Sunday, November 29, 2009

Christmas in the Jungle

It's been a (somewhat) relaxing and very enjoyable four day weekend. I retired the Fall decorations in Jack's room and replaced them with a whole lot of Christmas. I added more lights this year and his room looks really cool - especially at night with the lights off (except for the Christmas lights). Jack loves it!

The icicle lights are very cool, although you can't really tell in this picture. I need to get some pictures at night for you to really appreciate the effect

Eric and I got up early this morning and headed out on a road trip to the Boyce Thompson Arboretum - located about an hour East of where we live.  It was nice mom and Eric time.

Eric has the posing for pictures down pat.  He kept stopping and telling me to take his picture :)

The many different types of vegetation in one place was remarkable

Hiking along the trail

my absolute favorite.  He looks so sweet! (and he really can be on occasion)

Have a great week y'all!

Saturday, November 28, 2009

The Boy Who Was Going To Run Away

After getting in trouble this morning, Eric decided he was going to run away from home.  He packed a grocery bag with everything he needed, hung it on his sword and out the door he went.

Needless to say, he didn't make it very far before he realized home wasn't such a bad place.

Thursday, November 26, 2009

A Good Time Was Had By All

I am thankful for cooking bags ... a perfect turkey!

I am thankful for cousins

I am thankful for my little comedian

I am thankful for our family patriarch

I am thankful for him for many reasons

I am thankful for family and friends

Wednesday, November 25, 2009

Happy Thanksgiving

Eric shared his Thanksgiving letter with us today.  I couldn't make this stuff up if I tried:

Dear Family,

I love you.  First of all, I can't believe Mary is only 16 and has a job! For dad, why doesn't Hilery have her drivers license yet? She's 18 for petes sake!  Okay, I'm getting a little carried away here.  But anyway I love you all!  By the way, Dad I'm surprised how strange you act.  But, I like you anyway.  Does the dog still not like me? Well, this is for the dog [insert picture of person sticking out tongue].  Sorry. I don't think that is appropriate.  I am thankful for how hilarious my family is even if the dog doesn't like me.


P.S. I am thankful for God, the land, food and most importantly, my family.


We certainly never want for a good laugh around here with Eric.  I'm not sure if there's any significance to the fact that he failed to mention me and Jack by name.  Maybe that's a good thing :)

This is my fourth Thanksgiving in blogdom.  Wow! I never imagined or intended to blog this many years.  A heartfelt "thanks" to all of my readers who have been following along all these years.  Wishing each and every one of you a Thanksgiving filled with love and laughter.

P.S. If you plan to order one of The Willow Tree Foundation necklaces or keychains as a Christmas gift (and I'd sure love it if you did), please get your orders in soon because I have to order them from the designer, I don't have a supply on hand.  Thanks!

Sunday, November 22, 2009

Relaxing Weekend

It was a fun and relaxing weekend.  Hilary made it home just fine.  She apparently didn't miss us that much because she's spent most of her weekend where she always spends it .... in her room! But, she has been nice enough to hang out and play Wii with Eric.  (Those two have a love/hate relationship.)

I saw a fantastic movie yesterday - Blind Side.  The only movies I like to see are ones that are uplifting and have happy endings and Blind Side fit the bill to a tee. The best part, it's based on a true story.  Definitely, two thumbs up in my opinion.

I'm looking forward to a short work week and spending time with family on Thanksgiving.  Hope you all have a relaxing and fun Thanksgiving week.

Friday, November 20, 2009

Friday's Food For Thought

So damn easy to say that life’s so hard
Everybody’s got their share of battle scars
As for me I’d like to thank my lucky stars that
I’m alive, and well
.     .     .
And today you know that’s good enough for me
Breathin' in and out's a blessing can’t you see
Today is the first day of the rest of my life
Now I’m alive, and well
Yeah I’m alive, and well

(click to see YouTube video) 


Happy Friday!

Tuesday, November 17, 2009

Not So Different

The sweet smile and sparkling eyes are still there .... you only have to look to see them.

