Friday, February 29, 2008

Friday Food For Thought

Pearls of Wisdom

An oyster is soft, tender and vulnerable. Without the sanctuary of its shell it could not survive. But oysters must open their shells in order to “breathe” water. Sometimes while an oyster is breathing, a grain of sand will enter its shell and become a part of its life from then on.

Such grains of sand cause pain, but an oyster does not alter its soft nature because of this. It does not become hard and leathery in order not to feel. It continues to entrust itself to the ocean, to open and breathe in order to live. But it does respond. Slowly and patiently, the oyster wraps the grain of sand in thin translucent layers until, over time, it has created something of great value in the place where it was most vulnerable to its pain. A pearl might be thought of as an oyster’s response to its suffering. Not every oyster can do this. Oysters that do are far more valuable to people than oysters that do not.

Sand is a way of life for an oyster. If you are soft and tender and must live on the sandy floor of the ocean, making pearls becomes a necessity if you are to live well.

Disappointment and loss are a part of every life. Many times we can put such things behind us and get on with the rest of our lives. But not everything is amenable to this approach. Some things are too big or too deep to do this, and we will have to leave important part of ourselves behind if we treat them this way. These are the places where wisdom begins to grow in us. It begins with suffering that we do not avoid or rationalize or put behind us. It starts with the realization that our loss, whatever it is, has become a part of us and has altered our lives so profoundly that we cannot go back to the way it was before.

Something in us can transform such suffering into wisdom. The process of turning pain into wisdom often looks like a sorting process. First we experience everything. Then one by one we let things go, the anger, the blame, the sense of injustice, and finally even the pain itself, until all we have left is a deeper sense of the value of life and a greater capacity to live it.

My Grandfather's Blessings
by Rachel Naomi Remen, M.D.

Thursday, February 28, 2008

Let the Record Reflect

Since I received several comments/emails commenting on whether I actually baked the cookie Eric was eating ... let the record reflect that ..........

YES, I did in fact bake those cookies! I do know how to turn on the oven.

I will confess, however, that I had a little help from my friends at Costco.


Tomorrow is Friday .... oh happy day!


Wednesday, February 27, 2008

Wednesday Update

Today is Wednesday, right? My days all seem to run together anymore .....

Had Jack's IEP meeting and, surprise, surprise -- they want to cut his services. OT wants to come 1 hour a month instead of 1 hour a week. Teacher wants to come 2 hours a week instead of 3 and, oh ... btw, we STILL don't have a speech therapist for you, so we'll just keep having the teacher cover the speech goals. Yes, it is so wrong and yes, I signed the IEP. I just don't care. We don't need those people to make sure Jack is "successful" in life. If we did, trust me ... I'd be putting up a fight. They did ask me to sign a paper that would allow our school district to bill Medicaid for the therapy services it provides Jack. I refused. Our school district doesn't begin to pay the kind of money they would have to if Jack attended school (nursing alone would cost them $500/day). I will not have any part of the school district's scam to get the state to foot the bill for therapy. I was told to expect a call from the school district. I told them, I look forward to the phone call.

No response to my email re: the status of the eye gaze system. The person I deal with at Eye Tech is usually very responsive, so I'm not sure what is up with that, but I've been too busy at work to make any phone calls.

That's the latest and the greatest from the Schrooten Ranch.

Some pics:

Mary had first high school track meet today


there's nothing better than a chocolate chip cookie right out of the oven and a glass of chocolate milk

Sunday, February 24, 2008

Nothing

There's a whole lot of nothing going on around here. We had a quiet weekend and I stayed in my PJs for the good part of Saturday. Mark did all the running around -- Mary to school for track team pictures and practice; Eric to soccer; Mary home and then to Irish dance. Jack and I just hung out all day. Sunday is my day to get up early to hike and then go into the office for a few hours. Kristi has been working every Sunday, which has been nice because I can be away from home without feeling guilty.

