Sunday Morning Golf

I was reminded by my mother-in-law the other day that she reads my blog (she is 90 years old and uses a computer -- impressive, eh?) She told me she enjoys seeing the pictures I post.  These are for her ... the boys out golfing on a Sunday morning.  These are from last Sunday and yes, Eric's clubs are too small (time for a new set)!

Happy Sunday!  

More Conversations

More of my conversations with a doctor.  I'm so blessed to have such an exceptional group of doctors on our team, who have stepped beyond the walls of the hospital to offer care, compassion and support.  I love these docs and I truly owe my sanity to them. 

____________________

5/24/01

Hi -

I thought I’d share the results of Jack’s tests with you. The fluoroscopy shows that his right diaphragm is still not working – i.e.: the phrenic nerve hasn’t regenerated enough to overcome the plication. The left diaphragm is working, but not as good as it could. Dr. S is supposed to talk with the people she knows in Chicago about the phrenic nerve pacer, but I haven’t heard back from her yet.

I had requested the chest CT to see if there was any compression or compromise as a result of the right aortic arch or any changes following the division of the ring. Everything looks fine in that regard.  Dr. S said the radiologist noted the presence of bronchiectasis, apparently a new finding. 

Jack’s neurological antibody analysis done by Dr. P all came back normal. This is one instance I was hoping they’d find something.

All the tests I can come up with have been done and we’re no closer to any answers or solutions than we were before. 

I’ve got Jack set up to try the Pulmonetics vent.  I had to get Dr. S to place an order for the vent.  I get the impression that she is not happy about it. Her favorite vent is the Legacy.  I don’t think she is one for change, but hey - I’ve had to deal with a considerable amount of change in my life, she can deal with some too.  I’ll let you know how it goes.

___________

5/24/01

Ann,

Thanks for keeping me posted about Jack’s tests. I’m not sure what to make of the continued lack of phrenic nerve function – did Dr. S talk with you about this? I’m no expert, but if the phrenic nerve is not functioning, how will pacing the nerve help? I thought the nerve had to be intact for this to work. 

It’s good the chest CT showed no compression.  Bronchiectasis as an isolated finding – depending on its severity, is hard to interpret.

I know it is incredibly frustrating not to have ultimate answers.  Even in 2001, patients have problems that have either never been seen before or no one has been able to put enough of them together to label them and get a new diagnosis understood.  If it helps at all, if there was a treatable problem, it would have been identified a long time ago. You have been giving him the best medicine there is for whatever his “true” problem is: love and supportive care.  He will grow to reach his fullest potential because of your incredible devotion to him.  There is no medicine or operation that can come close to what you do every day for him.  I’m not just trying to be nice; this is just the simple truth.

Keep me posted.

__________

5/25/01

Regarding the phrenic nerve pacer – I don’t know if it will help.  Dr. S. did say that if his nerve was completely severed than it wouldn’t help, but it’s only partially non-functioning.  I know that Jack’s phrenic nerve paralysis is not congenital,  it is a post vascular ring division issue and Dr. C did and EMG and determined that the nerve was not totally non-functioning.  Based on what I’ve read, when there is paralysis to the phrenic nerve following chest surgery that most the time the phrenic nerve will regenerate over time – in one study all the kids got their function of the diaphragm back anywhere from 1-7 years. 

I don’t know if the phrenic nerve pacer will help, but I didn’t think it would hurt to ask. I know he doesn’t fit the criteria for the typical user, I’m just looking for ANYTHING that might get him of this #$*&@ vent! The ultimate solution is going to be time and I just need to accept that.

Have a good weekend.

Ann

__________

5/25/01

Ann,

I see the point about the phrenic nerve issue – I ran into Dr. S today and she said the same thing – it couldn’t hurt to investigate it.

It’s easy for me to say this because it’s not my own kid on the machine. And of course, you’ll take this in the partial light manner in which I offer it. You need to make peace with the ventilator.  The ventilator can be your friend.  

Ok, so it’s a silly idea. Here’s another one. Write a book about all of this. Get your feelings on paper and organize and explore them.  You have learned so much you don’t even realize.  Share what you’ve learned with others.  The worst that could happen is that it may not get published, but then you could publish it yourself on the Internet.