Not so different eight years later

Thanks for all your nice comments to my last post.  Thanks for understanding, for "getting it" and for "seeing" Jack for who he is. ♥

Jack is just so happy these days and is staying so incredibly healthy.  I'm amazed at how long his run of good health has been . . . it's been years!  (another advantage of keeping Jack in his cocoon :)


Hilary comes home Friday for Thanksgiving break.  RIT is on a quarter schedule, so she has finals all this week.  I've sent her a few texts this week, but haven't heard a word from her.  I'm hoping it's because she is too busy studying.  I'm nervous for her to make her first flight home by herself.  I know it's not that big of a deal to catch an airplane, but Hilary has a tendency to not pay attention to the world around her and that's not a good thing when you are traveling alone.  All I can do is try and prepare her for the real world, she'll have to learn to survive out there on her own.  I'm (fairly) certain she'll do just fine.


Here's another Eric funny.  He thought it would be fun to give his dad a report card.

Eric has a reputation for his "hurry up and get it done with as little effort as possible" attitude at school. Looks like he was projecting his feedback onto his dad!  Eric also joined the running club at his school.  He's very excited about it and I'm excited it's something he can do without the excuse of "I don't know how to do it".  (Eric is a perfectionist like his mom and, as a result, he is reluctant to try and/or stick with new things.)  Running is the perfect sport for Eric and hopefully it will help burn off some of the pent-up energy that has him bouncing off the walls most days.


Mary is busy with school and working her new job at Target. We are all staying healthy and life really is good! Thanks for checking in.

Thursday, November 12, 2009

Follow-up No. 1

There are several of the "themes" discussed in the article that I posted about in my last blog entry that are worthy of follow-up as they relate specifically to my life and Jack's life.  This follow-up post relates to the theme titled "Conflicting Social Values" and the belief that your child's life is devalued.  My experiences deal more with people not acknowledging Jack as a human being despite the fact that he is right there in the room with them.  This happens quite often when dealing with medical professionals.  I've left more doctors in this City because of the way they have treated Jack.  I've also noticed a huge difference in the way Jack was treated as a baby versus how he is treated now that he is older.  In particular, by those who cared for him when he was a baby in the PICU and when he returned to the same PICU for his spinal fusion surgery seven years later.

Jack was an adorable baby.  He was the "star" of the PICU during the many months he lived there and not only did the doctors and nurses adore Jack, the parents of other kids in the PICU would stop by Jack's bed on a daily basis just to get a glimpse of his smile.

Seriously, could you resist this face?

And, I can assure you his smile was just as bright with an ET tube shoved down his throat!  Jack never lacked for acknowledgment or attention during his early days in the PICU.  The day Jack bailed from the PICU, many notes of love were left for him in a journal that I asked everyone to sign.  Here are just a few of the messages written by the doctors, nurses and RTs who cared for Jack:

"Jack, I look forward to coming to work so I can see you! Seeing you always keeps my life in the proper perspective because even after all you have been through ... you always have that perfect little smile ready to cheer me up! You are just the most wonderful baby boy ...."

"Jack, I will always remember coming into work and looking forward to seeing your absolutely adorable smiling face and your big bright eyes."

"Sweet, Sweet Jack, this old place is going to be a little less bright without your sunshine smile that you were so generous with.  It's has been a wonderful blessing to have known you and your mama.  You are definitely a little angel sent from God to remind us why we do what we do."

"Jack, you are a beautiful baby and I love to see you smile! I am so happy to see you go home, although I'll miss our kisses! You are so sweet and I couldn't forget you or your happy disposition.  Stay happy and smiling forever."

"Jack, what are we going to do without your smiling face? You are so precious and I will miss you terribly.  I'm sad for us, but happy for you."

and they go on and on .....

Then Jack grew up and his disease stole some of his "brightness" and tempered his smile.  He's still the same sweet Jack, but so many people don't see it -- won't see it -- because they can't look beyond the tubes and the paralyzed body to the little boy who lives in there.

