Prayers

Early this morning I got a call, one of those calls that reminds you how quickly life can change.  My dad had a major heart attack and was at the ER.  A little while later we heard that the heart attack was not stopping and he was being transferred to a larger hospital with a Cardiac unit.  He had an emergency cath upon arrival and they were able to open the blockage and place a stent.  He is still in serious condition but the doctor also said he is stable. So very thankful for the doctors, nurses, and critical care transport team who provided the care he needed in this time of crisis. 
They don't yet know the extent of damage to his heart or if further intervention will be needed. 
Please keep him as well as the rest of our family in your prayers.  It is not easy being so far away when something like this happens but I am thankful to know my mom and brothers are there with him and he is also surrounded by his church family(my dad is a pastor in NC). 
                               
                                                              My amazing parents

Our Day

Junior was a bit on the quiet side but still had a good day.  Was up early and in his stander before his school session.  He wanted music during stander time and was thrilled when he discovered I had programed his ipad to ask Alexa to turn on the music he chose.  He chose the Beach Boys so his communication app then automatically said "Alexa play prime music Beach Boys".  The neat thing was this allowed him to feel like he could independently turn on his music choice.  We quickly discovered though that the digital voice on his proloquo2go could not always be understood by Alexa so it was kind of hit and miss when it would get his music choice correct.  At least his favorite is currently Beach Boys and it understands that one well.  A work in progress but we will keep at it and maybe one day they will update and allow us to record our own voice instead of needing to use the one on the app. 

 In his wheelchair by the window, listening to a story, and playing with his toys.  I caught him snoozing which he decided was hysterical.

 Had to call grandma and tell her about turning on his music all by himself.

 School time, started off well but then he decided he was in no mood for a quiz and kept answering NO to every question.  I finally told him No was not going to work and if he wanted to finish and do something else he was going to need to answer the questions.  Hmmm, suddenly he knows them all and is done in 2 minutes.  As the pics show he wasn't happy about it but at least he did them.

 He got this cool wall sticker for the ceiling in his room and he thinks it is very cool.  He spends more time then most in his room so we try to make sure it is full of fun things to look at.

 Some random pics from our day.  Junior's lift got its makeover for Memorial day and the 4th of July, and lots of goofiness.

All About the Trach and Feeding Tube

A little medical info on this lovely Sunday.

Junior has a couple tubes that help him get the most out of life.  One is  his GJ tube which allows him to eat and the other is his trach which helps him breathe. 

When he was younger he used a g tube and food that went into the tube went directly into his stomach.  Then he started getting sick frequently from silent reflux and aspiration(food and stomach acid coming up into his esophagus and trachea leading to pneumonia when it ended up in his lungs).   At around age nine he had a GJ tube placed.  The GJ has two ports on it with one going into the stomach and the other bypassing the stomach and going into the top of the small intestine. 

 For Junior he eats the same foods as the rest of us do they just get into his body a little differently.  He uses a feeding pump which allows the food to slowly be pushed through his tube at a set rate throughout the day.  Since it is not going into his stomach it must go in slowly and Junior is connected to his feeding pump most the day. 

 

 An example of a meal for Junior, the same meal I had that night.
 
Once in a while he even gets a meal at a restaurant blended for his tube.

Now on to his other tube the trach.  A few years ago Junior had more and more issues with his airway.  His seizures were causing damage to his airway and causing it to collapse frequently.  After a particularly bad seizure leading to a ER visit and some scary moments we knew it was time for the trach(he was 15 at the time).  

The trach is very simply put a small tube placed into the trachea to create a secure airway(we joke that he now has an extra nose). 

It means Junior no longer has to fight to keep his airway open and it has allowed him to grow and get stronger since he is no longer spending all his energy on just trying to breathe. 

  

  
A few of the things we use with Junior's trach. 

  

In pictures you often see a little blue tube coming from Junior's trach.  That is the tube for the cuff on his trach.  There is a cuff around the side of his trach which can be inflated to prevent air from leaking out while he is on his vent. 

 Junior is now what is considered ventilator dependent.  It means the he uses his ventilator to help him breathe most of the time.  Junior can breathe without the ventilator but it tires him out quickly and he starts to struggle.  He uses a ventilator set to bipap settings to support his breathing.  He does not take big enough breaths (hypopnea/under-breathing) to fully open his lungs so the vent helps makes sure he is breathing like he needs to. 

 Though it can seem scary and overwhelming it quickly becomes normal and just part of life.  We don't think twice about grabbing his vent and feeding pump as we do activities or head out the door for an appointment or outing.  It allows Junior to continue to live life to the fullest and he doesn't let it slow him down.  

Now for some pics of the smiley dude rocking that trach and feeding tube on his amazing journey.  

 

 

 

 

Update Time

So far behind and finally found a moment to post an update. 

