Therapy Results

It's the end of July, and another year of Therasuit Therapy is behind us.  We made it through all three weeks for the 2nd year in a row.  If you remember, the first year, he got sick the last week and we missed the last 3 days.  So, in our mind, it's a success just to complete the full 3 weeks.  I will also say that it seemed to go really fast this year.  I think leaving early the first week for Tommy and my trip to Colorado really helped.

John did really good work throughout the time he was there.  He worked harder, I think, than he's ever worked in his life, and on occasion, he let us know just how he felt about it.  Spoiler alert, he didn't like it.  As I said, each session starts off with him doing pulley weights with his arms and legs.  What I didn't mention is that each week, the weight increased.  So by the time he would finally get over the initial soreness, the weight would increase and he would be sore all over again.  Usually by Thursday each week, he was spent.  Some days he spent more energy fighting against the therapist than he did actually doing the therapy.  But the therapists were awesome.  No matter how hard John fought, they fought just a little harder.  They never gave up on him and they sweated just as much as he did.  I joked with them that they did not need to go to the gym on the days they worked with John.  The funniest day, though, was one day that he had just had enough.  It was the very end of the session and he spent the last 30 minutes refusing to do anything the PT wanted him to do.  She even tried to get him to just lay on his belly so she could massage his back, and he wanted none of it.  He started crying when he couldn't get his way.  So he crawled over to his walker, stood up in it, and walked himself over to the door.  If he could have gotten the door open, he would have walked right out of that room.  It was really pretty funny to watch.  But no matter how stubborn he was getting, anytime the therapist pulled out the walking sticks, he was ready to go.  He really liked walking with them.  In fact, we only used his walker once the entire time we were there.  He by far preferred the sticks.

We have begun our second week home since therapy ended.  I have to say that I LOVE sleeping in my own bed at night and not having to make that drive to Austin each Sunday.  But is it weird, that I kind of miss being there?  I mean, Austin is a weird town, but it's also not a bad place to hang out.  And I wish, wish, wish, he could go to therapy at that clinic on a weekly basis.  I think if he had those therapists once or twice every week, he could really make some big progress.  They are so good with him, and he needs someone who isn't going to give in when he gets stubborn.  Also, the PT mentioned a doctor that comes to the clinic and sees their patients.  This doctor is a Physical Medicine and Rehabilitation doctor that gives recommendations for the types of therapies they think will be most beneficial to a patient.  John sees a doctor like that here in Houston.  But I wouldn't mind taking him back to Austin and letting him see someone with a fresh set of eyes.  Also, he would see him in a therapy setting and get a better idea of John's movements and what might work best for him.  So that is something I'm considering doing before he goes back to school.

Since we have been home, I've already been asked by a few people whether or not we have seen any progress since his therapy.  I have learned over the past few years that John is the type of person that has to bring home everything he has learned and process it in his own way and his own time.  Usually, we don't start seeing much change for a couple of months, and then he'll start doing big things all at once.  This year seems to be a little different.  We are already seeing some changes in him.  For example, he is really wanting to be on his feet walking a lot more.  Also, before he went to therapy, he tended to scoot around the house on his bottom.  While he is perfectly capable of crawling, I think the scooting is just easier on his knees.  The therapists wanted us to emphasize crawling a little more because it helps him to keep his back straight, and that is a point of emphasis.  We haven't had to correct him much, because since he's been home, he has done more crawling than scooting.  So as hard as he fought against the therapists, he really was learning from them and he's already implementing that into his daily routine.

Yesterday, I was sitting on the couch and out of the corner of my eye, I see this little sneaky rascal, walking along the wall in the hallway.  It kind of looked like he was trying to sneak by without being seen.

Later in the day, we went to Home Depot so we could buy some PVC pipe to make his own set of walking sticks to have at home.  After Home Depot, we went to dinner, and then we wanted to take John to this new park that was just recently opened in Katy.  We have heard a lot about it and that it is a different kind of park.  When we pulled up, I immediately saw a section that John would like.  It was poles, cemented in the ground that was painted to look like grass.  But I could tell that it would be a cool place for John to walk though.  So that was the first place he went and boy did he have fun.

