through his mouth or nose.  It is not good for someone to always breath dry and cold air.  It dries out your airway.  This is attached to an adaptor that connects to the oxygen tank so that oxygen can be fed through the HME and into his airway.  So I put this on him last night, attached it to the oxygen tank, but didn't turn the oxygen on.  The plan is to keep his saturations above 92% with as little oxygen as possible.  Of course that number will dip below from time to time when he is having apnea, but as long as it comes back up, we aren't so concerned.  But if the number falls below 92% for 4-5 minutes at a time, then we would want to turn the oxygen on and see how that helps.

After I put him in bed, I stayed up until 10:00 when the nurse got there.  His oxygen had dropped 3 or 4 times in that period, but it always came right back up.  When the nurse got there, his oxygen was 96%.  I explained to her what we were doing and what she needed to watch for and when she may need to turn the oxygen on for him.  I asked her to keep track for us how many times his number dropped, what the lowest percentage was and what was the longest amount of time he spent below 92%. 

NICU at 3 months.  She knows his night time routines better than we do.  He is her baby and she takes care of him better than any nurse we've ever had.  She is pretty conservative too, so if she thought for a second that he might need oxygen, she would have turned it on.  So the fact that he stayed off all night is very encouraging to us.

We both said that we wouldn't get our hopes up.  We have done so too many times to count and we have been disappointed every time.  So while we aren't getting our hopes up, we are encouraged.  It was just the first night, so time will tell how he is really doing.  Our big focus will be whether we see a difference in him during the day.  I've already talked to his teacher at school about it and she is going to keep a close eye on him and let me know if she notices any changes.

All of this is just baby steps towards our ultimate goal of having his trach removed.  And even though the steps are small, they are still the biggest we've taken towards this goal so far.  The long term plan is to continue this at night and then in a few months we will have a sleep study.  If all goes well with the sleep study and the doctor thinks he is ready, we will be able to take that thing out of his neck for good.  It will mean so much to us if we are finally able to do that.  It will improve the quality of life for him and for us.  There are so many things he will be able to do, that he can't do now with the trach, and overall, we just won't have to worry about him so much.  One thing I can't wait for him to do is go swimming and splash the water as much as he wants.  But the first thing we will do is throw a giant  party and you are all invited.

Please pray for us as we go through this process.  Pray for John that he will continue to thrive and have good nights.  And although I know he will have bad nights on occasion, please pray that the good nights far outweigh the bad.  Pray for Tommy and I, that we will know what is best for him.  Pray that we will see the signs if this isn't working for him and we will know the best way to help him.  And pray for the doctors as they will be making the ultimate decision for us.  Pray for God's wisdom and guidance so that when the time is right to have the trach removed, it will be obvious to us all.

Thanks once again for taking this journey with us.  We couldn't make it without your love and support and you will never know how much your encouragement means to us.  I hope to post more updates (hopefully all positive) as we continue on this path.  And with that, I will leave you with a couple of photos I took of John this week.

He sure gets excited about sweet potatoes

Yesterday was a very long day.