When Jack returned to that same PICU, where many of the same people who wrote those notes still work, he didn't get quite the same reception.  The care he received was excellent, but it didn't go beyond that.  No more "hi sweet Jack, how are you doing?" These same people walked past his room and waved "hi" to me, but didn't come in the room to see Jack.  They too couldn't see past what his disease had done to his body ... and his smile.  It broke my heart.

Shortly after that PICU stay, I had a discussion with one of Jack's former doctors regarding this change in attitude towards Jack.  Here is what he shared:

"I totally believe you can see a difference in attitude of nurses caring for him now compared to when he was a baby, but frankly, with chronically ill children - communicative or not - as they get older they get less "cute".  Heck, it's why so many people go into pediatrics in the first place.  Sick adults are just not as much fun as sick children. And, whether it's inherent in our programming or not, the younger the child, the "cuter" they are.  So, perceptive people like you with children with chronic conditions perceive the difference in attitude. But, it does not mean that people care less -- it's just different."

Incidentally, this is what I love about this doctor  - he is as forthright with me as I am with him (and we've had some great discussions as a result).  He listens to what I have to say, but he still tells it like it is - always in a supportive way. He acknowledged what I already knew and I respect him for that.  But, it still bites and it makes me sad for Jack.

And mad too.

And it's why we stay away from hospitals and doctors and people in general.  It's why we keep Jack safely cocooned at home surrounded by people who can see the sweet little boy underneath his paralyzed shell. It's where Jack is treated like a human being who can see and hear and as someone who has feelings and an opinion.  We stay secluded at home because it's where people aren't afraid to talk to Jack even if he can't talk back.   It may not be the "right" thing to do, but it's what we do.

Monday, November 09, 2009

Daily Living With Distress and Enrichment

This weekend, I was looking through some of the papers and articles I’ve accumulated over the last eleven years.  I came across an article that I shared on the message board back before I started blogging.   I think it is worth sharing again with those of you who follow my blog who also "live the life" or who are close to those of us who do.

The article discusses the results of a study of families of children who are supported by a ventilator or positive-pressure device at home.  The results were not surprising and, from my perspective, were spot on.  I also think much of what this study revealed is true for parents of any medically fragile or chronically ill child, not just parents of children who are ventilator dependent.

The study explored the moral dimension of family experience through detailed accounts of life with a ventilator dependent child and examined the moral phenomena inherent in (1) the individual experiences of the ventilator-assisted child, siblings and parents and (2) the everyday family life as a whole.

The study identified six principal themes:

1.  Confronting parental responsibility: parental responsibility was described as stressful and sometimes overwhelming. Parents needed to devote extraordinary care and attention to their children’s needs. They struggled with the significant emotional strain, physical and psychological dependence of the child, impact on family relationships, living with the daily threat of death, and feeling that there was “no free choice” in the matter: they could not have chosen to let their child die.

2.  Seeking normality: all of the families devoted significant efforts toward normalizing their experiences. They created common routines so that their lives could resemble those of “normal” families. These efforts seemed motivated by a fundamental striving for a stable family and home life.  This “striving for stability” was sometimes undermined by limitations in family finances, family cohesion and unpredictability of the child’s condition.

3.  Conflicting social values: families were offended by the reactions that they faced in their everyday community. They believe that the child’s life is devalued, frequently referred to as a life not worth maintaining.  They felt like strangers in their own communities, sometimes needing to seclude themselves within their homes. 

4.  Living in isolation: families reported a deep sense of isolation. In light of the complex medical needs of these children, neither the extended families nor the medical system could support the families’ respite needs.

5.  What about the voice of the child? The children in this study (patients and siblings) were generally silent when asked to talk about their experience.  Some children described their ventilators as good things.  They helped them breathe and feel better.  Some siblings expressed resentment toward the increased attention that their ventilated sibling was receiving.