And we took some fun videos too where he was just walking along.

watch how he lets go at the end

 

 

We really enjoyed this park.  It felt like this particular part was made with John in mind.  If it wasn't so blasted hot all of the time, I would take him here every day so he could just walk.

Today, we got to use our own walking sticks for the first time.  As soon as he saw them, he got excited and knew exactly what to do with them.  We walked around the house a few times in the morning and again in the afternoon.  Apparently, walking is really funny.



 

 

 

 



So as you can see, therapy was good for him this year.  I'm going to try and take the at home program and really work hard on it, especially this last month before school starts.  I can't wait to see how much further he can go.  He really is my very own Super Hero!

Therasuit 2015

Well it's summer, 2015, and that can only mean one thing...Therasuit time!  We weren't sure if we were going to be able to come this year.  When I contacted the clinic earlier this year, I was told that all of their summer sessions filled up in two days after they opened the calendar.  They put us on a wait list.  After John got his trach out in April, I got back in touch with them and they told me that a spot opened up.  And it happened to be the exact session that I wanted.  Sounds to me like it was meant to be.  Then the scramble was on to try and find a place to stay while we are here.  Fortunately, we found a place at a decent rate and booked it. 

John and I arrived yesterday afternoon.  The place we rented is much smaller than I was anticipating.  But for just the two of us, we are making due.  Besides, we really don't intend to spend too much time here other than to sleep.  But the best thing about this place is that it is less than 5 minutes from the clinic.  If you have ever spent any significant time in Austin, you will know that traffic is not friendly.  Of course it's not Houston traffic, but it is weird in the sense that there is traffic at all times of the day, not just during morning and evening rush hour.  So being so close to the clinic, and not having to actually get on any highways to get there, is a pretty special thing.

One difference between this year and last is that his therapy this year is from 9am to 12.  Last year, he was having therapy from 2-5 pm.  I am kind of excited about the morning therapy slot.  Yes, it means that we can't really sleep late in the morning, but John isn't really much of a late sleeper anyway.  And generally, I don't like to get up and be in a hurry to get ready.  The afternoon session allows us to take our time in the morning and kind of veg out instead of rushing to get ready.  But being this close to the clinic, we really don't have to rush.  Once we woke up this morning, we lazed around for about an hour before we started getting ready.  We left the house at 8:40, ran through the drive thru at Starbucks, and still made it to therapy 5 minutes early.

I could tell pretty quickly once we got into therapy that mornings were going to work out well for John.  Mornings are really his best time of day.  He's well rested, he's happiest, and he's more focused.  He was in such a good mood this morning, and he was excited to be there.  He even giggled when we pulled into the parking lot, which is usually a sign that he recognizes where he is.

During the course of a week of therapy, John sees a physical therapist for 3 days and an occupational therapist 2 days.  Today we started with the OT.  We are very fortunate that we have had the same OT for each summer that we have come.  Her name is Julie and she's fantastic.  It's great to have someone who knows him.  One reason is because she has an idea of what to expect from him and how to handle him.  It saves a lot of time trying to figure out the best way he learns and she can jump right into work.  Normally, a therapist will take a good 30 minutes or better of evaluation time, asking questions and watching what he can do before starting the actual therapy.  So it saves significant time when she already knows him.  The other good part of having the same therapist, is she can compare how far he's come and how much stronger he is since she last saw him.  During the course of the year, it's sometimes hard for us to tell that he is making any significant progress.  But when I bring him back here each year, I have things to compare him to and since she hasn't seen him in a year, she can tell the difference.

Therapy starts the same way each day.  The therapist lays John down on a table in a open cage and uses pulley weights to work on strengthening his arms and legs.  That takes 1 to 1 1/2 hours to finish.  Then they put John in the suit.  The suit is a compression suit that uses bungee cords.  The bungees are used to help cue certain muscles, depending on which ones the therapist wants to use.  So if they want a particular muscle to kick in, they can tighten the bungee associated with that muscle in order to cue it.  Once in the suit, they do lots of different exercises with him. 

