Sunday, April 25, 2010

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 ...

Thursday, April 22, 2010

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.



Tuesday, April 20, 2010

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!


Monday, April 19, 2010

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 ...

Friday, April 16, 2010

Conversations with a Doctor

Last November I shared with you some of the emails exchanged between myself and Jack's doctors over the years.  As the years progressed, much of my cyber-discussions with Jack's doctors went beyond discussions just about Jack's condition.  Several of Jack's doctors and I have had some engaging conversations and I have been the fortunate recipient of their insight and words of wisdom on many different topics.  As I've said before, I would love to take the hundreds of emails and turn them into a book.  I find them very interesting, although I'm not sure anyone else does.  But, in the event you do find them interesting ... here are a few of my conversations with a doctor.


________________________________

Ann,

I’m glad that Jack is behaving.  And talking to the family that A connected you with – wow – that is intense. It is one thing to reach the point where – had you known then what you know now – you might have reached a different decision, and quite another to actually regret the decision or resent yourself or other for it. As a physician, I would still err on the side of recommending supportive care when the diagnosis is unknown (of course that is a bit of a generalization).  Had we known then what we know now about Jack’s diagnosis, the recommendations might have also been different.

It never really balances out, but I have seen what appear to be hopeless situations – child comatose with some unknown neurologic disease stuck on a ventilator for weeks – where we actually did counsel limiting support. Parents have other insights, support the child and now he/she is awake, playing, talking, weaning off the vent. As I said, when the diagnosis is uncertain, so obviously is the prognosis.

Nonetheless, I empathize with how you must have felt (Note “empathize” not “understand” as in fully appreciate … not “being there” myself – I always am skeptical when I hear doctors and nurses telling families they “understand” what they are going through … not right in my mind.)



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 –  just to clarify, I resent no one for how things turned out for us. I get that we were all dealing with the unknown. It is what it is, but conversations like I had last March do bring up a lot of emotions.  I will never understand why we got picked to be on this side of the journey – but, for the most part, I’m through being pissed off all the time because of it. I appreciate that you get it.

~~~~~~

Ann,

Understood.

There’s a scene in the movie “Defiance”.  It’s about these brothers who keep a group of Jews alive in the forest of Belarus and away from the Nazi’s during WWII.  There is one scene at a funeral in the forest, where the man leading the prayer says, in effect, we’re tired of being the “chosen” people; “choose someone else”.

I think the way you phrase it: “why we got picked” is very well spoken.

Take care,


____________________


A friend of mine has a child currently in the PICU at SLCH – she is a lung transplant kid.  According to my friend, the docs are really pushing to get her child out of the PICU – to the point (according to the mom) of wanting to rush her off the vent to get her out.

As you know, I too felt rushed out of the PICU this summer after Jack’s spinal fusion surgery.

My question for you – is this trend to push kids out of the PICU driven by the doctors or the insurance companies.  I know that most docs will pick the best interest of the child over the insurance companies.  I was just wondering what kind of pressure you get – if any – from insurance companies.  I wonder what would happen today if Jack was in the PICU and I refused to consent to a trach for as many months as I did (after the subject was brought up). I remember Dr. F telling me that if Jack was an adult in the ICU he would have a trach by now – he said tops, one week in the ICU and adults are trached and moved out.  I’m not sure how someone can be forced to consent to a trach.

~~~~~~

Ann

Maybe twice in my career have I ever had an insurance company call me and ask for justification for the care I was providing to a patient in the ICU. Usually this is because the child is at an out-of-network facility and they want to know when the patient is stable enough for transfer to the approved facility.

In other words, insurance and money in general has nothing to do with the decision to keep a patient in the ICU. The pressure physicians feel to “move patients along” is to make room for new patients and the principle, in general, that we try to use limited resources (like ICU beds) wisely. Finally, there is the general feeling that ICU’s are dangerous places and the sooner the patent can leave, the better! That is honestly all there is to it.

Of course, there are always those difficult to deal with parents that we want to get rid of … (I am SO kidding … )

With regard to forcing people into decision like the trach – of course you cannot be forced to agreeing to a procedure or any therapy for that matter.  But there are often “clearly in the best interests of the patient” (or so the docs firmly believe) interventions that docs can be rather aggressive in pushing for.  In that case, no doubt some families feel “forced” or “rushed”.  Sometimes families and physicians come to realizations about the timing of things at, well, different times.  Wise physicians should recognize this and try hard not to come across too forceful.  Not all physicians are wise.



___________________


Just wanted to give you a short Jack update. Jack continues to do well.  Amazingly, for being flat on his back for 2 months, he’s not having any respiratory problems and is satting 100% consistently.  He probably could stand to have his vent setting lowered, but I doubt it really matters at this point whether he is on a rate of 10 or 14. Although, even all these years, I find it difficult to get out of the “need to wean” mode.  He really needs a sleep study to determine if he is being properly ventilated.  I saw that CH has a home ventilator program – we may be looking into that. Then again, does it really matter if he is over-ventilated?

~~~~~~

Ann,

No it does not matter if he’s a little overventilated.  CH has a big home ventilator program.  Let me know and I will make the appropriate contacts in advance.



~~~~~~

I only wish I had waited and had you find us a spine surgeon there too.  I’ll be kicking myself to the grave on that one. 

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Ann,

Don’t even let me hear you talk that way. You have always made the right decisions for Jack.  Using the “retrospectoscope” (an official medical term) is a useless venture. Last I checked, none of us had the ability to see into the future.  Had you waited and brought Jack here, something else might have happened, either in waiting or by coming here.

After all these years, you should have learned that your judgment is not in question.



____________________


As I think you are aware, we are still here. I’m flying home today for a few days and Mark is taking over for awhile.  It is very difficult for me to leave Jack, but I need a break and I think the people here need a break from me. I’m so angry right now that I can’t be nice .  Btw, I’ve been keeping a chronicle of the last three weeks on a blog I set up for Jack.  If you have some time, take a look – but, I’ll warn you, I’m very honest about my feeling towards the medical people managing Jack right now.

~~~~~~
Ann

You are quite an honest person and I think it is a very healthy thing to realize that at this moment you can not change what is happening to Jack.  You can however make a tremendous difference to your other children and your work by using all of the other gifts you have been given.  You can use this very unpleasant time to teach your children that doctors – the best and the worst – do not ultimately control very much … oddly, even the worst doctor might be doing her best.  My only small bit of advice … do something really fun with your other children. 

I will definitely look in on your little fella. It is a good idea to get away, you will be much better able to help Jack. Have a safe trip and I’ll see you when you return.

-A

___________________

Copyright Ann F. Schrooten 2010 All rights reserved.


Sunday, April 11, 2010

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!


Thursday, April 08, 2010

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.

Tuesday, April 06, 2010

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!

Friday, April 02, 2010

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.