6.  Questioning the moral order: most families questioned the “moral order” of their lives.  They contemplated how “good things” and “bad things” are determined in their world.  Parents described their life as a very unfair situation, yet there was nothing they could do about it.  Finally, an overarching phenomenon that best characterizes these families’ experiences was identified: daily living with distress and enrichment.  Virtually every aspect of the lives of these families was highly complicated and frequently overwhelming.  An immediate interpretation of these findings is that families should be fully informed of the demands and hardships that would await them, encouraging parents perhaps to decide otherwise.  This would be but a partial reading of the findings, because despite the enormous difficulties described by these families, they also reported deep enrichments and rewarding experiences that they could not imagine living without.  Life with a child who requires assisted ventilation at home involves living every day with a complex tension between the distresses and the enrichments that arise out of this experience.  This irreconcilability is particularly stressful for these families.   Having their child permanently institutionalized or disconnected from ventilation (and life) would eliminate both the distresses and the enrichments.  These options are outside of the realm of what these families could live with.


I found it very interesting to read that a lot of the stress we feel in our daily life is attributable to the inability to reconcile the tension between the distresses and the enrichments that arise out of this experience.  It makes a lot of sense, but I never really thought about it that way until I read the article. I don't know that we can ever truly reconcile the hardships and the joys of this experience. For "survival"  purposes we have to try and keep focused on the enrichments our child brings into our life (and there are many).  But, it's also important to recognize and accept (without guilt) that somedays we won't be able to think past how tired, sad and lonely we are and that is okay too.  It's a delicate balance (and utterly exhausting) to find a place of inner peace given our daily struggle to reconcile the distresses and enrichments of this life.

The article discussing this study was published in the January 2006 issue of Pediatrics (the official journal of the American Academy of Pediatrics).  If anyone wants a copy of the article email me and I'll send it to you.  I have it saved on my computer at work, so just know if you want a copy it will be coming from my work email.

Thursday, November 05, 2009

Happy Birthday Pics

Happy Birthday To You

Happy Birthday To You

Happy Birthday Dear Jack

Happy Birthday 

To You!

And Many More . . .

Thank you all for your sweet birthday wishes.

Wednesday, November 04, 2009

Happy Birthday Jack

Eleven years ago today, Jack and I began our journey down a road on which I spent many years desperately searching for a U-Turn.  I never found that U-Turn, but I discovered so much more along the way: courage, hope, patience, perseverance, acceptance and abounding friendships.  What a privilege it is to be Jack's mom.  Happy Birthday Buddy!


Email post is below.


Of all the doctors whose emails I share below, only one still remains at St. Louis Children's Hospital and continues to provide care to Jack as a patient. The other doctors have moved to other top Childrens' Hospitals around the country, yet they continue to be there for me and Jack - whether to answer questions or to simply listen and give support.  I am very fortunate to have found such a remarkable team of doctors who have gone above and beyond the call of duty and who have been there to hold my hand and walk me through the last eleven years.


June 24, 1999
Dr. M,
We’ve been home for two weeks now and we’re still home, so that is good news. Jack had a terrible Monday – Sally from the PICU was here as his nurse and he had her hopping. He spent most of the day on the vent. We are not sure why he had such a tough time on trach collar. He has done well the rest of the week, however, his secretions have increased slightly and have gotten a little thicker. They are still clear, so I don’t think he has an infection.

His feedings have gotten a little better, but he still has trouble keeping them down. His first feeding in the morning is his toughest. I asked Dr. H to prescribe Reglan, which he was on prior to being admitted to the PICU. I haven’t given it to him yet, but if he continues to have trouble keeping his feeds down, then I’ll probably give it to him. Any thoughts on this?

That’s our update. I’ll let you know if anything significant shows up.

June 25, 1999
Glad to hear Jack is doing so well. Please keep us posted and let us know if we can otherwise help at all.  Go Jack Go!


November 23, 1999
Dr. G,
Jack had a lot of coughing this am with moderate secretions – more like allergy symptoms. I gave him an albuterol treatment this am. Around 6pm tonight he looked a little distressed and sounded collapsed on his right side again, so I have him albuterol, PD and I bagged him for a few minutes to open him up. I turned his rate from 8 to 6 – you wouldn’t think it would make such a difference. Jack must have a low tolerance for change – just like his mom!

March 6, 2000
Dr. G,
During the day Jack has been on a rate of 4 and pressure support of 8. I did turn down his rate to 1 for several hours on Saturday and he did okay. At night he remains at 10 and 10.