The focus with John is the same this year as last year, to strengthen the muscles in his upper back and neck area in order to get him sitting up straight and to keep him from hunching over so much.  His abdominal muscles are pretty strong already, and that is why he seems to sit hunched over.  So most of the exercises they will be doing will be focused on that part of his body.

Today, after getting into the suit, John was put back in the cage in something they call the spider.  The spider is a set of bungees that attach to the cage and then to a belt around his waste.  They can use up to 8 bungees, hence the name spider.  It is like giving him 8 extra legs.  Last year, when John would get in the spider, she would try and get him to stand, but he wouldn't have it.  All he could handle doing was kneeling, or his legs would be like Jell-O and he would just collapse to the ground.  But today, he got in the spider and he stood right up and he looked great.  He wasn't completely stable but he was able to stand there without the OT holding onto him, with only the support of the bungees.  We hung something from the top of the cage for him to hold onto and keep him occupied.  I was so impressed with how well he stood in there.  And instead of using all 8 bungees, there were only 6.  So he had less support than normal.  He spent probably at least 30 minutes in the spider and didn't fade. She would make it move every now and then so he would have to try and correct himself and find the center again.  He worked so hard and I was super impressed with him on the first day.  It makes me really excited to see what else he will be able to do.

He was pretty tired when he was done, and even yawned a lot after, but I couldn't get him to nap today.  I think after a few more days, he will likely come home and take a nap after lunch.  But he went to sleep at 8:00 tonight.

He will only have 3 days of therapy this week.  We will go home Wednesday after lunch.  Tommy and I are leaving Thursday for a trip to Denver to see Zac Brown Band.  We have really been looking forward to this trip.  It was planned before he got into therapy, so we had to work around it.  But John and I will be coming back here on Sunday evening, and he'll start back to therapy on Monday.  Next Friday, we will go home after therapy and then return on Sunday for the last week. 

I have to say what a difference it makes being here now that John doesn't have a trach.  We didn't need to secure nursing for each night.  That's great because I didn't have to worry what kind of nurse we would get.  We carried way less baggage with us this trip.  The car wasn't even fully loaded down this time.  And going home on the weekend will be much easier because there will be less to pack up each time.  We have the house rented over the weekends too, so there are some things we will be able to leave here.  We won't have to completely pack everything each weekend.

Here are a couple of pictures I took of him in the spider today.  And I also have included a video.  Tommy posted a video to Facebook today, but this one is a little different.  This was my favorite part of therapy today.

You can see she doesn't have any hands on him.

A Sense of Purpose

Have you ever wondered what exactly your purpose on this Earth is?  For some of us, it's pretty clear.  Doctors and Nurses seem to have a purpose to help the sick and mend the broken.  First responders such as police, firemen, paramedics, and military personnel, have a purpose to serve their communities and protect it's citizens from harm and provide help when needed.  Minsters and Missionaries have a purpose to spread God's word to the world.  But where do the rest of us fit in?

Most moms will say that their purpose is found in their children. We are here to set an example for our children.  We try on a daily basis to raise our kids to know right from wrong, We want to teach them to be kind, compassionate, smart, generous little people so that they will grow up to be kind, compassionate, smart generous big people.  We want them to have an impact on the world.  We want for our children, a better life than what we had.  Maybe our child will grow up to be President and have a profound impact on our country.  Maybe our child will grow up and discover the cure for cancer.  Maybe our child will grow up to be a fireman, who pulls a child out of a burning building, allowing that child to grow up and do amazing things.  The sky is the limit when it comes to our hopes and dreams for our children.  But what about a kid like John?  What could he possibly have to contribute to this world, to make it a better place?

We had dinner last weekend with a family, whom we love dearly.  After dinner we were sitting around talking and our friend told us that he had talked about John with an acquaintance of his.  I'm not sure if this man was a coworker or a long time friend, but with all that we had going on with John at the time, our friend felt compelled to tell this acquaintance about John.  This man, a stranger whom we have never met, decided to pray for John.  After telling us this story, our friend tells me "look at all of the people John has brought before God in prayer."  Let that sink in for a minute.  Our little John, who can't walk or talk, who can't use words to tell others about God, has in his own way brought many people, near and far, friends and strangers, to their knees in prayer.  Some of these people may not regularly pray.  They may not have a close relationship with God.  But because of the impact that John's story had on them, they decided to take the time talking with God and asking his protection and healing over John.  Who knows what that one prayer might lead to?  It could be the start of a closer relationship with God that they never had.  It could lead someone who prays sporadically at best to become a prayer warrior for others.  There is no way for us to know how that one prayer may have changed the course of someone's life.  And it all started with a little boy who can't walk or talk.