Just a thought. Take care.

__________

5/26/01

Okay, this will be the last time I will bother you, but I have to respond.  I really appreciate your words of encouragement.  It really helps.  But, I won’t even go there when it comes to taking care of a child on a vent.  There are issues beyond just taking care of Jack and they are usually the more difficult ones, e.g. insurance and equipment issues.  I just found out Friday that I am going to have a battle with my insurance company to get the Pulmonetics vent. They think it’s merely an issue of convenience, so they aren’t going to approve it.  Also, how can it be good for someone to be mechanically ventilated? Granted, it beats the alternative, but how is his life expectancy affected from having air forced into his lungs by a machine?

I’d love to write a book but, before I can – you are right, I have to come to peace with the ventilator and I’m not there yet.  If I do write a book, I would direct it to the medical profession to give them some insight on what it’s like after they send the kid home. You’ve taken the time to listen and find out, most doctors aren’t that caring.

Ann

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5/27/01

Ann,

You’re not bothering me. I’m learning more from you than you are from me in this dialogue. I’m sure that I have no clue about the myriad of “peripheral” issues involved with caring for Jack, but that’s why I admire and respect what you’ve been able to do all the more.

There is no doubt it is better to breathe naturally than have a ventilator do it for you or help you. But, in general, as long as the oxygen concentration is not high and the volumes and pressures aren’t either, there is not felt to be any real damage to the lungs.  Certainly babies who need chronic ventilation because of severe lung disease are able to heal their lungs and grow new lung while on ventilators.  Patients on ventilator may have a shorter life expectancy because of the underlying condition that makes them need the ventilator – it’s not necessarily that the ventilator itself is the danger.  The one hole in my reasoning, of course, is that the artificial airway bypasses the normal protective mechanisms of the upper airway, so patients with tracheostomies may be more prone to respiratory infections.

If you ever write a book, I bet it would be valuable to both physicians and families.  And, I’ll be the first in line to get my copy autographed by you.

Hope you have a chance to relax this weekend. 

____________________

6/2/2003

Jack is scheduled for his first outpatient procedure in this medically challenged City next Friday.  He’s having another bronch by a new ENT that I’m not sure I like yet.  My biggest worry is with the anesthesiologist. Jack’s last bronch was done bedside in the PICU by the pulmonologist and he never even increased Jack’s rate after he was sedated. He just gave him 8L of oxygen instead – I guess to make sure his numbers looked good. Am I safe in assuming the anesthesiologist that will be sedating Jack this time will know to increase his rate when he is sedated? The problem is that you taught me the right way to do things and now I know too much.  Wish us luck.

__________

6/3/2003

Ann,

I’m sorry that you have gained such trepidation of the physicians there – not that it is an undeserved feeling, but I’m just sorry about it.  After all this time you have learned a lot medically, but you’ve also learned a lot about diplomacy with doctors.  Gently, without fear or threat to your voice, speak with the anesthesiologist and tell him/her upfront about your concerns.  If he/she is a decent person, they will at least listen politely and then take your thoughts into account as he/she cares for Jack. Jack has survived some sub-star docs here – he’ll get through the procedure with your help. Now, you just need someone to help you!

I still have lots of Jack’s pictures up in my office and I occasionally use the picture with him and his baby brother chewing on his vent tubing in lectures I give – of course I don’t mention him by name, but I note how rewarding, difficult and frustrating patients can be!

If there’s anything I can do, let me know.  I’m going to Boston for a long meeting on Thursday but will be in touch by email.

__________ 

6/3/2003

Thanks. I always try to maintain a respectful and non-threatening approach with doctors, but you’d be amazed how his or her attitude changes once I start asking things that are outside of the box of what they expect me to know or discuss.  I would think that if you specialize in kids, you should know that you also have to specialize in their parents.  That, I believe is the biggest difference in my experiences here in Phoenix compared to STL.  I have no doubt that these doctors are competent in the science of medicine, they just have a long way to go with respect to the art of medicine.  I also have high expectations when it comes to doctors based on the (mostly) outstanding experiences I’ve had in STL. 