To be honest with you, I’ve lost all interest in weaning Jack from the vent. It seems that every time we start making progress he gets sick and we go backwards. It’s easier just to not have any expectations. Interestingly, it has been one year today that Jack has been on a vent – a depressing statistic.

Maybe you can give us a “plan” for weaning – as I’m tired of trying to figure Jack out.

March 27, 2000
Dr. C,
I wanted to let you know that I’ve decided that I will agree to have an MRI of Jack’s brain. Because I’m convinced that there is nothing wrong with him cognitively, I guess I shouldn’t worry about what the scan might reveal. Anything that might get you closer to figuring Jack out is worth a shot.

May 15, 2000
Dr. M,
I received a copy of the report from Dr. B and its states, in part: “there is moderate diffuse cerebral atrophy with prominence of the ventricular system and sulci. There is absence of the inferior vermis and of the cerebellar tonsils bilaterally. The remainder of the posterior fossa appears unremarkable.”

I spent a good part of this afternoon down at the medical library researching what I could so that I can better understand what Dr. C will have to say and to come up with some questions of my own. Like you said, I’m focusing on Jack and his progress, not some textbook explanation of what these brain abnormalities mean.

P.S. Jack has been tolerating pressure support trials of up to 5 hours a day - 2 hours in the morning and three hours in the evening (can you guess who is doing the evening trials?) During the trials his rate is 0, pressure support 4 and peep 5. Maybe we’ll get back on trach collar soon?

May 30, 2000
You already know what my advice would be – don’t push him too, too hard. Don’t look at it as how he is compared to his best, look at it compared to his worst. Now that is a long way. I would really encourage keeping a minimum rate and pressure support during sleep until you’re sure he’s really OK on trach collar for a while during the day.

Congratulations! You have really done an incredible job with him. Now, there is no way he can give you any trouble as a teenager.


September 1, 2000
Dr. M,
The alarm that is going off is “volume error”, and, although I appreciate your confidence in me, you guys are giving me too much credit when to comes to vent settings. I have an understanding as to what the range is for his pressure support and rate, but when you suggest that I go up or down on certain settings, I need numbers.

I turned his sensitivity setting up from 3 to 5. He did not alarm at all last night, but he was positioned on his side and his night nurse did not reposition him at all. But this morning, when I repositioned him on his back, he did alarm, but only once. So maybe changing the sensitivity did help some. Should I adjust his tidal volume next? If yes, give me a number. Doesn’t tidal volume only come into play when he has a rate. With a rate of only 8, how does changing the tidal volume make much of a difference?

September 1, 2000


The alarm that is going off is “volume error”, and, although I appreciate your confidence in me, you guys are giving me too much credit when to comes to vent settings. I have an understanding as to what the range is for his pressure support and rate, but when you suggest that I go up or down on certain settings, I need numbers.

OK, 1, 2, 3 … sorry, just kidding.

I turned his sensitivity setting up from 3 to 5. He did not alarm at all last night, but he was positioned on his side and his night nurse did not reposition him at all. But this morning, when I repositioned him on his back, he did alarm, but only once. So maybe changing the sensitivity did help some. Should I adjust his tidal volume next? If yes, give me a number. Doesn’t tidal volume only come into play when he has a rate. With a rate of only 8, how does changing the tidal volume make much of a difference?

. . .

It would really help to have someone stand there and turn the dials and see what is happening. Do respiratory therapists still come out? Can they call us next time they are there? I would suggest you bring him by the hospital but I know how much you love to visit (NOT!) and besides, if it only happens when he sleeps, stopping by may not help.


November 13, 2000
Dr. C,
I had emailed Dr. H regarding his progress on the research he was doing with respect to Jack’s muscle tissue. I have forwarded his response I received. Could you please tell me what the results sent to you said? What did they test for that showed up as “normal”? I’d like to know what diagnoses can be excluded. I realize you are busy and have many patients, but my life is Jack and I live daily with his condition and not knowing where we are heading. I’d appreciate receiving all information you receive regarding Jack. Unless someone tells me that there is no hope of him getting better then I am going to pursue any and all avenues relentlessly ruling out treatments rather than just assuming they won’t help. I’d still like to know why we can’t try IvIg treatments. The steroids clearly helped some, but they didn’t put him in remission if that is a possibility. I need to know that it won’t help, not just assume it won’t. Dr. S said that you felt side effects from steroids were less than with IvIg treatment. Don’t you think that should be my call?