There are countless other ways John has had an impact.  Some we can see, while others we may never see.  3 years ago, I spent many weeks praying that God would allow John to continue attending school at OKE.  I truly believed that was the best place for him and the teacher he had there was the best teacher for him.  I had seen so much growth from him since he started Kindergarten and I just knew that was the place he needed to stay.  But God said no, and in 2012, John switched schools to Shafer, where he still is now.  At the time I was devastated and I knew that if God wanted him to change schools, he must have big things in store for John.  So as hard as it was, I embraced Shafer and gave it a chance.  Now, 3 years later, I can see why God wanted us at Shafer.  The school has had a profound impact on us, and it turns out, John has had an impact on it and the people there.

You all know the story of Emma and her quest to provide playground equipment for kids like John, who are in wheelchairs and who cannot properly play at recess like the other kids can.  What you may not know, is the impact John had on Emma.  For a while I thought that God brought Emma into John's life to be his friend.  We all know that friends are hard to come by for kids who have different abilities.  It turns out, God also brought John into Emma's life for the same reason.  Emma was struggling socially until the day the teacher parked John's chair next to Emma's in their second grade class.  Emma found a friend in John who didn't care who she was, or what she looked like, or how she acted, or what other people thought about her.  All John cared about was being Emma's friend.  He couldn't talk to Emma, but she still knew that he was her friend, and in turn John got a sweet friend.  Of course the rest of this story is that Shafer Elementary now has playground equipment that is wheelchair accessible and because of this friendship, Emma's parents, along with Tommy and I, are working to get wheelchair accessible playground equipment at more schools.

Not only has John brought countless adults before God in prayer, but he has also helped to spark faith in kids.  We were told by one mom that the first night John was in the hospital for his decanulation, she heard her daughter upstairs in her room talking.  Thinking she was on the phone, she went up the stairs and into her room to see who she was talking to.  What she found was her daughter on her knees, praying for John to get his trach out.  Another friend told us that the moment we let them know way back in July that John might get his trach out this spring, her daughter began praying for him every day.  And everyday while we were waiting for John to get a hospital room, both of her daughters would come home from school and ask if John got a room yet.  After being told no for probably the 3rd or 4th time, her youngest daughter said "maybe we need to pray for all of the sick kids to get better."  Talk about changing my perspective.  And on the day John was finally admitted to the hospital, her oldest daughter told her that now that John is getting his trach out, she wants him to be able to talk to her.  And although she knows that when they both get to Heaven, he will be able to talk to her, she has now begun to pray that he will be able to talk to her here on Earth.  Talk about faith of a mustard seed.  Now I'm pretty sure that the parents of these girls have quite a bit to do with the kind of faith they have, but I like to think that John gives them just a little extra reason to have faith.

He has also had an impact on me and has helped bring me out of my comfort zone.  I am not the type of person who likes to lead.  I would much rather be a follower.  I like to help by doing the things people ask of me, not by making decisions and asking other for help.  But when we got to Shafer, Special Buddies was starting and I was asked to be the parent liaison.  I was not overly excited about it, but I knew the program was a good program and I figured if I didn't do it, I didn't know if anyone else would.  So I said yes.  I met our school counselor, who is the sponsor of Special Buddies, and she is an amazing woman.  With her help, we have started and maintained an amazing program that just keeps getting better and better every year.  Thanks, John, for pushing me out of my comfort zone.

I don't know what the rest of John's life will be like, but I know that God's purpose for him is not done.  My prayer is that he continues to have an impact on those around him, whether big or small.  I hope that more people feel led to go before the Lord in prayer.  And I hope he continues to make friends and can inspire a little more faith in everyone he meets.  I do know that our little guy is going to do great things.  We may not be able to see everything he does, or every life that he touches, but I know that it will be pleasing and glorifying to God.  After all, that is the purpose for all of us in this life, to bring Glory and Honor to God in all that we do.


