Lucky #16?

Most of you know by now that part of John's trach journey is that he has a sleep study once a year.  In the early days, it was more like 2 or 3 times a year, but for the last few years, it has only been annually.  We usually get them done in the summer because when we get home the next day, he is in no shape to go to school.  Although it's called a SLEEP Study, not much sleep is had by either of us.

This year's study was scheduled for July 22.  This happened to be the very next Tuesday after we got home from Austin.  Although I wasn't really mentally prepared for it, I knew it needed to be done.

Two years ago, we went into the sleep study thinking this was going to be it.  This was going to be the time when they tell us his apnea is acceptable and we can start the process of decannulation (removing the trach).  For the 6 months prior to the sleep study, John had been sleeping without his ventilator and without oxygen and had done quite well.  We thought if that was the case, surely he was ready to have the trach out.  After the study, we got the results back and it wasn't exactly what we thought.  We were right in the fact that his apnea was at an acceptable level.  He had gone from having hundreds of apnea events per hour to having less than 20 per hour.  However, a new problem had arisen.  They discovered that because he is sort of a shallow breather at night, he doesn't take deep enough breaths to expel enough Carbon Dioxide when he sleeps.  This may not be significant in the short term, but over time, the increased CO2 can cause damage to major organs.  So not only was he not ready to remove the trach, we had to put him back on the ventilator while sleeping.  We felt like it was a huge setback, but obviously we want to keep his organs healthy.

Last year's study showed pretty much the same thing, so we went into this one not expecting any different.  Our process on Sleep Study days is that John and I meet Tommy for dinner between 5:00 and 5:30 before heading to the hospital.  We go up to the sleep center at 6:30 and they begin the process of getting him all wired for sound.  After we get him set up and in bed, Tommy leaves and goes home and I stay at the hospital for the night.  While we were waiting for the tech to come and get us, Tommy and I were trying to guess which number sleep study this was.  We both were thinking it was #18.  We asked the tech when she brought us back to the room and she said it was #16.  Would this be lucky #16?

Here are a couple of photos of John attached to all of the wires.  We had his hair cut short before hand to make it easier to attach and wash clean after.

We finally got settled in and got the study started.  John did not sleep well that night, even worse than he normally does.  We got up in the morning, detached him from everything and I took him home.  I gave him a good bath to wash all of the goop off of him, fed him breakfast and then he and I took a nap.  I woke up after 2 hours because I had somewhere to be but John slept for 4 hours.  He obviously did not get enough sleep during the night.

A week later, we had an appointment with his Pulmonologist and were looking forward to hearing the results.  She came in with good news and not so good news.

First, the not so good news.  This study showed that his CO2 level was in the acceptable range all night, (yay) but his apnea was worse this time than it had been the last two times.  He had something like 55 events per hour.  While it's still significantly better than it used to be, it was higher than it had been in past studies.  There was some obstructive apnea, which means that there is something in his airway that obstructs the flow of air, but there was a significant amount of central apnea, which means that his brain is just not telling him to breath.  Obstructive apnea can be fixed but central apnea cannot be fixed.  We discussed the possibility of using a CPAP mask to help him breath instead of the trach, but I know my child.  He will not keep that thing on all night and I will be up and down all night putting it back in place.  I told her that for us, that was not an option.

Now onto the better news.  She began to discuss the possibility that the trach itself could be causing the obstructive apnea.  If the trach wasn't there, all of the obstructive apnea might go away.  And she said it's possible that the obstruction of the trach could be causing some of the central.  Either way, we really won't know as long as the trach remains in place.  So we made a plan.  In 6 months we will go back to see her.  Then when it turns to spring and we are out of cold and flu season, we would go ahead and take the trach out and give it some time to see how he does.  After a certain amount of time passes, we will repeat a sleep study and see how it looks.  If he's doing fine, then we will be free of the trach.  If he continues to struggle, we will first try the CPAP mask and see how he does.  If that doesn't work for us, then we may have to reinsert the trach.  Obviously we don't want to have to do that as that will involve surgery, but we all kind of feel like we will never know until we try.  I really feel like he will mostly be fine without the trach but there are two areas of concern.  If he continues to have the apnea, he will not get a good night's sleep and that can affect his developmental progress.  It also can put more pressure on his heart, over time causing it to begin to fail.  And if he continues to not expel CO2, then it can, over time, affect his organs.

