Isn't She Beautiful!

I realize she's my kid and I'm a little biased, but this one's for Mary ....

You are beautiful both inside and out and I'm so lucky to call you my daughter.

A couple more pictures from my photoshoot with Mary and Eric today

and an out-take

I'm getting a blog makeover (I'm easily bored) and I needed pictures for my photo banner which was the reason for the photoshoot today.  Stay tuned for a whole new look ...

A Good Week

Jack is having a good week ... yeah! It's nice to be able to just hang out with him after work without any (immediate) worries.

I took a picture of Eric this morning because he is wearing one of Jack's old shirts. I can't believe how grown up he is becoming!

Hope you all are having a good week.

On a Happier Note

I had a wonderful visit with my friend Anne (from Ohio) this past weekend.  We spent Sunday in Sedona - tasting wine, eating chocolate, soaking in the beautiful scenery and enjoying long talks. Thanks Anne!

Looking Back

I've been spending a lot of time looking back. Going through  eleven years of emails between me and Jack's doctors brings back many memories.  Some good, many not so much so.  I'm struggling these days and I'm not sure why.  I think Jack getting sick and being sick for so long was the trigger.  So many things going through my mind about what was, what is and what will be.  Sometimes this is just really difficult.  I was thinking about the last time I actually held Jack in my arms.  I think it was sometime in 2004.

I feel now about how I felt in that picture.  (2004 wasn't a good year.)

I'm working on getting back to my happy place. Actually, I'll settle for my content place.  I have much to be content with.  I know this.  I'll get there ... eventually.  In the meantime, thanks for checking in on us and for caring.

More conversations with a doctor coming soon ...

Jack's Ryan House Weekend

We spent our first weekend at Ryan House. It was everything I had hoped for and more.  How refreshing and UNstressful it was to be around caregivers who ask "how can we help you?" and "tell us how you want us to care for your child."  Quite different from my experiences with hospitals and nursing agencies where they like to tell me how they are going to care for my child. Everyone was wonderful with Jack and he had a great (and stable) weekend.

Ryan House is truly about the entire family.  Eric was in heaven (he's still asking me why we had to leave).  He loved the pool, he loved the staff and he loved the attention.  It was a remarkable weekend and one we hope to repeat soon.

Thank you Ryan House staff .... you are awesome!

Make an on-line slide show at www.OneTrueMedia.com

Can Never Be Reminded Too Often

I needed to be reminded of this today, so I thought I'd share it with all of you again. I don't believe we can be reminded too often how important it is to slow down and just "Be", love and appreciate life.

The Dash Movie.

Quick Update

Thank you to all who left comments.  Jack and I definitely feel the love.

Jack had a much better weekend and I think I figured out what the problem was -- the TOBI (inhaled Tobramycin).  In the past Jack has tolerated TOBI without any problems, but I've also heard of kids having a negative reaction to it.  Jack's "episodes" seemed to be about the same time each day and about an hour after he finished his TOBI treatment. Jack finished his second course of TOBI on Friday and this weekend - with no TOBI -- was much better.  Figures, doesn't it? I call his doctors' offices in desperation and tell them I have to get in and then we show up this week and Jack is just fine.  The pulmonologist was great and he agreed that it could be the TOBI and, therefore, gave us a prescription for a different antibiotic in the event the pseudomonas comes back (he got another trach culture). He also ordered a chest x-ray, but I suspect it will come back fine.  The ENT visit today was pretty much a waste of time.

So, life is working its way back to good. Jack feels better and he's much happier.  A happy Jack makes for a much happier mom.

Thanks for checking in and thanks for caring.

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Eric earning his keep! 

Yes, I know the outfit doesn't match. He picked it out!

How is Jack?

"How is Jack?"

I get asked that question often and the answer I give usually depends on who is asking. 

When asked by my friend who is an ER doctor, my response goes something like this:

"His heart rate has been 120+ for weeks, his sats are generally staying above 95 on .5L of oxgyen - but we can't get him off the Os.  He just finished a 20 day course of Augmentin, he's on his second 14 day course of inhaled TOBI, plus Xopenex and Pulmicort twice a day. He still has tons of secretions, requiring lots of suctioning, the Vest at least 3x a day and frequent use of the cough assist machine.  He's still having intermittent periods of respiratory distress and crying every day and we don't know why, although he eventually recovers from both.  We're getting bloody secretions when we suction his mouth/throat and his left ear is oozing creamy colored drainage. No fever."  

When asked by one of my trach mom friends:

"He's still sick.  I'm stressed and exhausted and I just want him to feel better.  He's been on antibiotics and TOBI, but he can't seem to turn the corner.  I'm up and down all night long dealing with water in the vent circuits, autocycling and checking on him because his heart rate is still high even when he is sleeping.  I can't leave his side for too long because he requires constant suctioning. My body aches, I'm tired and I just want to cry (actually, I've been doing a lot of crying lately ... exhaustion does that to you).  I probably should get him back into the doctor to see if we can figure out what's going on, but I feel like it will be a complete waste of time."

When asked by someone at work:

"He's still sick, but we'll get through it."

When asked by one of my sisters:

It depends on my mood when they call.  Whatever version I give, it usually involves a lot of swear words.  I tend to let my anger out when talking with my sisters. (I think there is some underlying resentment on my part, but that's a topic for my therapy session ... if I went to therapy, which I don't).  After I hang up the phone, I always wonder if they think I'm on the verge of losing it.  I spend a lot of time on the "verge", but haven't completely lost it yet.

I'm never sure how much to share with people when it comes to Jack because I feel like I'm complaining when I talk about what's going on and, let's be honest, most people don't really want all the details (and sometimes I just don't feel like giving all the details).  I try and take my cues from the person asking.  When I see their eyes start glazing over or start diverting off into the distance, or when they start to change the subject, I know they've reached their saturation point and it's time to move on - which is completely understandable.  I get it.

So, how is Jack?

Jack hasn't been this sick this long since 2006.  The antibiotics definitely kicked the sinus infection and he's somewhat improved, he's in good spirits for the majority of the day, his heart rate has come down somewhat, but he can't get off the oxygen and the intermittent periods of distress are stressful for all involved.  I think Jack's nurses are as exhausted as I am because he's keeping them hoping all.day.long.  

So, it's off to the doctors next week to see if we can get some answers (I'm not optimistic).  We see the pulmonologist on Monday and the ENT on Tuesday.  As I'm sure you've figured out by now, I don't immediately run to the doctor every time Jack is sick.  I don't have a lot of confidence in doctors and their ability to help Jack. They see a chronically ill child and many don't want to take the time to figure out the problem.  I live in fear of them just wanting to put him in the hospital because they don't know what else to do and that is something I will fight every step of the way. 

I really don't handle it well when Jack is sick.  I'm in a chronic state of exhaustion to begin with and my reserve has diminished exponentially through the years.  When Jack requires as much care as he's been requiring the last month, the stress on me is intense between caring for Jack, trying to meet my other kids' needs, doing what needs to be done around the house, and doing what is required and expected of me at work.  I try so desperately not to carry my home life into my work life, but when Jack is sick, it's so hard to keep my worlds separate.   

But, alas .... we carry on because I love this kid and I can't stand for him to be uncomfortable or in pain. I just pray that I have the endurance to carry on for the duration.

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May you all have a peaceful and joyous Easter.