***Just a quick update on how John is doing.  A week and a half post decanulation, and he is sleeping like a champ.  Both nurses say that he sleeps better now than he did with the trach.  His oxygen levels are staying up and he seems to be getting good quality sleep.  And John is rocking the naked neck.  His stoma still hasn't closed on it's own, and probably won't.  We have discovered that his skin does not like any kind of adhesive that we use, so when we are home, we are leaving his neck uncovered.  I did cover it to send him to school today because he will be around so many other kids.  I am using a gauze wrap to do that so that I don't have to put any adhesive on his skin.

Our nursing ends this week.  After Wednesday night, we will have no more night nurse so we will have to figure out a new routine.  Our first step was to install a camera in his room so that we can monitor him with our phones.  Tommy did that yesterday, so now we have to figure out the best way to use this technology in order to assure he gets what he needs during the night, and we get the most sleep we can get each night.

Emotions

If you follow Tommy or me on Facebook, then you know this past week didn't quite go as planned.  If you don't follow us, here is what happened.

When John had his airway check on Wednesday the 1st, the doctor told us to plan to be admitted on Monday, the 5th.  I got a call from the nurse on Thursday that said we would get a call on Monday when a bed was ready for John and to wait for that call before coming to the hospital.  So after a fast trip to Kinder for Easter, Monday came and we waited. 

I planned to keep John home from school because I had already told his teacher, the attendance clerk and his bus driver that he would be out Monday-Wednesday.  So with John hanging out at home we waited, and waited, and waited.  Finally around 2:30 in the afternoon, the phone rang.  The nurse told us that the hospital was full and they didn't have any beds for John for that night.  She said they were hoping to have some discharges that evening and he would be put back on the list for Tuesday. 

I decided it best to send John to school on Tuesday since we wouldn't hear anything until the afternoon anyway.  It was around 3:30 on Tuesday afternoon and I still hadn't received a phone call.  So I called the number to admissions and they transferred me to room management where I was told that once again, they had no beds available.  Now on to Wednesday.

On Wednesday, Tommy decided to call around 12:30.  He was told they did not yet know if there were any beds available, but they would call by 3:30.  Around 2:30, I got a call that they yet again had no available beds.  On to Thursday.

I spoke with he nurse for John's doctor on Thursday morning.  She said as of that morning it didn't look likely there would be a bed for Thursday night.  She also said that she had spoken to his doctor and she said she did not want him admitted over the weekend because there would be doctors there who were not familiar with John.  So if there was no bed for Thursday night, we would have to wait again until Monday.  Later, we got the call that there was indeed no bed for Thursday.

So here it is, the weekend, and we are still waiting for him to even be admitted to the hospital just to start the process to see if he's ready for his trach to come out.  To say last week was an emotional week for me is an understatement.  I had trouble eating and sleeping, and trust me when I say I have never had trouble with either of those things before in my entire life.

I know I should be happy that he is healthy and not one of the sick kids in the hospital, whose parents are waiting for them to get better and go home.  I know I should treat each day as if nothing has changed.  I mean, we have done this for 9+ years after all.  What's one more week, right?

On the other hand, WE HAVE DONE THIS FOR 9+ YEARS!!!  I'm ready to be done with this chapter.  Our son has had one diagnosis after another.  Nothing in his life has been easy.  Although, I don't think that he is aware that his life is not easy, I am very aware.  And I am just so ready for him to have one of those difficult parts of his, and our life, go away.  I'm ready to close this chapter of our journey.  Our journey will by no means be over, but maybe it will be just slightly easier and better.  His and our quality of life will be slightly better and we can start to get used to a new normal.

We are just trying to make the most of our weekend together.  I'm trying not to think too much about it all and just enjoy our time as a family.  John has a soccer game today and then I may take him to a movie later.  Tomorrow will be church, nap and laundry day and then Monday, we will start the game all over again.