Jack continues to do awesome. It really is remarkable how healthy he stays for a kid on a vent. Notwithstanding the viral thing he had the last few weeks, he's having a good year. I consider it a good year when he doesn't require oxygen or antibiotics. I have no idea how Jack compares to other kids his age, with his disease and level of medical intervention when it comes to being sick and/or requiring hospital stays, but I do think Jack is an exception given the fact that he has never (in almost 10 years) been admitted to the hospital for a respiratory issue (knocking on wood). I'm sure it has a lot to do with the fact that he doesn't attend school -and the fact that it takes a LOT to get me to take Jack to a doctor. I vowed when Jack left the PICU in the summer of 1999 that we would never end up back there again. I was so adamant that I never wanted to see that place again, that when Jack was showing signs of a bowel obstruction only 2 months after leaving the PICU, I almost waited too long to take him in. I still remember sitting in the ER just sobbing because I did not want to end up back in the hospital. I had been a prisoner of that hospital every single day for almost 6 months and I couldn't do it again. I also remember that the surgeon was a complete jerk because he couldn't (or wouldn't) understand why I didn't want Jack admitted. Fortunately, my favorite PICU intensivist showed up and compassionately convinced me that Jack needed to be admitted (for what ended up being a short three day PICU stay). Wow .... that seems like so long ago. Whatever the reasons, I'm just thankful Jack does so well and I definitely do not take for granted how lucky we are to not spend much time in a hospital with Jack.

I have another busy week of Jack stuff. He sees his orthopedic doctor tomorrow for a follow-up spinal x-ray. On Tuesday we have our every two month meeting with the vent dependent program rep, nursing agency rep and Department of Developmental Disabilities rep. I don't understand why we have to meet every two months ... it's not as if he is going to miraculously get off the vent in that time. Every six months really would be sufficient. But, since I don't make the rules, I'll play the game - as if I have any other choice. Tuesday is also Jack's IEP with the school district. If you recall, in the Fall of 2006, I filed a complaint against our school district with the Department of Education because they were in violation of Jack's IEP. They were found to be "not in compliance". Apparently, it had no effect on them, because they have been in violation of Jack's IEP more this last year than in 2006. I don't even have the energy to get into how grossly they have failed to comply and, sadly, I don't really have the energy to get into it with them at the IEP meeting. I can live without them providing services because Jack gets wonderful services through DDD. What I can't live with is their attitude. The attitude that they actually believe they are doing right by Jack. It's just such a bunch of $#@! I'm not sure yet what I'm going to say at the IEP meeting. I really could use an advocate when it comes to the school district. Not because I don't know what my rights are, but because I don't have the energy or the time to deal with them. I just ask myself ... at the end of the day will it really matter. To me, the answer is "no".

I'm still waiting to hear when we'll get the eye gaze system. It has been approved and ordered. Last I heard, the problem is that the company that provides the system is not on our state's vendor list. We have to wait until they jump through all the necessary hoops to be an approved vendor before we can get the system delivered. I haven't heard from the attorney regarding the status of the appeal with UHC. Follow-up phone calls/emails are in order. Just more stuff to add to my plate.

Well, for someone who doesn't have much going on, I sure had a lot to say :-)

This morning on my hike, there was the most amazing sunrise. I didn't have my camera with me, but I took a few pictures with my cell phone.




Have a great week my friends. Thank you for reading. Thank you for caring.

Wednesday, February 20, 2008

A Beautiful Day In The Neighborhood

Today was just a great day all the way around. Jack had an appointment with the orthotist to pick up his new DAFOs and hand splints. I drove into Phoenix for Jack's appointment, drove Jack (and Kristi) home and then turned around and drove back into Phoenix for my mom's appointment with the oncologist. My mom had her every two month MRI today and her scans are still clean! Great news if you consider that, according to what the doctors told us last July, my mom should be in her final months of life right now. Since I had appointments for the majority of the day, I decided not to go into work this afternoon. I picked Eric up from school, we went to the mall, had ice cream, got the car washed and enjoyed the beautiful, sunny weather. And the most amazing part of the day - I cooked dinner tonight! (that is truly amazing, believe me.)