Junior is doing well, the typical ups and downs with asthma this time of year but that is normal for him.  With things being so busy our sleep and activity schedules have been a mess so the past couple weeks I have focused on getting things back on track.  Thankfully getting back to our regular activity schedule has been a success but the sleep schedule has been much more challenging.  Junior is quite a typical teen and thinks he should be up half the night and get to sleep in until noon, he can't figure out why I don't think this is a good idea.  Lack of verbalization in no way prevents him from making his point clear and trying to convince me that things like exercise,  stander time, and school should be optional. 

Yesterday was an interesting day, he woke up coughing and dropping his sats and treatments didn't do a lot to help.  He was starting to make the barky cough sound which signals that the trach is plugging so I started grabbing the stuff to change his trach.   We had one of his yearly reassessments for  services scheduled and his case worker arrived just as an emergency trach change was taking place.
Junior likes to keep it real and make sure to share the excitement in our house.  I must say I am sure this is an assessment she will not soon forget. Boring is certainly not a term used around here.

Now for some pics from the past few weeks. 

Decorating eggs the week before Easter.


Playing basketball during stander time and doing his best to look totally uninterested and just too tired to handle it(he was really enjoying himself but didn't want to let on that stander time isn't torture).  Got to love that attitude. 

 Goofing around(oh look part of a smile while in his stander, gasp, he was slipping and showing he might be having fun).
 
A whole lot of silliness with aunty Mellisa, she was singing to him and he was laughing so hard.
 
Easter fun.  The first picture was his "put the camera down and help me look at my stuff" face. 

 Using his markers to color his bug canvas

 Cars, cars, cars, and did I mention cars.  He was soooo excited when I finally got his cars board made and he absolutely loves it.  Today we even found some road tape at walmart to add to it.  I love watching him "play" with his cars or Star Wars toys on his boards.  He is so intent and I just wish I could see what is going on in his imagination.  We have used toy bars before which he liked but wasn't that crazy about but these boards he will spend hours at a time with and demands them as soon as he gets up in the morning.   I think the toys being on the board take away the distraction of things around them so he can really see and focus on them.  Amazing how something so simple can make him so happy.  I can't express how happy it makes me to see him find a way to play independently and get so much joy out of it. 

  

A short video of him "playing"

 Playing with his Star Wars toys and then the corner pic with both boards(sometimes you just can't decide what toys to play with so you need all of them)

Tomorrow my sis and Abby will be coming over for an Easter egg hunt(Abby couldn't be here on Easter so we put it off a week).  We are also celebrating my sisters birthday a few days late which should be lots of fun.  

She had a relapse last week with increased pain and mobility issues so was restarted on steroids to try to get it back under control.  The steroids as well as med adjustments have helped and the last few days have been better for her.  The pain is more manageable and she is back to using her walker all the time in the house and only using the wheelchair when out(she was even needing it inside because of so much pain in her feet).  We appreciate all the prayers. 

 

Update

Things have been busy and I am again very behind on updating here. 
Junior is doing well and we even got some schoolwork done this past week. 

Car painting

 Chilling in his bed and enjoying looking outside.  There is a bit of a story behind this photo.  Junior had been asking for the curtain to be open but then looking out and proceeding to freak out.  This kid hates cats and was sure there was a cat out there but I didn't see one.  A few days into this happening each day I walked out onto the porch and looked up at my neighbors porch across from me(and upstairs), I noticed a cute little cut out wall hanging in the shape of a cat.  I then went into Junior's room and looked out the window to discover that at the angle Junior is looking out the window it appears that there is a cat walking on the balcony.  Oh my, all that stress over a cat shaped plaque.  I assured him that it was not real and was just a picture on the wall and could absolutely not come near him.  Then he was fine and quite happy to look out his window.
 
Relaxing with toys and a movie
 
One must be surrounded by Star Wars friends to watch a movie.

 Being silly with Abby and playing with R2-D2

  

Space sticker fun during school

 

 The finished artwork

 Using his ipad and apple box with a stylus pencil to trace his space words
 
Trying to say the words also
 

 
Game time on his ipad

More school fun on his ipad.  We went to his Nasa app and they had a link to some awesome kids videos about planet size.  Junior loved them.
 
 



Playing with his toys while watching tv.  Junior loves his Star Wars characters but can't see them if he has them in his hands.  I wrapped some fleece around a piece of foam and added some elastic and velcro strips so now he can see some of the toys while playing with some.  His face just lit up when I showed him and he spent an hour "playing".  You could just look at his face and see that in his imagination he was  playing just like other kids do.  Wish I had thought of this sooner since he has been asking for it multiple times a day and just loves "playing" with his toys now.

 

 I finally got around to making him a, much needed, new cover for his chair.  He had out grown the old one a couple years ago and we were just making it work. 
Here he is trying out his new cover, of course it had to be Star Wars. 

A quick update on my sister.  The high dose steroids were definitely no fun but they have helped.  Her strength has improved and so has her energy level.  She is still dealing with pain but at least the meds are now able to keep it manageable.  The big issue now is her mobility, her balance is still very bad and she needs a walker to get around in the house and has to use the wheelchair when out for appointments.   Thank you for the prayers and please keep them coming.