Please pray that a room will become available sooner rather than later.  And pray for Tommy and I to have patience and peace while we wait.  Hopefully my next post will come from the hospital.

Quick Update

I just wanted to say thank you to everyone who has been praying for us.  We have sure felt those prayers this week and I know we will continue to be blessed by them as we go into next week.  I wanted to update you on a couple of things we asked you to pray for.

First, John had his airway check on Wednesday and everything went great, just like I thought it would.  The Dr. said there was no granuloma that had formed and there was nothing new with his airway.  So the first step is completed and successful.  Now we are on to the next step.

We are expecting to get a call from the hospital on Monday letting us know they have a bed available for John.  When we get that call, likely in the afternoon, we will head up to the hospital.  So continue to pray for that first night, when he sleeps with his cap on.  The doctors will be looking for him to have no significant oxygen desaturations.  If he is able to sleep through the night with no significant desats, then we will be ready to take out the trach on Tuesday.  I'm pretty sure the parameters for the 2nd night will be much like the first.  So please continue to pray for us on Monday and Tuesday, as often as you think to.

And the other thing we asked you to pray about is his congestion.  I am happy to report that it seems to be clearing up.  Although his trach secretions still are more than usual, his nose seems to have cleared up, and that is the part I have been most concerned with.  But we still have the weekend to go and knowing that we will likely be outside most of the day tomorrow, we are still asking you to pray that we can keep his allergies at bay.  He is taking his regular allergy meds so we are just hoping they do their job and he can go into Monday with his nose still clear.  He is in a fantastic mood today and I am hoping that will continue.

There is a slight possibility that they will not have a bed available for him on Monday.  If they don't, then they will put him on the list for Tuesday.  We are really hoping that they have a bed on Monday because we are ready to get on with this and not have it drag out over the course of next week.]

May you all have a very happy and blessed Easter weekend with your families and friends.  And let us all remember what it is we are celebrating this weekend.

xoxo

End of the tunnel

We are almost there.  One week to go before John says "goodbye" to his trach.  Boy, what a long journey it has been.  I can honestly say there were times when I thought he would have it forever.  I never thought it would be possible to get rid of that thing.  But here we are.  One week to go!

Time really has gone by quickly.  When we met with the doctor in July of last year and made this plan for the spring, it seemed so far away.  And then before we knew it, it was 6 months later and we were setting a date.  And even then, we were a little more than 2 months away and it still seemed like a long ways off.  But here we are, just one week out and it's basically consuming my every thought.

This coming Wednesday, John will go to the hospital for a routine airway check.  We do these every year anyway, so it's not a big deal for us.  They will put him under anesthesia and use a scope to look at his airway.  They are checking for any kind of granuloma tissue that may have grown there over the last year.  Only one time has there every been anything there, and it was easy to remove.  Once it is determined that the airway is clear and there is nothing blocking airflow, we will be set.

Monday, April 6, which is the day after Easter, John will be admitted into Texas Children's Hospital.  The first night there, he will sleep with a cap on his trach.  This means he will have to do all of the breathing on his own.  There will be no vent there for support.  Then on Tuesday, April 7, if all goes well the night before, they will remove the trach.  This is not a surgical procedure.  They simply untie the trach tie and remove the trach from his neck.  We do this at least once a month at home to give him a new, clean trach.  They will then put a bandage over the hole.  Then he will spend one more night in the hospital so they can monitor his first night of sleep in over 9 years without a trach to help him breathe.  If everything goes according to plan, we will come home on Wednesday and begin working to settle into a new routine.

For those of you who want to know how you can help, please pray for these things:

1.  Pray that his procedure this week goes well with the anesthesia.  I have no reason to think it won't, but any time anesthesia is involved, you get a little worried.

2.  Pray the first night in the hospital is a good night and he is able to tolerate the cap on his trach as much as possible.

3.  Pray that once the trach comes out, he will be rid of it for good.  We do not want to ever have to put it back in.

4.  Pray for a smooth transition once we get back home.  It will take some time to settle into a new routine, especially during the night.

5.  Pray for Tommy and I to be at peace with whatever the outcome will be.

6.  JT has been congested for a little more than a week.  Pray the congestion goes away before next Monday.  It will be easier for him to sleep with his trach capped if his nose isn't stuffy.