March 23, 2001
Dr. G,
Jack is not doing so great. Lots and lots of secretions, coughing, puking, suctioning (you get the picture).  It seems more like allergy symptoms to me, since it’s so much upper airway congestion. His secretions still remain fairly clear and once you get him all suctioned out his lungs sound clear. Not much we can do I guess except to try and dry him up. I called Dr. R’s office after hours on Wednesday to see if they had any suggestions for meds to help him. I got Dr. L – who was a jerk. The first thing he asked me was whether Jack was a full code! Apparently, he felt if I was concerned enough to call a doctor, then it must be serious enough to call 911. Dr. L had no suggestions for helping Jack and he said that kids Jack’s age don’t get allergies and that I should call my pulmonologist. Now you can understand why I prefer to deal only with you. In all fairness to Dr. R, I’m sure he would have handled it differently. I really didn’t see any reason to call Dr. S, mostly because I would not have gotten her anyway, I would have gotten a resident who doesn’t have a clue about Jack.

Sorry to vent. I’m sure we’ll get through this like we always do. Have a great weekend – hope you get to spend it outside of the hospital.

April 10, 2001
I can appreciate your frustration about Jack and getting answers. I wish there was a solution to the problem. Believe me, though it is not my area of expertise, if I come across anything that might shed light on Jack, you’ll be the first to know. But, as you must know, if people like Dr. C and the people at Wash U’s neuromuscular disease center are ultimately stumped, there is little that mere mortals like you and I will discover. But it needn’t stop us from trying.


May 8, 2002
Dr. M,
Just wanted to give you a Jack update – he is doing great. Dr. S increased his tidal volume because he was dropping his sats at night and seemed to have something going on with his right side. It was only supposed to be a temporary situation, but you know Jack, once you give him more support he almost never wants to give it back. Doesn’t look good for him ever getting off the vent, eh? Really wish I could get a prognosis on the kid. I broke down and made an appointment with Dr. C before we leave – don’t know why I don’t like to see her, guess because she never has any good news.

We don’t have any appointments down at Children’s before we leave, they are all at Missouri Baptist. We are planning a “Thank you” party for everyone who has been a part of Jack’s life here in St. Louis – details to follow.

January 31, 2004
Dr. S,
Have any desire to move to Phoenix? Jack is in desperate need of someone to manage his vent. He hasn’t seen Dr. P since May and his vent settings haven’t been adjusted for over a year. Jack is doing very well all things considered. It is my mission to get one of the hospitals in this city to recruit a pulmonologist who specializes in kids and vents. Although my current mission is planning a conference that will take place in June in St. Louis for families of kids with trachs. SLCH has agreed to be one of the sponsors for the event and we are hoping to get a panel of doctors from the hospital to speak on various topics that are relevant to our kids. Are you available?

On another note, I’d like Jack to see you when we come to St. Louis is June. Do you see any benefit in updating his PFTs and/or checking for any change in the movement of his diaphragm? I don’t want to have a bunch of tests run just to do them, but if you think we can gain some useful information from the tests, I like to have them done. If you’d be willing to adjust his vent settings that would also be good!

July 19, 2005
Dr. M,
We are home and Jack is doing great. I think he tolerated the last two weeks better than the rest of us. It was good to see you and I was very happy you were covering the PICU for part of Jack’s stay. I really appreciate you letting us bail from the hospital even though you weren’t 100% comfortable with Jack’s x-ray. He seems to be fine with no signs of a pneumonia. I’m tempted to stop the antibiotic, but I won’t.

We’re supposed to come back in 2 months for a repeat bronch. I can’t even think about that right now. There has to be an easier way to get Jack to St. Louis, I just haven’t figured it out yet!