I think taking every Wednesday off is a great way to get through the work week. I feel so refreshed and relaxed. Although, that might have something to do with the beer I just finished :-) I really could use more days like today!


handsome Jack


Jack's new "camo" DAFOs


hand splint to counteract wrist and finger contractures


Mark took Eric to the train museum on Monday -- Eric was in his glory




~Enjoying the moment~

Sunday, February 17, 2008

What About My Needs, Mom?

It's been about 9 years since I've had a kid in Kindergarten. I now remember that Kindergarten is all about birthday parties ... lots of them. It seems that almost every weekend lately, Eric has been at a birthday party. Does this mean I'm required to host a mob of 5 and 6 year olds come Eric's birthday in March? I'm really too old for that.

I usually go out and buy the birthday gift without Eric in tow because he just whines about why he can't get a toy too. Yesterday, as I was wrapping the gift, Eric was complaining about how everyone gets a birthday present but him. I explained to him that the birthday kid gets the presents and he gets to go to a really cool place and run around and have fun. His response ... "What about MY needs?" Are you kidding me?! His needs, indeed! Does that not sound like a typical male? I have no idea where he gets this stuff from.

Eric's disappointment about not getting a present was tempered somewhat when an unexpected gift arrived in the mail for him yesterday. One of the moms on the trach message board sent him a book titled "The Bug Scientists". On the front of the book is a picture of her dad (who I believe is an entomologist) with bugs on his face. Eric loved it! (Thanks Suzanne)




We've had a quiet and uneventful weekend. Tomorrow is a holiday for the kids and Mark. Technically, it's a holiday for me too, but I've got a morning meeting scheduled, but hope to be home early. Have a great week my friends!

Live well, laugh often, love much!

Friday, February 15, 2008

Friday FFT

Friday Food for Thought
***********************

Everyone alive has suffered. It is the wisdom gained from our wounds and from our own experiences of suffering that makes us able to heal. Expertise cures, but wounded people can best be healed by other wounded people. Only other wounded people can understand what is needed, for the healing of suffering is compassion, not expertise.
. . .

Listening is the oldest and perhaps the most powerful tool of healing. It is often through the quality of our listening and not the wisdom of our words that we are able to effect the most profound changes in the people around us. When we listen, we offer with our attention an opportunity for wholeness. Our listening creates a sanctuary for the homeless parts within the other person.
. . .

Listening creates a holy silence. When you listen generously to other people, they can hear truth in themselves, often for the first time. And in the silence of listening, you can know yourself in everyone. Eventually you may be able to hear, in everyone and beyond everyone, the unseen singing softly to itself and to you.

Kitchen Table Wisdom
Rachel Naomi Remen, M.D.


Dr. Remen is one of the earliest pioneers of holistic and integrative medicine and has trained many thousands of physicians to practice medicine from the heart. Her groundbreaking curriculum The Healer's Art is taught in nearly half of America's medical schools.

Wednesday, February 13, 2008

Update and then some

UPDATE:

Jack is back to his old happy and healthy self. Yippee!! The constant suctioning has ceased, the breathing treatments have been cut back to twice and day and the heart rate is much lower. It makes me so happy when we can get through an illness without having to see a doctor. It's not that I don't like doctors ....

I also received word today that our Department of Developmental Disabilities has approved and ordered the eye gaze system. Another, Yippee!! I'm guessing we'll have the system delivered sometime this week or next. I also think the UHC appeal will be filed this week as well. I hesitate to say "I've no doubt" that the denial will be reversed, but I really have no doubt that the denial will be reversed.

