Hope is the thing that is willing to take a chance on the future. Hope is the capacity to see something on the horizon that we are willing to move toward. If our hope gets us from today to tomorrow, and in that new day we are ready or able to deal with something we thought we couldn’t face, then hope has done its job. There is a worse thing than false hope. It is no hope.
Since the weather has been so great, I've tried to get Jack out as much as possible this week. We live within walking distance from almost any store or restaurant you can think of. Since I was home earlier than usual on Thursday - Mary, Eric, Jack and I walked to Applebees for dinner.
Friday night, my friends from Denver -- Whitney, Steve and their boys, Aiden and Alex were in town and stopped by for a visit. Alex (the little guy on your far right) used to have a trach and Whitney and I met on the Tracheostomy.com message board. Whitney and I usually see each other at least once a year, but this was the first time I'd met the boys. They were both very cute! Although, in the picture, Aiden isn't so sure about being in Jack's bed.
Michelle and her daughter Sara. Michelle has been cutting Jack's hair since we moved home almost six year ago. It's been a Godsend because she comes to the house, which has made life so much easier on me. Unfortunately for us, but good for Michelle, her husband recently got a job in Washington DC, so Michelle will be moving away. She did give me the name of her good friend who said she would come out to the house to cut Jack's hair. Thanks Michelle for taking such good care of Jack these last six years -- we'll miss you!
We went out for a walk this evening and had a little photo shoot by this great water feature in our neighborhood. (more pictures to come later this week ... I did a photo shoot of Eric for his 6th birthday).
Mr. Attitude celebrates his 6th birthday next week. He's so excited because finally "his needs" will be met. I'm guessing he'll be okay with me being his mom long enough to go shopping for presents.
Have a great day and remember .... "smile and the world smiles with you".
I wish there was something to update on. We had a perfectly boring and pleasant weekend. Jack is feeling great - I can always tell when he is feeling good because his heart rate is in the 70s when he is awake, which means he is feeling really relaxed. When he is sick or not feeling his best, his heart rate is above 100 when he is awake. We had a beautiful weekend weather-wise. The kids and I went for a long walk and then we all went out to dinner on Saturday night. We are experiencing what I call our "why we live here weather". My friend sent me a picture of her Saturday morning in the Boston area:
On the other hand, we enjoyed warm weather and blue skies.
As I've shared in the past, sometimes I feel like blogging on our every day, mundane life is silly and that maybe I should end this whole blogging thing. But today, I was reminded why I do this. I received two emails from moms who live in opposite ends of the country. What these very special moms shared with me is that when they read Jack's blog, they feel like I am writing their story and that it helps them to know that they are not alone. It is both humbling and deeply moving to me that so many people can relate to my words. Before I had Jack, I would never have guessed that I could write in a way that would catch people's interest. Afterall, I was a Biology major in college and I spent my days studying the Krebs cycle and chemical equations. Who knew I could write?
I don't share this to pat myself on the back, but to say "thank you" to all who read, who care, who leave comments of encouragement and to those who share their own stories with me. To quote Helen Keller .... "Alone we can do so little; together we can do so much". I am thankful for the opportunity to make a small difference ... together ... with all of you.
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.
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:
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.
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!
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!
Friday Food for Thought
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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.
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.
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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!
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).
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.)
In my never ending quest to stay (get) in shape, 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 - it's just over one mile straight up. I've been hiking this mountain since I was a kid. As I was hiking this morning, listening to my music 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 ..............
Jack is such a mystery. He's had such a miserable week and I can't really tell what is wrong with him. His oxygen sats are fine, but his heart rate is elevated and "miserable" is written all over his face. It's difficult enough having a medically fragile kid, but having a sick medically fragile kid who can't tell you where it hurts is just so hard. I can't imagine not being able to communicate my aches, pains, needs, etc. I suppose Jack communicates them through his body language, but we are just guessing at what might be wrong. Jack probably just wants to yell at us and tell us that we are guessing all wrong - if only he could. You remember how stressful having a newborn baby is because they can't tell you why they are crying? That same sense of helplessness has remained with me for the last nine years when it comes to trying to figure out Jack. Hopefully, he'll start feeling better soon.
TGTomorrowIF! I'm so tired. I've slept through my alarm every day this week .... which means everyone else overslept too (since I'm their alarm clock). It's been a week of morning madness.
Interesting bit of news ... when the person from Mark's HR department asked their UHC rep where the exclusion they came up with is found, the response was, in effect -- we can't share that information with you. What the hell!? Why does UHC think it's "confidential" information they don't have to share with their own customer? Especially in light of the fact that the second level appeal is with Mark's employer. You'd think they would be allowed to know the basis of the denial they will be asked to overturn. Mark's HR person told him that we just need to go ahead and appeal. I'm really glad I have an attorney involved (one who knows this area of the law inside and out). The appeal hasn't been filed yet, but, hopefully soon (before I have to get pushy).
