All Things New

The new vent trial didn't go so well.  The issue was our DME company didn't show up with all the right pieces and parts for the new vent.  Jack did fine initially, but his heart-rate went into the 160s and pretty much stayed there while on the new vent.  There was clearly something wrong with the set-up, so the decision was made to put him back on his regular vent and try again next week when we have the correct set-up.  You know, because I have nothing else better to do with my time but spend another day at the doctor's office.  Grrrr!  (Time is a precious commodity and I really, really hate wasting it!)   The pulmonologist also changed Jack's mode of ventilation, which, in retrospect, was not a good idea because we should only change one variable at a time so if there is a problem, we only have one source to look to.  We don't know how much of Jack's stress yesterday was attributable to the vent and how much was attributable to the change in mode of ventilation.

And, I just have to share something that really gets under my skin.  After we got home, I called Jack's pulmonologist to talk to him about how Jack was doing and he says to me "you might want to check his trach to make sure he doesn't have a plug".  Really? REALLY?  I've only been doing this for thirteen years, I think I know when my child's trach is plugged and when it's not.  Sheesh!  (I really do like our pulmonologist, but this comment didn't earn him any points, that's for sure.)

In any event, next week is "Take 2" and I'm optimistic that it will be much better the next time around.

Here is a picture taken less than an hour into the vent change -- Jack was still happy at this point.  My hand is on the new Trilogy vent.

After a long and stressful day at the doctor's office, we came home to this:

Our new puppy - Hamilton

I don't think I mentioned that we had to return the dog we adopted around Christmas to the shelter because of all his health issues.  The kids have been searching for a new dog ever since.  We've never had a puppy and I never wanted a puppy - for obvious reasons.  My hands are already full, I cannot handle all the work (and mess) that goes with training a puppy.   I was overruled.  Mark and the kids saw "Hamilton" at a Petsmart adoption event last weekend and they just had to have him.  I will admit, he is really cute and looks so much like our dog Rylie.

I'm not sure why it is that change is so exhausting to me anymore.  I think I'm just flat.out.tired after thirteen years of chronic stress.  I knew going in that switching Jack's means of life support wasn't like getting a new wheelchair - this is serious stuff.  Sometimes you forget just how serious until you start messing with something that isn't broken.  From what I'm hearing from parents whose kids have switched to the Trilogy - they love it, so I know getting the new vent is the right decision.

As for the new puppy  - well, sometimes you just have to go with the flow.  I didn't really want another dog, let alone a puppy. But, everyone else in this house is happy, so be it.

I hope this post makes sense.  I'm exhausted and falling asleep as I type.  Thanks for checking in my friends.

After all these years ...

After all these years, I still find it very difficult to let people in, to open up to "in real life" strangers and let them know that my life is just a little bit different from most.  I have no problem sharing the details of this life or my innermost thoughts and feelings when I'm on this side of the computer and I don't have to actually face the people I'm sharing with.  I find it extremely uncomfortable to share the fact that I have a disabled child with people I encounter in person, let alone share the details of this life. 

However, there are times where I have to step out of hiding and let people know that I need help and explain why.  Recent case in point:  I received an email last week from the parent assistant for Eric's class asking if any kids would be interested in joining a writing club that will meet before school one day a week.  Eric would love this as he is such a creative thinker and writer.  Problem is, Mark is at work early in the morning and I can't leave the house until 8am when Jack's nurse shows up.  To participate in the writer's club, Eric would have to leave the house around 7:45am.  I can't get him there.  So, I had to suck it up and share just enough about my life to let this mom know that yes, Eric was interested, but I couldn't get him there and ask her if there anyone who would be able to pick him up in the morning and take him to school.  It's times like this, when I can't even get my kid to school a half hour early that I really resent the restrictions this life places on our family.

Of course, the mom was very understanding and sent out an email asking if anyone could help give Eric a ride in the morning.  Within a few hours, two people volunteered.  I, of all people, should know that people like to help.  Heck, I like to help - that is why I founded The Willow Tree Foundation.  It's just much easier for me to give than receive.  

The mom also told me that Eric has talked about Jack with her and some of the kids in his class.  She told me he seemed sad when he was talking about Jack.  Break.my.heart.  I guess it's a good thing I have Eric in Sibshop.

Eric also shared with me this weekend that his teacher "forced" him to talk about Jack.  Eric is like his mother, he doesn't like to be the center of attention.  I asked Eric what he shared and he said he told his teacher that Jack has muscular dystrophy, a trach, a machine that breathes for him and that he can't talk or eat.  Guess that pretty much sums it up! I asked Eric if the conversation was just between him and his teacher and he said, no - that he was asked about his brother in front of the entire class.  I don't know what the circumstances were or why the topic came up, but I give Eric a lot of credit for talking about Jack in front of his entire class. 

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I spent most of the weekend drafting a "Management of a Ventilator Dependent Child" parent perspective essay for a Cure CMD International Webinar.  Not an easy thing to do. It's difficult to take thirteen years of experience and decide what is important to share and putting so many thoughts into an organized writing.  But, I finished around 2am this morning.  