I’m glad you are able to use Jack as one of your positive experiences in your career.  I think he definitely qualifies as “rewarding, difficult and frustrating” – that about sums it up!

Good talking with you …. Enjoy Boston.

__________ 

6/3/2003 

I just wanted to add that my medical knowledge is not limited solely to my experience with Jack.  It was always my intention to go to medical school and I spent most of my weekends during college volunteering in the emergency room of a Level 1 trauma center here in Phoenix. So, long before Jack became a resident of the PICU, I already knew the jargon and was not unfamiliar with medical technology or medical professionals.  Unfortunately, I ended up on the wrong side of the white jacket (sounds like a book title, huh?)  I used to think doctors were just short of God before I became the parent of a child who can’t be “fixed” by any doctor, no matter how hard I try.  So, I admit that I have an underlying disappointment and frustration with doctors to begin with and, therefore, it doesn’t take much to push me to the side of disliking a doctor rather than liking a doctor.  But, I also know that I can’t afford to alienate every specialist in this City because they really are in limited supply.  Therefore, I can assure you that I take a non-arrogant and non-threatening approach with docs.  Then, I come home and take a Xanax.  

 __________ 

6/3/2003 

Ann,

You needn’t worry – I know (intellectually, not emotionally) what you have been through with Jack, and you’d have to be a truly, gullible unthinking person not to have a “healthy” (pardon the pun) skepticism of doctors and the medical world.  I always thought you handled yourself splendidly with everyone here and it sounds like you are being your typical diplomatic self there too.  I may be in the minority, but I don’t like people who just roll over and accept everything doctors tell them – it is people who raise questions and voice concerns that keep us thinking and on our toes.  And if we truly believe we need to continue to challenge ourselves to improve- and we surely do – then that kind of interplay is both good and necessary.  You have always been Jack’s best advocate and you always will be. So, don’t take too much Xanax! 

Good luck and keep me posted.

____________________ 

8/9/2006 

When you get a minute, can you read the latest update on Jack’s  blog. I need your thoughts.  I’ve about had it with the orthopedic team. My experience with surgeons has always been with the CT surgeons and, from a parent’s perspective, they have always been wonderful to deal with. I am beyond pissed at ortho thinking they can make decisions without my ok.  In addition to the broviac, there is also the possibility that they will have to drain some fluid off of Jack’s left lung and I want CT to do that – not the general surgeons.  Dr. H is available and willing to handle this. Am I being unreasonable to insist that CT do it? I’m told that because ortho called the general surgeons – it is now political if they are called off.  I still think it is my decision, not orthopedic’s.

__________

8/9/2006

Ann,

You are spot on – as usual – that this is political.  The usual way we do things is that if the CT surgeons already have a relationship with the patient and family, they should be the ones to do the broviac.  Assuming they are willing and it certainly sounds like Dr. H is so inclined.

The broviac will accomplish a lot – in the short term. The biggest immediate benefit is the ability to get blood without sticking Jack.  Whether he needs longer term antibiotics or not should be something decided upon between Ortho and ID – since they were consulted. 

I can’t speak for orthopedics, but I can understand their anxiety. They just put a lot of time and effort – and hardware – which could get infected if he does have some circulating bacteria that is not adequately treated – into Jack.  The somewhat intellectual approach of ID – stop antibiotics and see if anything grow – is potentially a risky venture as far as they are concerned.

Sounds to me like Orthopedics and ID need to have a serious chat, weighing risks and benefits of the various approaches.  Maybe they’ve done that and this is the decision.  Meanwhile, you have every right to suggest that yet another surgical service is not needed, since Dr. H knows Jack and is willing to perform the broviac, if indicated.

I’m sorry you’re all having such issues. Though it may not be of much consolation, given his history and status, things could be much worse.  You knew this would be a big deal and speed bumps (OK, six foot high walls) were to be expected. Please try not to let what you want and/or wish to happen interfere with the decisions needed to see him through the rest of this. You’ve come too far already.

____________________

6/2/2005

. . . 

