End of an Era

It was 10 years ago today, when we sent our 2 month old baby boy into surgery for a tracheostomy.  I remember that day so vividly.  I remember that our surgery time kept getting pushed back, which meant even longer that he had to go without anything to eat.  Try explaining that to a 2 month old, especially one that was tube fed.  He probably didn't really know what it meant to be hungry.  All he knew was that every 3 hours, his stomach would suddenly get full, with no idea how that happened.  I remember spending a lot of time that day holding him, knowing that our life was going to change so much in a matter of hours.  I remember my parents being there when we sent him off with the nurse, and how much I cried when I had to hand him over.  My mom and I both cried.  I remember seeing him in the NICU for the first time after the surgery was over, and thinking that he looked like a porcelain doll.  He had been given a sedative and a paralytic drug so that he would be completely still while the stoma, (trach hole) healed.  I remember how hard it was to sit next to his bed and not be able to hold him or even touch him.  For a week he laid in the bed, without me being able to hold him and without him being able to move at all.  It was the hardest week of my life.

It's been 3 months since John got his trach taken out.  Going into it, we had no idea what to expect.  We didn't know if he would tolerate not having it.  There was always a possibility that he would either need to use a CPAP mask at night when he slept, or worse case, have the trach put back in.  One month after the trach came out, John had a sleep study.  This would determine how he was doing without the trach and whether or not he could continue without it.  The results came back a few weeks later and were better than we imagined.  He went from having more than 200 apnea events per hour many years ago, to only having 3 apnea events per hour.  His oxygen stayed stable throughout the test and the doctor said we would repeat it in a year and see if he's still doing well.  The whole decannulation process went easier than we imagined.  Even losing the night nursing was easier than we thought.  John sleeps in a big boy bed all by himself now, and he loves having the extra space.  I get up once during the night to change his diaper and then Tommy checks him when he gets up for work in the morning.  It has all gone so smoothly.

Tomorrow, we will officially close the book on this chapter of our lives.  10 years and 1 day after handing my baby boy over for surgery, I will once again hand him over to a nurse, this time to have the hole in his neck stitched closed.  Typically, the hole closes on its own, but we were pretty sure that because he has had his for so long, it would not close on its own.  So with a minor procedure tomorrow, his ENT will stitch the hole closed, marking an end to an era.

A lot of times, when some major event in one's life takes place, they say it is bitter sweet.  For us, this is not bitter sweet.  It is just sweet.  Life without the trach has been fantastic.  Sure, I would like not having to get up at 2am every night to change a diaper, but that is a small trade off for the joy we have experienced the last few months.  All of this will culminate in one final event.  We are planning a trip as a family of 3 to Lost Pines Resort in Bastrop, TX for a weekend.  While there, John will be able to spend time in the pool and floating the lazy river, something he was unable to do as long as he had a hole in his neck.  I can't wait to watch him lounge around the river.  I know he will enjoy it and mom and dad will enjoy, just as much, watching him. 

There were honestly times when I thought this day would never come, but now that it has, what a SWEET, SWEET day it is!

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!