Next thing I have to work on is my introduction speech for CHOC Grand Rounds next month when we roll out the TouchStones program.  Scary and exciting at the same time.  I'm anything but a public speaker, but, then again, I never thought I'd ever find myself suctioning a trach and adjusting vent settings either.  :)

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Jack gets the new vent on Wednesday.  I'll be sure and let you know how it goes.  

Thanks for checking in.

New Vent - No Hospital Admit

First thing Monday morning, I sent an email to Jack's pulmonologist that said:

Dr. P:
I don't know if you've had a chance to talk with Apria yet regarding switching Jack over to the Trilogy, but can you remind them that the Trilogy will be the fourth vent Jack  has been on since he was 7 months old and we've never had a hospital admission when he's changed vents.  I think we are all capable of figuring it out in your office.  


I received a phone call on Thursday from Jack's pulmonologist letting me know that we will be switching Jack over to the new vent in his office.   


Score! :)

I shared this information in an email with my favorite (former) doc of Jack's. His response:

I wish I could clone you. We have so many patients here who could be transitioned and managed with chronic ventilatory needs without a PICU admission. I love that you are such a creative advocate for Jack.

It's nice to know that I've still got it in me - the whole advocating thing.  Sometimes I wonder.  I'm not sure if it's that I don't have the same need to advocate for Jack like I had in the beginning or whether it's just that I don't have the energy.  But, I'll admit, it feels good to know that when I do advocate for Jack, it's appropriate and successful.

Puts a smile on my face going into a busy weekend.

Eric has swimming and Sibshop tomorrow and Mark and I are actually going to a grown-up only dinner at a friend's house.  It's unusual for us to even get an invite, let alone find nursing coverage on a Saturday evening.

Score again!

Have a great weekend my friends!

Just Living Life

Just a quick update because I want to be better at keeping the blog updated, but also want to stick to my commitment to try and get to bed by 10pm.  I'm really trying to get more sleep because the last 13 years have really caught up with me.

As I keep up with friends on Facebook and my IRL friends, I realize how fortunate we have been.  So many people I know are bouncing in and out of the hospital with their kids for one issue or another.  There's nothing more stressful than a sick or hurting child.  For us, it's been a very long time since Jack was in the hospital and at least a couple of years since he's been sick.  I know how remarkable that is and it's not something I take for granted.  I'm not sure why we've been so "lucky" as to avoid sickness and the hospital, but I do know that being able to "just live life" is a blessing to be appreciated.

As part of our just living life ...

Eric has made great strides in his swimming.  He went from a kid who had to be strong-armed into the pool to a kid who is now mastering all four strokes and well on his way to the advanced stroke/swim team in a matter of seven months.  Eric has the perfect swimmer's body - lean and long.  He looks really good in the water.

Saturday morning after swim class 

Multi-tasking tube feeding and suctioning at the same time (picture courtesy of Eric)

I've even had the time to fit in a home improvement project.  I try to accomplish one project a year.  This year, I painted the upstairs hallway wall and created a picture wall.

As for the girls ...

Hilary has established a good client base by doing some freelance work. She has networked with people who know her genre of art and she's had a lot of requests for her drawings.  She's doing quite well profit-wise, especially given that she doesn't have any overhead and she has a free place to live. :)

Mary is busy with school and wishing she could come home more often then she's been able to.  She doesn't have a car at school and we can't be making the drive up north every weekend to bring her home.  I think she's enjoying college for the most part (but, realizing that home isn't such a bad place to be!)

The new ventilator that Jack will be switching over to is in and the next step is making the switch. Jack's pulmonologist wants to do it in his office, Apria (our medical equipment company) wants the change to be made in a hospital.  I don't understand why a hospital setting is necessary, especially given our experience with vents.  Jack is on his third different vent since 1999 and he never needed a hospital stay when we switched to a new vent in the past.  I've decided that I'm not going to get too stressed out about it - if we have to go inpatient we will.  I'm learning to go with the flow a little more because the stress of fighting the system is just not worth it.

I've also been asked to write another "perspective" for the Cure CMD website.  They want me to share my perspective in caring for a child with respiratory issues. What it's like to care for a child with a trach and vent. I think I should break it down into two parts - the technical part (the equipment and care involved) and the emotional part (in caring for a medically fragile child).  I appreciate the opportunity to share my experiences (after all, what good is experience if you can't share it?) and I enjoy writing.  I only wish I had more time to focus on my writing.

I also have a copy of the video that we put together at CHOC.  It's really humbling to listen to other moms read my words from my "Dear Future Physician" letter and know that they too can relate to the message conveyed by those words.  I will share the video as soon as I find out if it's okay to share before it's shown at CHOC.  (which is scheduled sometime this month.)

That's all I've got for now.  It's past 10pm and I have to be up bright and early to start week three of "Couch to 5K".  If I'm successful, by the end of week 8, I'll be able to run a 5K - with the hope that I can  progress from there in preparation for the Disneyland half marathon in September. I'm also contemplating participating in the St. Louis half in April - a Cure CMD team was recently put together for that race.  Not sure yet on the St. Louis race - a lot will depend on airfares. They are ridiculously high right now.

Okay, I'm really done now!  Love ya!