I heard back from Jack's ophthalmologist: "if you think he is using the bifocal, then I would continue it, particularly if he is looking at things both near and distant. In some children who spend the vast majority of their time looking only at things within arm's reach, we use single lenses adjusted to focus at near. To make a decision it is important to know what the patient does in real life."
Real life -- that's the one little detail the ophthalmologist here didn't take any time to find out about. Looks like we'll be making that trip to STL. *Sigh*
One of my favorite books is “Kitchen Table Wisdom, Stories that Heal” by Rachel Naomi Remen, M.D. It's one of those books you can pick up and read a chapter or two at a time, in no particular order, and over and over again. As you have probably figured out by now, I'm not one to read novels or fiction -- I like the real stuff .... information I can apply to my own life. You'd think I'd like escape every once in awhile into a world of make believe. But, I'm too much of a realist. In the preface of her book, Dr. Remen describes how, when setting out to write the book, she quickly discovered that she is an author and not a writer. She says writers are people who are born to write and an author is someone who was born to do something else and then writes a book about it. I'd love to write a book (or two) some day. Although, I'm not sure which category I fall into. But for my experiences with Jack, I doubt I'd have much to write about. So, I guess that makes me an author? Regardless, maybe ... someday ... I'll write that book.
We had a rainy and relaxing weekend. A friend of mine and I took Eric to the Arizona Science Center - a place I had never been to before. It was nice to be able to spend some time with just Eric, as that doesn't happen too often. He will tell you that he had a great time up until the end. When we went to the gift shop for the all important souvenir -- it was closed. He was deflated. It's so tough being a kid.
And if the choice lines up so that it supports truth, health, happiness, wisdom and love, it’s the right choice.
Life Lessons for Loving the Way You Live
**I would add that for someone like myself, who also strives to make faith based choices - if a choice is in alignment with truth and love ... I'd like to believe that it's also in alignment with my faith and, therefore, the right choice in that regard as well. I'm no where close to achieving "spiritual maturity" as defined by this book -- but, I like the concept.
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Have a great weekend!
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Yes, there are a few doctors in this City who I like and whose care I am comfortable with:
*Neurologist (he trained under Jack's STL neurologist at Washington University and she referred us to him)
*Orthopaedist (the reason we had Jack's spinal fusion surgery in STL was not because I didn't trust our Phoenix ortho, but because I'm comfortable with St. Louis Children's Hospital and I'm not comfortable with any of the "Children's" hospitals in Phx)
*Pulmonologist (in my book, there is no one who is as good as Jack's former STL pulmonologist, but our Phx pulmonologist "gets it" and he is wonderful with Jack)
*Pediatrician
*Endocrinologist -- didn't have one in STL, so no one to compare him to
Not comfortable with:
*ENT (Jack doesn't have a complicated airway, but he has had airway complications related to his anatomy (right aortic arch) and the ENT here doesn't express the same concern or interest that our ENT in STL does)
*Ophthalmologist (see previous post for the story there)
*Children's hospitals (The limited experience I've had with the Children's hospitals here in Phx has not been positive. There is no comparison to St. Louis Children's - which is ranked as one of the top 10 Children's Hospitals in the country)
*Biggest issue is no coordination of care. I have to run all over the valley to see different doctors who have privileges at different hospitals, who don't talk to each other about Jack, and who won't coordinate procedures. At SLCH, I get everthing done in one building, with doctors who share information about Jack and who always work together to perform their respective procedures or surgeries on the same day so Jack is under anesthesia only once.
I haven't heard back from Jack's STL ophthalmologist yet, but today I scheduled appointments with all of Jack's STL docs for October. I'm sick to my stomach just thinking about making the trip from Phx to STL. It's not a given we are going back, but I want to give myself the option. We couldn't get in with Jack's neurologist -- she's already booked through November, but I emailed her and she usually gives her scheduler permission to fit us in.
Yes, my expectations are high when it comes to doctors and what I need from them, but it's only because I've experienced some of the best in STL. I just can't force myself to settle for less than I'm comfortable with. Sure, it would be so much easier to not have to travel 3000 miles round trip to see doctors, but I've never taken the "easy" road, so why start now. Fortunately, I have a husband who accommodates my craziness and who is always willing to make the drive to St. Louis. It's not something I could do on my own.
Keep in mind that Jack is a very medically involved kid. In all fairness, I'm sure the doctors/hospitals in Phoenix are fine for the average kid who only needs a specialist and/or hospital on rare occasion.
