Adjusting to Our New Normal

Junior had his trach placed 2 weeks ago today and we have been home about 5 days so we are beginning to get adjusted to the changes.  Today I did his first trach change at home.  Yikes I was nervous and it was a little scary but I got it done and I know it will soon just be part of our weekly routine. I am not sure I will every get used to sticking something into my child's neck but it will become something that is no longer scary.
Junior is still tired but slowly recovering from the surgery and getting his energy back.  As of 9pm this evening he has gone 48 hours with NO oxygen.  Yes that is No, none, zilch, even during the night.
Here he is late this afternoon watching Texas Ranger.  Nice to see him feeling well enough to want something besides Lucy. The tube on his trach is to his mist machine he is not on oxygen.

In two weeks Junior will be turning 16, wow hard to believe.  The doctors said he would not see 6 and I am so thankful that God had other plans.  Every day is a gift and we are truly blessed.

Tomorrow Junior has a follow up with his pulmo doctor and I am curious to hear what she thinks.

Getting Organized

As I mentioned in my last post there are a lot of new things now that the trach has been placed.  Along with a huge amount of supplies Junior also now has some new equipment.
We may have to eventually get a larger cart for his machines because they no longer all fit.  His airway vest and IPV now sit on other shelves in the room and must be carried to where he is when he needs them.  
Here is a picture of the top of the cart now.  The machine in front is the portable vent which for Junior is being used as a BIPAP.  Once you have a trach you are no longer able to use a regular bipap machine.  Next to it is the humidifier which is attached to the vent by the gray tubing. Behind them is the mist machine which allows Junior's airway to stay moist while not on the vent/bipap.  

I added this small shelving unit next to Junior's bed for the basic trach care items.  The other items went on his large supply shelves after I removed the items he would no longer need.

These are Junior's regular medical shelves which we have been using for a few years now.  With the trach there were several items we could remove that he no longer needs and then his new supplies fit. 

 And one side of his closet with more supplies.  You might say we have a few medical supplies in our home.   I find it is essential that we stay organized with all the supplies we have.

When we arrived home on Friday Abby had put up signs for us.  So much fun.

Junior is struggling with some asthma but its not too bad.  Most definitely easier to manage with the trach.  Now when he is super congested I can go right in and suction to get him clear, I don't have to try to get him to cough.  He is also comfortable on the vent/bipap so it is not a battle to keep it on him when he needs a little extra support during asthma.
Sleepy kid having his treatments yesterday evening.

Of course at bedtime he was wide awake and giggling at his I Love Lucy show. 

Home Sweet Home

We arrived home late Friday and I am just finding a few minutes to stop and get a blog post up.
So many new supplies to set up as well as many items to pack up because we no longer need them. Junior is one exhausted boy but doing pretty well. He is soooooo happy to be home.

We are adjusting to our new normal as we start this new part of our journey.
I quickly discovered that the trach isn't really scary or difficult just different.  We had some fabulous nurses while we were in the hospital who made sure I learned all I needed to know to be comfortable once we got home.  Not only did they made sure I knew how to do the regular daily trach care but also how to handle emergency situations.  Junior did really well with the surgery and the recovery.  He had some pain but even that wasn't bad and didn't last long.  The first few days he had lots of coughing but that is slowly decreasing as his body adjusts to the trach.  He still has coughing episodes if he moves around much or leans forward but the doctor said that is normal and soon it will not be an issue.
Abigail and my sis visited a couple days after surgery.  Junior was still pretty sleepy but still smiled when he hear Abby talking to him.  

This is probably my favorite picture from our hospital stay.
Junior's reaction when he realized that he really did not have to have any masks on his face during treatment time. 

He loved listening to the music therapist sing and play her guitar for him.


Playing with his toys.

 Sleeping with no bipap mask on his face.  

 Wow a happy kid during the hated IPV treatment.  An amazing difference now that he no longer has to have it through the mask on his face.

Home sweet home, someone is just a little happy about that.  Abigial and my sis spent much of the weekend here helping us adjust and doing things like cooking and laundry.  So nice to have the help.

A huge thank you to those who prayed for us this past couple weeks.  Also thank you to my amazing friends and family who came to visit, brought food, washed clothes, and supported us through the hospital stay. 

Visitors

 My sis and Abby came for a visit today.  Juniors pain is better then it was and he is tired but doing well.  Lots of I Love Lucy and stories to kee him distracted.  Hospitals are never fun but we are thankful that surgery went so well and we are seeing such positive changes because of it.   Please continue to keep junior in your prayers.

Recovering

Junior's trach surgery was on Wednesday and it went smoothly.  He is now recovering and we will be here until late next week.  His oxygen levels have been much better and it is also now easier for him to clear the secretions in his lungs.  Please keep him in your prayers as he recovers and I will share more about everything once we are home.  The iPad is making blog posts very difficult.