The last thing we need to do before we make this decision final is consult with the ENT.  We have an appointment with her on September 10.  We will ask her what her opinion is of having to reinsert the trach should it come to that.  There may be scar tissue built up that would make it hard to do.  Once we get the green light from her, then we will be good to go.

Please pray with us over the next 6 months that God will make his plan for John clear to us.  Pray that John continues to thrive like he is now and that his development continues to improve.  And pray for us as we make these big decisions.  We want to do what's best for John, even if that means he keeps his trach for the rest of his life.  I will keep you all posted as we get more information.

Summer Fun

Another summer has come and is now almost over.  It's been a busy one, although thankfully not as busy nor as stressful as last summer was.  We are a little more than 2 weeks away from the start of 4th grade.  4TH GRADE!!!!  I can't believe it.  I may have said this before but I'm struggling with the idea of my baby being a 4th grader.  3rd grade doesn't sound so bad.  It still sounds like lower elementary.  But 4TH GRADE?!?  That is just one step from 5th grade and 2 steps from Junior High. I'm definitely not ready for Junior High.  I taught Junior High.  I know what goes on with Junior High kids.  So I'm begging that time please slow down, just a little, so I can enjoy a little more time with my elementary baby!

Tommy and I took a much needed vacation the last week of May.  We have gone away for the weekend a total of 4 times since JT was born, only once was out of Texas and that was to Louisiana.  We haven't been on an actual extended vacation since our trip to London and Paris when I was just pregnant.  That was 10 years ago.  So we decided it was time to spend more than 2 nights away.  And it needed to be far away.  So after months of planning and arranging child care for John, 13 pages of instructions later, we left on Memorial Day for 5 days in Cancun.  John was, of course, in good hands with my mom, Tommy's brother, Jimmy, and his after school nanny, Haley.  Also, my brother and Sister-in-law were only about 3 miles away just in case.  We purposefully planned the trip while John was still in school so it would be easier on those taking care of him.

The week started off a little rough.  When we landed in Cancun and I turned my phone on, I had 4 emails from the school that they were under a Tornado warning and they were sheltering in place.  They would not be dismissing school until the warning was lifted.  So that resulted in a set of phone calls home to make sure mom knew he would be late coming home from school and then again to make sure he got home safely.  He was home almost an hour later than usual.  Then by that night, the runny nose he had when we left had turned into an infection.  That meant more phone calls home to tell mom where to take him to get the meds he needed.  After the first day and a half, we were finally able to relax and not worry about everything going on at home.  I knew he was in good hands and would be well cared for.

Since neither Tommy nor I are particularly beach people (we can't stand sand everywhere) we pretty much stayed in the pool the entire time.  We slept late, got breakfast, went to the pool, ate lunch in the pool, hung out in the pool some more before finally getting out late afternoon to shower and change for dinner.  We spent most evenings after dinner at the sports bar in the resort, where we met a nice couple from South Dakota who had just gotten engaged.  We only ventured away from the resort twice, both times in the same day.  On Wednesday, we took the shuttle over to a sister resort to spend the day at their pool.  This resort was probably 3 times as big as ours and the pool area was amazing.  We even got a little adventurous and decided to try our hand at body surfing on their "Flow Rider."  That was comical to say the least.  When we got back to our resort, we showered and changed and took a cab to a local restaurant that was recommended by a friend.  It was very nice and the food was delicious.  We spent Thursday at the pool again and then flew home on Friday.  Of course, it wouldn't be our style of vacation if I didn't come home sick.  I ended up in Urgent Care the next day with yet another sinus infection.  It was a great trip and great time of rest.  We are already planning another weekend get-away for Tommy's birthday

School ended officially on June 5th.  However, the end of the year was beginning to get rough and JT was exhausted.  I was getting calls from school everyday to come and pick him up because he was sick.  So I made an executive decision that he was done.  I checked him out on Monday morning and told them he would be sick the rest of the week.  It was a really good decision.  We both needed the rest.

The very next week in June was Vacation Bible School at Tallowood.  Although we no longer attend church there, it was a must for JT to attend their Bible School.  It was great to take him back there everyday.  It was almost as if we had never left.  He had a great time and I enjoyed seeing old friends each day when I dropped him off and picked him up.  Of course this meant that I spent the mornings that week at Starbucks.  That is a great place for people watching and I made friends with a few elderly folks that apparently go there every morning for breakfast and coffee and to read the paper.  The rest of June was fairly uneventful.  Of course we were resting up and preparing ourselves for 3 weeks of Therasuit Therapy in July.