AND THEN SOME:

Speaking of doctors, I recently learned of a “Dear Physicians of the Future” letter writing campaign that a first year medical student is working on as a special project. The request put out by the medical student said:

As part of one of my courses Reflections on Doctoring, I am putting together a compilation of letters from patients to future physicians. I know that this will be useful for future doctors like me to read about patients' and families' experiences and it will make us better doctors in the long run. What I am hoping you'll be able to do is write a letter entitled: Dear Future Physician and then tell me anything that you think would be important... maybe you liked the way a certain doctor treated you and the difference it made.

Naturally, I couldn't pass on the opportunity to share my thoughts with these soon to be practicing physicians. Here is my letter -- much of which you will have already read in one post or another on this blog.

**********************
Dear Physician of the Future,

On a cold January day in 1999, my two month old son was admitted to the Pediatric Intensive Care Unit in respiratory distress. Five months later, he left the PICU with a tube in his neck, a tube in his stomach and connected to a ventilator to support his breathing. My son was born with a congenital muscular dystrophy and, as a result of his disease, he has severe muscle weakness and is ventilator dependent 24/7. As the parent of a child with chronic and complex medical needs, it’s not only important to find a physician who is knowledgeable and skilled in his or her specialty, it’s perhaps more important to find a physician who will give me and my child his or her time, who will listen, and who is willing to go the extra mile in this time of managed care. It’s important to find a physician who cares.

As my child’s physician, you need to understand that I was sent home with a medically fragile child and I had no choice but to learn how to care for him. I am capable of changing out a tracheostomy tube and replacing a gastrostomy button. I know how and when to suction my child’s airway, give breathing treatments, and hook up the oxygen. I can bag my child through a period of respiratory distress. I can adjust ventilator settings and troubleshoot a ventilator. If my child requires a hospital stay, don’t treat me as though I don’t know how to care for him and don’t prohibit me from being an active participant in his care. Remember that I am part of the team and my vote counts in all decisions to be made. While I didn’t go to medical school, I know more about my child and his medical condition than you do. When I bring something to your attention, please genuinely consider it. Respect me.

Recognize that sometimes all I need for you to do is to listen as I vent my frustrations and fears. I don’t need you to have all the answers, I just need you to care. Make yourself accessible. Give me your email address and don’t be opposed to answering my questions in writing. Return my phone call the same day I leave a message. I will only email you or call you when I really need your help.

Be honest and forthright with me, but don’t give me the worst case scenario only. Take the time to share all the possibilities and options and give me time to process the information. Don’t take it personal if I seek a second opinion or choose a different course than you recommend. Remember that a diagnosis is an opinion, not a prediction. Never underestimate the importance of hope.

Because of his disease, my son cannot walk, talk or breathe on his own. Yet my son is a human being with feelings. When you walk into the room, acknowledge my son. Talk to him—he can hear. Look into his eyes—they will speak to you. See his smile—it will light up the room.

Over the last nine years, I’ve had the opportunity to spend a great deal of time in the presence of physicians. I’ve encountered the good, the bad and the indifferent. But, by and large, I’ve had the privilege of dealing with an exceptional team of physicians who have provided the best of care to my son. One of my biggest fears the day my son and I left the PICU was of being abandoned by the people who—from my perspective—put me in this position in the first place. I’ve been very fortunate. I’ve not been abandoned, I’ve been embraced by several very special physicians who have always done everything they can to ensure that my son and I have the best quality of life under the circumstances. They’ve not only cared for my son, they have cared for me. They have supported me, educated me, guided me and, in doing so, have truly made it possible for me to “keep on keeping on”.

I’d like to share one particular encounter with a physician that I will always remember:

Early one morning as I was sitting in the chair next to my son’s bed, the PICU intensivist came over to talk with me. What will always stay with me was this physician’s simple act of getting down so that he was eye level with me, rather than looking down on me, when he spoke. To most, this may seem like a meaningless, trivial gesture. On the contrary, it is indicative of the special person this physician is. He is unassuming, he is respectful and he is kind. This physician remains a part of our team to this day—not as someone who provides hands-on care to my son but someone who is there to listen and offer words of support and encouragement. He is a physician who epitomizes what it means to practice medicine from the heart. Be this kind of physician.