Thank you to everyone who has continued to support us and pray for us through the years.  No words can explain how much the love and support we have been shown has carried us through some really tough times.  I can't wait to update in a week with wonderful news and hopefully some post trach pictures.

The Countdown is on

70 days!  Barring any setbacks, that's how many days are left before John says goodbye to his trach, hopefully for good.  Today we saw the Pulmonologist.  We discussed with her the ENT's time table for decanulation (fancy word for taking that dang thing out of his neck).  She was completely on board.  It's kind of funny because I have always sensed a sort of power struggle between our ENT and our Pulmonologist, but when it came right down to it, they agreed.  That's a nice feeling as a parent.  So the official date is April 7.  The time table looks like this:

April 1 (no joke) John will go to TCH for an outpatient procedure called a DL&B.  This is just a check of his airway.  We do this annually anyway, just to make sure that no granuloma tissue has formed in his airway that needs to be removed.  He will come home that day.

April 6 (day after Easter) John will be admitted to TCH for a minimum of 2 nights.  That night, they will put a cap on his trach and monitor him while he sleeps.  This is the same cap that he has been wearing during the day for a little while now.  It doesn't allow him to breath through his trach at all.  He has to breath completely through his mouth or nose.  We aren't allowed to let him sleep with it at home, so he only wears it during waking hours.

April 7 (DC Day) If all goes well after the first night, they will take the trach out.  The stoma (hole in his neck) will be bandaged.  He will stay in the hospital one more night so they can monitor his sleep without the trach.

April 8 (1st day post trach) If all goes well after the 2nd night, John will be discharged to come home.  And that is when the real fun begins.

This all started about 6 months ago.  On July 22, John went in for his 16th overall sleep study.  Let that number sink in for a minute.  in 9 years of life, he has had his sleep studied 16 times.  And it's not like he just goes in and goes to sleep and they watch him.  If you saw the amount of junk that they put on his head and body, you would be amazed that he's able to sleep at all.  When he was really little, it was a nightmare.  He screamed bloody murder the entire time they were attaching all of the electrodes and by the time they were done, he had himself so worked up he couldn't breathe.  Now, he doesn't cry but keeping him still long enough for them to get it all on is pretty tough.  They usually end up attaching each electrode at least twice after it's all said and done.  The other hard part is that I don't sleep well when I'm there.  So it's just a pretty miserable night all together.

photo from the July 22 sleep study

On July 29, (ironically 9 years and 1 day after his trach was inserted) we saw the pulmonologist for the results.  For some reason, I guess he just had a feeling, Tommy decided to go with me to this appointment.  He used to go to all of them, but after a while, nothing new was going on so he just let me take him myself.  But this time, he came with me.  Dr. K walked in and had already looked at the study.  The results really weren't what we were expecting.  You see, the two previous studies showed that while his apnea was significantly decreased, he was now having trouble expelling enough Carbon Dioxide at night.  He just wasn't taking deep enough breaths to blow it off.  So we continued with the ventilation at night to help him get rid of the CO2.  This sleep study, however, showed that his CO2 levels were in the normal range, but his apnea was higher than it had been.  We were just puzzled.  I thought to myself, this is never going to end.  But then Dr. K said something that surprised me.  She said she thinks it's time we see if taking the trach out will make a difference.  Apparently, he still has a significant amount of obstructive apnea and we think that is caused by the trach itself.  So if we remove the trach, the obstructive apnea should go away.  Also, obstructive apnea can also caused increased central apnea, which is when the brain just doesn't tell you to breathe.  So by eliminating the obstructive, we should be able to reduce the central.  We made a plan that we would get him through cold and flu season keeping the status quo, and then sometime in the spring we would try decanulation.  When this was decided in July, spring seemed like such a long time away.  But here it is.  February will be here in a few days and before we know it, it will be April.  In just a little over 2 months, our world will change.  And I am feeling so many emotions about it.