July 19, 2005
Glad to hear you made it OK and that Jack is holding up.

Well, you know we would not have released him to just anyone.


August 19, 2005
Dr. M,
Dr. C called me today and after six plus years and two muscle biopsies, we can now give a name to Jack’s condition: Congenital Muscular Dystrophy secondary to reduced alpha dystroglycan. Try saying that 3 times fast! I know giving it a name doesn’t change a thing – it just means I can’t be in denial any longer. Most people would think, how in the heck could I be in denial – all you have to do is look at Jack and it’s pretty obvious he’s got some serious issues going on. But, it’s amazing what you don’t see when you don’t want to (not that I saw a perfectly healthy kid who was going to get off the vent and run a marathon some day). I guess he is officially one of “Jerry’s Kids” – a club I’ve tried to avoid like the plague.

Anyway, life goes on. We’ll be back to St. Louis the first week of October. Let me know if you’ll be around on the 5th of October – Jack has a bronch that day.

January 13, 2006
Dr. M,
I need help trying to figure out Jack and since Dr. S is still incognito, I thought I’d ask you. I won’t give you the specific details of what’s going on with Jack because I’m not asking you to diagnose him via email. My question – can a kid have pneumonia even if his sats are fine (> 95) and his secretions are not colored or excessive? The only symptoms are a high heart rate and he looks like he’s working to breathe. (Ok, so I gave you a few details).

I’m lost and frustrated and Jack is not a happy camper.

January 13, 2006
Speaking hypothetically, yes, one can have pneumonia without those findings. On the other hand, just based on heart rate and increased work of breathing, a pneumonia is not the only thing to consider in a child with a trach (I’m thinking airway obstruction at some level).

January 13, 2006
Dr. M,
Hypothetically speaking, I’d rather have my toenails ripped off one by one than deal with the doctors in this City. You mention airway obstruction and I’m thinking ENT - we are in big trouble because I’ve pretty much run through all the ENTs here. So, my only option is to wait until the issue becomes acute and then take him to the ER. It’s Friday the 13th and there’s a full moon – the ER is definitely the last place I want to be tonight!

Thanks again – I’ll let you know if it’s anything serious.

February 9, 2006
I was invited to a conference of the peds neurologists the other day. The discussion was about predicting outcomes with neurologic disabilities, ethical issues and how to speak to families, etc. AC actually mentioned her experience with you and Jack, without your names of course. But, I knew who she was talking about. You see, Jack (and you) continue to teach us and hopefully make things better - at least in terms of how we communicate.


August 1, 2006
Dr. M,
I’m too emotional right now and will probably do something stupid like cry. I’ll be fine. It’s just the BS politics of being on the floor. No one can make a decision around here – too many teams involved, but no one will own the problem. If we were in the PICU, the issue just gets resolved.

February 4, 2007
Dr. M,
As far as our recent experience at SLCH, I’m sure the dreadfulness of it all was amplified, in my mind, by the absence of you and P. I just hate it when I’m forced to make decisions that I don’t agree with – which was the case with the broviac/vanc. But, it’s done and over with and time to move on.

And, please, stop giving me so much credit for keeping Jack alive. I appreciate your kind words, but let’s be honest, it’s a damn machine keeping Jack alive, not me. I suppose the fact that I know how to keep the machine running helps some.

February 4, 2007
You are taking me literally about Jack. Of course the machine is “keeping him alive”. What I’m saying is that I’ve seen a lot of medically fragile kids either just wither and die or not have the kind of life you’ve provided for him – in spite of the machines. And with regards to whether doing all this was the right thing, only your heart can answer that. Watching the latest video clip of him – obviously happy – answers the question in my mind. But it’s your mind and Jack’s mind that matters.


April 15, 2008
Dr. H,
I want to share a letter with you that I wrote several months ago as part of a first year medical student’s project for her “Reflections on Doctoring” course. I shared the letter with Dr. M and he felt it was worth sharing with the physicians on the website. I am passing the link to the letter your way in hopes that you might feel its worth sharing with the physicians in training who you work with. It is my plan, as an extension of this letter, to have pocket stones with the words “kindness”, “care” or “compassion” engraved on them and provide a stone to young physicians to carry in their white coats as a reminder of what’s important when interacting with their patients and patients’ families. Let me know of if you are interested in being part of the pocket stone project.