Surgery Time

Tomorrow we will head to the hospital for Junior's trach surgery.  We have been super busy getting ready and trying to help Junior get used to the idea.
Always so scary to have your child go under anesthesia and then have them go off to surgery.  Please be praying for both of us as well as the surgeon and medical team.
We will be in the hospital for 7-14 days as we start this new trach journey.  I will not have a computer but will try to post with Junior's ipad(I haven't tried it before so we shall see).

This past week I worked on creating a book on Junior's ipad to help him adjust to the idea of getting a trach.  Aside from telling me "No" whenever the page about going to the hospital comes up he really likes it.  It tells him all about the trach but his favorite is seeing so many of his buddies who have trachs. (for those who are curious this is the Pictello app)

  

Here is a short video of the first few pages in his book. Once I am home and have some time I will get video of the rest of his book to share.

A couple nights ago Junior decided he did not need sleep.  Here he was at nearly midnight with a case of the giggles and trying to convince me he did not need to go to bed.

A few seconds of mr. giggles on video.

Who Needs Sleep???

Last night Junior decided he didn't want to go to bed and was doing his best to convince me he needed to stay up and watch tv. 

A case of the giggles.

Back to School

Hard to believe that it is already time to start school again.  With Junior's surgery coming up we won't be starting regular school session until September.  Today we did a little review and checked out some new apps I recently added to the ipad.
Junior's energy didn't last long but he did very well with what we did.
Here he is trying out the "Abitalk sentence builder, special needs edition" app. He did give me a few eye rolls because he thought it was too easy but like how I had made my own sentences with pictures of him. We used the white board so he could use eye gaze to show me which word came next.

 Then trying the "Abitalk reading comprehension science" app.  Junior really enjoyed listening to the lesson about Zebras and then answering the questions.  I read him the question and then went through the answers and he used his yes/no eye gaze to tell me which answer was correct. 

 This afternoon I worked on making Junior a story to help him adjust to the trach idea.  An app called Pictello was suggested for this and it is fabulous.  So easy to set up and add pictures, text, and voice.
Junior really likes his "trach story" and has watched it several times this evening.  Each time it gets to the page talking about going to the hospital Junior says "No" but he likes the pages about no more bipap mask or other tubes on his face.  His favorite part are the pages with pictures of his friends who have trachs. 
Here he is watching his story this evening.
 
Here is a short video of Junior watching the first few pages in his book.  So far it has about 15 pages so this is only a small fraction of it.  I can record my own voice reading the story but when I asked Junior he wanted the voice it has on it.

Earlier this week Junior was so excited when he got a package from his runner. He couldn't wait to put on the medals and didn't want to take them off.  He is part of a group that matches runners to those who cannot run themselves.  A wonderful group which we are so happy to be part of. If you are interested in being matched with a runner or being a runner you can visit their website HERE.

 He loves his Barney shirt from grandma and papa. Junior really likes the Andy Griffith show and his favorite character is Barney.  

Please keep Junior in your prayers as we get closer to the surgery date. 

Surgery Date, A Party, and No Oxygen

We have has some very strange weather for this time of year but surprisingly Junior is doing quite well.  He was able to go a few hours each of the past few days without oxygen.  The first day he would not let me take the tube off his face but it was not turned on.  Saturday I was able to sneak it off for several hours and he did great.  Yesterday he even went out to his buddies birthday party and didn't need to put it on once.
Happy Birthday to Shane!!! So hard to believe these boys are getting so big. When we met Shane he had just turned 8 and Junior was almost 6.  Junior had a great time at the party and we all had fun visiting and eating the wonderful food.

 My silly boy was excited to get to bring home a balloon.  

 A wide awake, giggly kid last night when he was supposed to be sleeping. 

Junior was so excited to make tubie buddy super heroes for his buddies just like his spider-man. 

Please keep Josiah in your prayers, he was not able to be at the party because he is in the hospital.  He had a bowel obstruction that required emergency surgery.  He is stable but needs lots of prayers.

I don't think I posted yet that we have a date for surgery.  Junior will have his trach surgery on the 13th of August which is just over a week away.  Please be praying for all of us, very stressful and scary.  I am talking to Junior about it a great deal and trying to prepare him for it.  A few days ago we gave his monkey trach surgery which Junior wasn't so sure he liked.  We then discussed how monkey no longer needed anything on his face.  No bipap mask, cough assist, IPV, or oxygen tube, now everything could be done through the trach without the masks Junior hates so much.  He did think that was cool so we then talked a little about him getting a trach like monkey.


Abby came by this weekend also, Junior hadn't seen her since she got back from my parents house so he was excited. 

She brought him gifts from grandma and papa as well as from her which he loved.  Junior loves the Andy Griffith show so was super excited with his Barney Fife t-shirt and picture.