The other day, one of the young fellows I am training asked me what it was like to have children and take care of critically ill children day in and day out. I reflected a moment and then told her that we eat ice cream at my house for breakfast.  Life is too short and too precious, our world's can be turned upside down with a moments notice and what I see happen to other people's beautiful children could just as easily happen to mine. As a result, if my girls want to eat ice cream for breakfast, we do! 

Both you and Jack made me a better physician and a better person.

__________

Copyright Ann F. Schrooten 2010 All rights reserved. 

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.

~~~~~~~~~~~~~~~~~~~~~~

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.

~~~~~~~~~~~~~~~~~~~~

May you all have a peaceful and joyous Easter.  

Eric's Dream

Eric never ceases to make me laugh.  Yesterday he brought home this really cool book that is a compilation of essays written by all the kids in Eric's class about their dreams.  Eric's dream is "to go into space and possibly discover a new planet."  What made me laugh was the end of his essay where he says that the effect his dream would have on him is "for once in my life I would be doing something important and decent." Seriously, shouldn't an eight year old just be playing with legos and having fun, not worrying about doing something "important and decent" with his life?  He makes me laugh ... and he kind of scares me too!

Book cover

Open House Pictures

For those of you who aren't on Facebook with me, here are pictures from the Ryan House open house. What an amazing place! 

Great Room

Kitchen/dining

Jack will be able to use the pool because they will have a special harness to hold him in the chair  - he will love it!

One of the themed rooms for the kids with a place for the parent to sleep if they want

wheelchair accessible playground

What I didn't get pictures of (because it felt weird walking around taking pictures) was the sensory room, media room, art room, music room, meditation room and family suites.  I will definitely feel comfortable leaving Jack at this place.  Parents can stay the entire time with their child if they want or they can come and go or they can leave their child and not stay at all - whatever they are comfortable with.  Eric asked if we could check in on Monday! 

Ryan House

This Saturday we will be attending an open house for Ryan House.  I first heard about Ryan House about six years ago - although I can't remember how I heard about it.  I contacted Ryan House because of the similar missions the Ryan House and The Willow Tree Foundation shared  ----  Respite.  The Willow Tree Foundation provides respite opportunities for parents by financing respite activities.  Ryan House provides respite opportunities by providing a place for children to stay so that parents can have some respite.  When I first heard about Ryan House, it didn't occur to me that it might be a place for Jack, me and our family.

I talked with Ryan's dad (the founder, along with his wife, of Ryan House) about how the idea for the Ryan House came about.  His son, Ryan, has spinal muscular atrophy and they were living in England when Ryan was born.  Apparently (and my friend Julie can let me know for sure), respite facilities are quite common in England.  When they moved to Arizona, they brought their vision and commitment to establish the same type of facility they saw in England with them.

I believe Ryan House originally hoped to open sometime in 2006.  However, 2006 came and went, as did 2007.  Ryan House's ability to become a reality was one hundred precent dependent on contributions and donations and the process was a slow one.  In an effort to get the "show on the road", Ryan House partnered with Hospice of the Valley.  The mission of Ryan House was expanded to provide not only a place for respite but also a place for end of life care.  In 2009 construction of the Ryan House finally commenced and the Ryan House will officially open its doors for respite on Monday, March 29, 2010.

2009 was also the year it occurred to me that Ryan House might be a place that I could take advantage of.  Six years after I first learned of Ryan House .... six exhausting years of caring for a medically fragile child ... I finally conceded that I might actually, maybe, possibly could leave Jack in a "facility" and in the care of strangers for several days.  But, the guilt ... oh, the guilt (for just thinking it, let alone actually doing it.)

Ironically, my brother-in-law was recently hired by Hospice as the Facilities Director and he's been spending a lot of time at Ryan House the last month as it was getting ready to open.  He tells me Ryan House is "amazing".  There is no question that it's a state of the art, class act all the way around. I'm excited and scared at the same time.  No, I'm not ready to drop Jack off and head to the Bahamas for a week.  But, I am willing to go to the open house on Saturday and then ease into the possibility of leaving Jack there for a weekend here and there.  I was told that they want the parents to stay the first time the child stays at Ryan House so that they are available if needed.  Ryan House has sleeping rooms for  those parents who want some rest, but who don't want to leave their child.  They can sleep knowing that their child is down the hall if they want to check on them.