April 16, 2008
I am intrigued by your “Pocket Stone” project and would be very interested in partnering with you. We spend an enormous amount of time trying to teach compassion and professionalism to young physicians.  I have long maintained that there is very little I can add if it wasn’t given to them in their formative years by their parents and yet, I am learning with time that you can teach some old dogs new tricks! Let me know what I can do and how I can help.

This was the perfect email to finally get to at the end of a long 36 hours in the PICU. It helps to remind me that we can all make a difference.

October 14, 2008
Dr. S,
We just returned from a week of appointments in St. Louis, including a sleep study. The report will go to AC, who will provide the report to me to give to Jack’s pulmonologist here in Phoenix. I’d like to provide a copy of the report to you and get your thoughts. Jack had to be admitted for the sleep study and we saw Dr. S. - he asked why I don’t see the pulmonologist at Phoenix Children’s. When I explained my reasons why, his comment was that I’ve just been “spoiled” by you. Very true! (and I sure miss having an advocate like you on my side).

Jack is doing well, all our appointments went well in St. Louis and all things considered …. Life is good.

October 15, 2009
It was an honor to "spoil" you and Jack.

June 18, 2009
Dr. S,
I wanted to let you know that I’ve become involved in a newly formed organization called Cure CMD. One of the things Cure CMD is trying to do is put together a list of “top docs” for kids with CMD as part of their standard of care initiative. I was asked to recommend a pulmonologist to add to the SOC effort. Of course, you are at the top of my list. I just wanted to give you a heads up in case you should happen to receive some information from Cure CMD.

September 8, 2009
Just in case you haven’t heard, I am on the CMD standard of care committee. I am the US pulmonary group leader. Thank you for mentioning my name. Didn’t you tell me that they had identified what form of CMD Jack has? If so, could you remind me which one? It will help me put some of the information into perspective with the other CMD’s we are working on. Hope all is well with your family.

Tuesday, November 03, 2009

Prelude to the Birthday

Jack will celebrate his 11th birthday on Wednesday. As I usually do around Jack's birthday, I find myself thinking about where we started, where we've been and where we are today.  As many of you know, through the years I've written down my thoughts on Jack's birthday and have shared them with family and friends via email and on this blog.  As I ponder the last eleven years, I find myself thinking about how little Jack has changed, and how much I have changed over the years.  In terms of progress, Jack has made none in eleven years.  Yet, he remains the same easy going, content, sweet little boy today that he was the day he left the PICU at the age of seven months.  I, on the other hand, have morphed from a maniac taskmaster whose sole focus was to make this all go away into someone who is at peace with Jack's diagnosis.  More significantly, I'm learning to take the experiences and knowledge gained from living this very crappy hand that Jack and I (and the rest of our family) have been dealt and directing it in a positive light to try and make a small difference in this world.  Jack has changed me profoundly and together we are working to leave his faint footprint in the sands of time.

In thinking about how much I've changed over the last eleven years, I decided to pull out my stack of emails that I've exchanged with Jack's doctors since June 1999. There are literally hundreds of emails and oh, how they tell my story.  I'm somewhat appalled at the tone I took with Jack's doctors in the beginning - I sure was bossy!  I'm surprised they even stuck with me all these years given the attitude I had in the beginning.  On Jack's birthday, I will share with you some of the emails (mostly mine and a few by Jack's docs) that have been written over the last eleven years.  I think they do a good job of reflecting how my attitude and my focus changes and how much I "lighten up" with each passing year.  It was really hard for me to pick which emails to share.  I could have shared many more, but it would have made for a very, very long post (as opposed to only a very long post).  I'm not sure if anyone will even find the emails remotely interesting, but I'm doing this for myself more than anything.  Someday, I hope to write a book that is a compilation of all the emails exchanged between myself and Jack's doctors . . . when the time is right (and with their permission, of course).

See you back here Wednesday.