I'm excited because after nearly 10 years, my boy will be able to leave a more normal life.  Life with a trach is hard.  It goes beyond the realm of having a child with special needs.  It means he cannot be near water unattended, and his head can never go underwater.  That makes bath time especially tough.  It means he is more susceptible to germs because he doesn't have a mouth and nose to filter out many of the bad things in the air.  It means we can't just call the teenage girl next door to babysit.  We have to hire someone and spend hours training them on things like suctioning and how to know if the trach comes out and how to put a trach back in if it does come out.  They can't be left alone with him until they have sufficiently demonstrated they can do those things without me having to tell them.  So after nearly 10 years, we will finally have a little bit more freedom in things we haven't had before.

I'm anxious because although this will make our day time routine much easier and will improve his quality of life, it will mean that we will no longer be able to have night time nursing.  For nearly 10 years we have had a person in our house at night watching our son.  And one of those nurses has been with us since the very beginning.  Once the trach comes out, our insurance will no longer pay for us to keep the nurses.  This means I will be spending a lot of nights watching John.  We will set up some kind of system where I will sleep in the room with him, but that usually equates to not a lot of sleep for me.  I don't know how long that period of time will last.  So I'm anxious, and I'm sleepy already just thinking about it.

I'm nervous because I know this isn't a done deal.  There are a lot of unknowns.  This is not a slam dunk.  If his apnea doesn't improve, it means he will not get a good night's sleep.  His brain does what it's supposed to do by waking him up if he doesn't breathe.  But this means that his quality of sleep will suffer.  He will be more tired and that will affect his behavior, his school and his development.  And prolonged periods of time without good quality sleep can cause organs to begin to fail.  So I'm nervous that his quality of sleep will suffer, and my happy, healthy boy will no be as happy or as healthy anymore.

I'm afraid because if this doesn't work like we hope, he may have to have the trach put back in.  I've always prayed that when the time came for him to have his trach out, it would be a no brainer.  I wanted there to be no doubt that he would be okay without it.  But that's not the case.  This is kind of a trail and error situation, so there is a possibility that he doesn't tolerate it.  And I really don't want to go through the process again of having a trach inserted.  That was the worst week of our life because he had to be completely still and sedated in order to let the track heal.  I couldn't hold him or even touch him and he did not look like himself.  I don't want to go through that again.  So I'm afraid because I don't know what the future holds.

I'm blessed because although I don't know what the future holds, I do know who holds my future.  Our faith has kept us going all of these years.  Tons and tons of prayers have gone up on our behalf and we have received tremendous support from our family, friends and church family.  It is very powerful to know all of those people have been praying for us all of these years.  We have been blessed beyond our wildest dreams in this regard.  But mostly, I'm blessed because I know that it's all in God's hands.  He has had this mapped out from day one and nothing that has happened or that will happen will be a surprise to him.  We may not understand it, but he does, and knowing that he is in control means knowing that even if it's not okay, it will be okay.  He will lead us through the difficult times like he always has.  I hold on to the knowledge that one day, we will be with him in heaven, and my little boy will be made whole.  No more trach, no more wheelchair, no more diapers and no more lack of communication.  He will be walking and talking and doing all of the things he was unable to do on this earth, and that is the greatest hope of all.

You have all been so faithful to pray for us over the years, so I'm going to solicit your prayers once again.  Pray for John over the next 70 days that he will have no illnesses or set backs that will prevent this from happening.  Pray for him that once the trach comes out, his body will respond accordingly and this will be the end for good.  Pray for Tommy and I as we deal with the uncertainty.  Our whole lives and schedules will change completely, so pray that we will handle it well.  And pray that after our nursing days are over, I will find some way to stay rested.  I've been though periods of time with little sleep and it just affects me in ways you can't imagine.  So please pray for easy nights once we get him home and settled in.

Thank you all so much for staying with us on this journey.  It has been a wild ride, but we wouldn't be near as sane as we are without all of your love and support.  And I ask one more thing of you.  Share our story.  If you meet someone in a situation that is similar to ours, share our story with them.  Even feel free to have them contact me.  It can be a lonely world when you are struggling with the health of a child.  Having someone to share those struggles with, to seek advice from, or even just someone to talk to who you know understands can make all of the difference in the world. 

I look forward to the updates in the weeks and months ahead.