I feel very fortunate to have a place like Ryan House here in Arizona (especially considering how behind the times we are when in comes to pediatric healthcare).  It's a unique opportunity and I'm looking forward to giving it a try.  

Ryan House did a story on Jack in their most recent newsletter.  Most of you all know Jack's "story", but if you want to check it out, here is a link to the Newsletter:

Newsletter

All qualifying families receive 28 days per year, free of charge, to spend at the Ryan House.

Happy Birthday Mary

Happy 17th Birthday to my sweet Mary!

 In California Adventure/Disneyland

Mary commented to me a couple of months ago that I never blog about her -- only Jack, Eric and Hilary (she's my only kid who regularly reads my blog). There is so much I can share about Mary and what a remarkable person she is.  One of these days, I will write an "All About Mary" post.  Stay tuned ...

~~~~~~~~~~~~~~

I wish I could say my week of R&R has been just that, however, that's not been the case because Jack is still sick and has been giving Mark a run for his money.  I'm furious with my nursing agency right now (so much so that it's 2am and I can't sleep because I'm still fuming).  Apparently, they think because I'm out of town, they have permission to call Jack's doctor regarding him.  (As far as I know, no one actually made the call, they just discussed it).  I made it very clear that I make the call as to when Jack's doctors are called and then I make the call.  I've got a lot to say on this subject too, but it's probably not a good idea to write it all out when I'm angry.  So .... stay tuned for that too! :)

Oh happy day! 

Celebrating March Birthdays

All the cousins celebrating March (and one February) birthdays

In Lego heaven

 A little basketball at the park

watching from the sidelines

Mary and I are headed to California tomorrow.  I'm so looking forward to (and desperately need) a few nights of uninterrupted SLEEP! Yet, I truly hate leaving Jack.  I worry so much about him when I'm gone (I worry about him when I'm home too, but not as much).  He's feeling better and I'm sure everything will be fine ... but, I'm still going to worry.

May you all have a restful week . . . thanks for checking in.

Happy Birthday Eric!

Happy 8th Birthday Eric.  

Time flies so very fast.  It seems like only yesterday ...

you were two.

and now you are in second grade!

You are my most challenging child, but also the one who always has us laughing.  You are the perfect exclamation point at the end of our family!

~~~~~~~~~~~~~~~~

Eric's "Second Grade Reflections" from his student led conference yesterday

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Jack is on the mend. He's off the oxygen and is much happier this week.  Yeah!