It really is the little things that make all the difference. As someone who must develop long term relationships with physicians because of my son’s chronic condition, I have discovered over the years that, if I have to choose, I’ll choose a physician who cares over one who is the “best”.

Allow kindness and compassion to guide you and, above all else, be a physician who cares.

**********************

Time for me to catch a few hours of sleep. Do you see what time it is!

Saturday, February 09, 2008

Happier Jack


A much happier Jack despite the fact that he is still having trouble keeping his sats above 95% consistently. He's been much sicker than he is right now, so I'm not that worried. But, this is getting really old -- for him and for me. I've spent a good part of the day standing at his bedside suctioning, suctioning and more suctioning. The nebulizer machine is ready to burn out it's been used so much. If I thought the doctor could do anything to speed recovery up, I'd have him seen, but I don't think antibiotics will help. Jack just has a simple cold. Unfortunately, when you are trached, vented and have no cough -- there is little about a simple cold that is simple. Anyway, this too shall pass. Overall, Jack is happy. Overall, mom is tired (what else is new).

Wednesday, February 06, 2008

Grumpy Jack

I'm happy to report that each day Jack is feeling a little better. Saturday and Sunday were tough, but the last two days/nights have been much better. I'm cautiously optimistic that Jack will be back to his baseline very soon. Jack's morning routine always involves a lot of intervention with breathing treatments, the Vest and the Cough Assist to get his lungs cleared out. Usually, our night-time routine only involves a breathing treatment. However, with Jack being sick -- all the equipment comes out and we've got about an hour of "stuff" to do before turning off the lights. As you can tell by the pictures, Jack is not happy about having to put up with his morning routine at night-time too. (mom's not real happy either.)




The Cough Assist machine, the nebulizer machine and the Vest




But, if we can get and keep these numbers throughout the night ...... it's all worth it!


Hopefully, I'll have some pictures of happy Jack to share next time.

Carpe diem!

Sunday, February 03, 2008

Life is Like a Mountain

In my never ending quest to stay (get) in shape and lose those 20 pounds I need to lose before mid-March (which, incidentally, isn't likely to happen), I got up early this morning to hike one of my favorite (and toughest) trails in the valley. We have a mountain that is located in the center of metropolitan Phoenix named Squaw Peak - it's just over one mile straight up. I've been hiking Squaw Peak since I was a kid. As I was hiking this morning, listening to my iPod and reflecting - I was thinking that there is much about hiking the mountain that mirrors life. As people were passing me on the trail, I thought about how when I was younger, it would bother me if I didn't stay ahead of the pack. I was competitive and driven and it was all about finishing first. Today, it's not about being first to the finish line, it's just about finishing. There are points in the hike where my legs are so tired I'm not sure I can keep going. Yet, I remind myself to take it one step at a time. Much like those days I'm tired, frustrated and sad and I don't think I can do this anymore. I've learned to take it one day at a time. There are places along the trail where the path is flat and relenting much like those times when Jack is doing well and life is calm and uneventful. The flat paths and the uneventful days are times to rest, reflect and re-energize so that you can keep on keeping on. Attaining the ultimate goal - the top of the mountain - brings about such a sense of accomplishment and peace. As for the ultimate goal in life - I believe that is yet to come. However, moments of accomplishment and peace are abundant and it's important to recognize and savor those moments atop the mountain we call Life.

Enjoying the moments ..............


Peaceful moments ~ Sunrise on Squaw Peak


The Phoenix Valley


Surrounded by mountains


Super Bowl moments ~
(don't they look excited to be watching the game?!)


Silly moments ~
(yes, that's underwear on his head!)



Jack is doing a little better, but he still has his moments of distress. (Edit: I've been up since 3am suctioning and giving breathing treatments. What a great way to start out the week.) I'm still not sure what's going on, but if it's something viral, he should be making a turn for the better this week. Hoping for a good week . . . one day at a time.