On June 30 (Tommy and my 13th wedding anniversary), JT, Jennifer and I headed back to Austin for 3 weeks of Therasuit Therapy.  If you remember from last year, it was not the best experience and it ended with JT in the ER, followed by 3 nights in the hospital a couple of weeks later.  But after some time to recover and a little bit better planning, I was sure we could do it again and make it a much more positive experience.  The most important change I made was renting a house instead of doing a hotel stay.  The hotel was terrible last year and I figured with a little more space and privacy, the house would serve us much better.  And it did.  It still had it's quirks and issues, but over all it turned out much better than the hotel.  But of course it wouldn't be right if we didn't have a little drama.  We drove in on the morning of June 30.  His first day of therapy was that day at 2:00.  We got to the house around 11:30 and upon trying to turn into the driveway, my "Low Ridin' Swagger Wagon" got stuck.  There was a section of gravel in the driveway and I guess my wheel hit it just right.  I don't know if it was because the car was weighted down or what, but the more I tried to get out, the bigger hole I dug.  I had to call a tow truck to come and get me out.  Thankfully they did easily and we were on time for our first day of therapy.

Therapy itself went quite well.  JT worked extremely hard.  He had a different PT than last year, but the same OT.  It was nice to get the OT's perspective on how much stronger he had gotten since last summer.  Those ladies works just as hard as JT did.  He is not the easiest of kids to work with because he is pretty strong.  Lots of things turned into a wrestling match between them.  I have to hand it to them.  They were persistent and gave JT exactly what he needed.  I would have given up 10 minutes in each day, but they stuck it out the entire 3 hours.  I know they were exhausted by the end of each day.  I learned that his abs and side muscles are already extremely strong and this causes him to lean forward and sideways often.  They worked really hard with activities to strengthen the upper back and neck muscles to get him more upright.  I didn't realize this but the more he hunches forward, the greater chance he has for developing scoliosis.  We definitely don't want that.  You could tell by the end of each week, he was exhausted and needed a break.  So the weekends were always a welcome sight.

We came home the first weekend since it was July 4th.  It was nice to sleep in my bed for a few nights.  The second weekend, we decided to stay in Austin and let Tommy come visit us.  That is another change we made from last year.  While I missed sleeping in my bed on the weekends, it was definitely nice to not have to pack everything up each weekend.  We were also able to spend a lot of time with our friends Chad, Kim and Blake.  If you don't know, Blake and JT were NICU buddies.  We have kept in touch with their family ever since and always enjoy spending time with them.  Kim always takes good care of us while we are there.

JT was able to finish his therapy this year.  Last year he got sick and missed the last 3 days.  This year we made it all the way to the end.  To celebrate, I took him to Dairy Queen where I discovered his affection for hot fudge sundaes.  We packed up and headed home Saturday morning and I was so happy to be in my bed.  While the queen bed we slept in this year was far better than the sofa bed Jennifer and I shared last year, it still did not compare to my own bed.  And of course it was great to be sleeping next to my adorable, snoring husband.

I made a cute little slideshow of our time in therapy.  It gives a pretty broad idea of the things he worked on and you can see he had a smile on his face the whole time.  Hope you enjoy it.

As I mentioned earlier, we got to spend a lot of time with Kim, Chad and Blake.  Here are a few pics of us together.

Since we have been back, I have seen a lot of changes in his mobility.  He is on his feet so much more than before.  That may have some to do with having brand new wood floors.  I think he gets tired of crawling on the hard surface and I find him often times scooting on his rear.  It's kind of funny.  But this may give him more incentive to stand and walk.  I have been making him walk more from place to place in the house instead of me carrying him.  It's helped me, and it's helping him.  Just the other day, we were at my niece's birthday party and I took this video of him.  It was great!

This week John is doing Super Place Camp.  This is the same camp he does this week each year.  It's at First Baptist Church of Houston, which is kind of a drive from our house.  The good thing is that the church has everything I could possibly need, coffee, wi-fi, fitness center and a cafe.  And yes, I have actually used the fitness center this week.  They gave the parents of the campers a 2 week pass to use it.

The rest of the summer we will be in survival mode, trying to stay occupied until school starts again.