Friday Fotos

Friday night at the Ranch

Checking Facebook and making plans for the night

Engrossed in his DS 

Just taking it all in

Just wanting to feel better

Still requiring Os

20-day course of antibiotics, $5000 boxes 

of TOBI aerosols and Probiotics to counter 

the 20 days of antibiotics

(the bottle on the right is my Rx)

~~~~~~~~~~~~~~~~~~~~

Hilary spent her Spring Break visiting her cousin Bridget in New Jersey.  She took the train from Rochester, NY to Penn Station in NYC.  As usual, I was nervous that Hilary would have trouble navigating her way and, as usual, she did just fine and had a great time with her cousin. She heads back to Rochester tomorrow.  My niece sent me these pictures today of their time in NYC.

They saw Mary Poppins on Broadway. 

I heard it was awesome!

Since my niece wasn't in any of the pictures -- 

here's a picture of Bridget and her boyfriend Joe

taken when they were in Phoenix a few weeks ago.

(Thank you Bridget for taking Hilary in this last week!)

Have a great weekend!!

It's a Matter of Principle

Every so often on this journey as the parent of a child with too many other people involved in his (and our) life, I reach my breaking point with all of it and I say .... enough.  If you recall, a couple years ago I'd reached my "enough" point with the school district, the nursing agency and the our DME company.  Today it was the nursing agency and Jack's speech therapy company.  (This is partly a repeat for those of you who read the Tracheostomy.com message board).

Nursing Agency

Every month a Plan of Treatment gets sent to me from Jack's nursing agency. I typically just stick the paper in his chart without looking at it. However, this weekend I took the time to read through it. In addition to finding a bunch of inaccuracies (including Jack's age), I read that the agency designated Jack's "Disaster Classification" as a "2" which means: "patients requiring moderate level of skilled care that should be provided the day scheduled if possible, but the patient would not be at risk or be in discomfort."

Since when does a child on life support with an artificial airway require a "moderate level of skilled care"?  (whatever that is).  Apparently, if a disaster strikes our area, Jack will be fine for a day or two without having his vent on or his airway suctioned - without risk or discomfort.

Today I called the nursing agency for an explanation.  The explanation I got from the nurse manager was that "no pediatric patients are Level 1 because they have a responsible person who can care for them". I wasn't buying it. She put me through to someone higher up on the food chain and I pretty much got the same explanation. I told her I still have two problems with this: (1) the wording of Disaster Classification 2 does not state that - it states that my child only requires a moderate level of care and would not be at risk or discomfort - which is completely incorrect; and (2) what if I die in this disaster? I'm not there to provide the care - then what?

I was told that the classification was for internal purposes only and that they know that my child is on a vent and that, in a disaster situation, they would immediately make contact with us and make sure we are available to care for Jack - if not, they would send out a nurse.

Fine.

Except for the part that states my child requires a moderate level of skilled care and would not be at risk or be in discomfort. I asked her to remove the language from his Plan of Treatment.  At the end of the day, it's not that important if it's for internal purposes only, but it still bothers me because, as written, the classification is wrong as it pertains to Jack.  I want it out as a matter principle.

Speech Therapist

The only therapy Jack has been receiving for the last few years is speech therapy through our Department of Developmental Disabilities.  Once Jack got his eye-gaze system, we needed - and found - someone who could work with him on it.  We've had this person for the last year and a half. I get so many EOBs every month and after all these years, I usually just throw them in a pile and eventually read through them ... or not.  Usually in the beginning of the year, I do read them to make sure the deductibles are correctly applied  A couple of the EOBs were from the agency that provides Jack's speech therapy.  I guess I never paid attention in the past, because I was shocked to see that they are billing insurance $400 per hour. Unbelievable.  I called their office and asked their billing person why they think they are entitled to bill $400 per hour for speech therapy services.  Rather than answer my question, the woman tells me "we never get paid that much anyway".  Oh, so that makes it okay to bill an unconscionable amount of money?  

I also noticed that they billed for two separate days each week, when they only come once a week. When I asked her about this, she told me that because they come 2 hours a day (which, incidentally, they do not) and they can only bill one hour a day, they just bill the other hour on a separate day ... a day they did not provide services.  What's amazing to me is that the person I spoke with sees no problem with the exorbitant hourly rate or the fraudulent billing practice.  

I'm done with them. I cancelled Jack's speech therapy today. I've always maintained that "righting" the system is not my mission, however, I will not willingly participate in or promote what I believe to be wrong.  It's a matter of principle.

As far as Jack is concerned, his therapist was getting bored with him and his lack of progress and wasn't doing anything of substance when she was with him anyway, so he's not really missing out on any meaningful therapy.

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Thanks for your well wishes for Jack.  We got him started on antibiotics and hopefully once they kick in he can get off the Os and his heart rate will start coming down.  It was a rough week last week because Kristi was out and it's never good for Kristi to be out when Jack is sick because she knows him so well.  

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In case you can't tell, I'm tired and irritated at the world right now. It's time for a vacation.  Mary and I decided not to go to St. Louis during Spring break and instead, we're heading to California for a week of R&R.  It can't come soon enough. 

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In matters of principle, stand like a rock; 

in matters of taste, swim with the current.  

~Thomas Jefferson

I've Tried

I've sat down and tried to write a meaningful post all weekend.  But, alas, the words aren't flowing.  Jack is sick and I've spent most the weekend suctioning and stressing out over Jack's high heart rate (no fever though).  It's been a while since he's been this sick and required this much constant attention (suctioning, diapering, cough assist, breathing treatments, vest, oxygen, yada, yada, yada).

I'm tired.  

More later ... thanks for checking on us.