That's my story and I'm stickin' to it!
Jack and Eric saw the new ophthalmologist on Friday and my feeling walking out of his office was one of disappointment. Several comments he made throughout our appointment didn't sit well with me. Basically, the guy was arrogant and rushed. I can put up with arrogance, but I won't put up with a doctor who doesn't want to spend the time with Jack that he needs (or, more accurately, one who feels put out because Jack takes more time than his average patient). Without asking a single question about Jack's daily life, such as where he spends most of his time and what he looks at (distance wise) - he just made the assumption that Jack doesn't use his bifocals and therefore, wants to get rid of them. Notwithstanding the fact that Jack has had bifocals since he was 2 years old! Jack has artificial lenses because he had congenital cataracts, so he has one set distance he can see with his lenses (unlike normal lenses which can adjust) -- therefore, it's important to find the distance Jack's uses the most (ie, from his bed to his TV) and then make corrections with glasses to accommodate distance and close-up. He made the comment that he's seen enough kids with bifocals to know that Jack doesn't need them. I had to bite my tongue not to tell him that our ophthalmologist in St. Louis has probably seen as many or more patients like Jack and I think he knows what he is doing too. On top of his attitude he had no bedside manner. Why go into pediatrics if you are going to act grim and serious with your patients. Maybe it's just Jack that brings that out in doctors, but it irritates me that I have such a difficult time finding pediatric specialists in this City who will talk to Jack like he is a person. I'm going to email Jack's STL ophthalmologist and get his take on the changes this guy wants to make. He didn't make any big changes to Eric's prescription, so he might be okay to follow Eric, I'm just not sure about Jack.
In other news, I received an email letting me know that one of our local news stations wants to do a story on Jack's room in March. I told the Room for Joy people they are really forcing me out of my comfort zone. My medium of choice is the written word, not the spoken word. Ad libbing is not one of my strong points (and the reason I'm not a trial lawyer). They say television adds 10 pounds to a person, so I'm in trouble! I have 2 months to lose at least 20 pounds. I guess the chocolate croissant and latte I had this morning will be my last for a while. Bummer.
This weekend was another weekend of Irish dance. Mary has moved up a level and her competition is much tougher. She didn't place in her individual dances, but she won first in her team dance (Ceile). I mentioned to her that it might help if she practiced on occasion (she, of course, didn't like hearing that).
A few pics from this weekend:
Eric and his friend Orla (who competed in her first Feis this weekend)~
Jack hanging out on the couch watching football ~
Mary showing off her new solo dress ~
It seems that the exclusion UHC quoted in their denial letter doesn't exist in Mark's employer's plan. Imagine that ... an insurance company making stuff up! We don't even find an "exclusion" section in the plan summary. We find a "what's not covered" section and devices and computers to assist in communication are NOT found anywhere under "what's not covered". The attorney who is helping me said it wouldn't be the first time that UHC has cited to a policy exclusion that isn't part of the plan at hand. Mark asked his HR department if they could find the language quoted by UHC in any of their documentation - we haven't heard back from them yet. It's just a bunch of b.s. and now I'm angry. I'm angry about the amount of time and lost billable hours I've devoted to resolving a bogus issue created by an insurance company. They should pay me for the time I've spent on this at my hourly rate. Something like this should be able to resolved by a simple phone call and shouldn't require a full blown appeal. Regardless, I'm just going to let the attorney handle the appeal. UHC and Mark's employer could both stand to squirm a little.
In Eric news, I talked with his teacher today and she said he is a PERFECT fit. He is not having any trouble keeping up with the work and there are NO behavior issues. She said he does like to talk, but she has a whole classroom of kids who like to talk. Bravo for good news!
That's the latest and the greatest from the Schrooten Ranch.
Have a great day!
Yep, our insurance company, who I affectionately refer to as United HealthcareLESS -- denied Jack's eye-gaze communication device (technically called a SGD - speech generating device). UHC claims that "devices and computers to assist in communication and speech" are excluded from our plan. Apparently, either UHC or Mark's employer wrote it out of their plan sometime between 2003 - when Jack's first communication device WAS covered -- and now. I think I've figured out how things work. Each year the insurance company and the employer sit down and look at those procedures and/or equipment that were covered and which cost them a lot of money and then, they proceed to write them out of their plan.
Not that long ago, receiving news that something this important for Jack is not covered by insurance would have made me so angry I couldn't see straight. But, I've learned over the years that "que sera, sera" and, therefore, there is no sense in getting so worked up that I can't function. I really believe, if it's meant to be, it will happen. Besides, being angry just saps too much energy and my reserve is depleted.
While I'm not angry, I'm not throwing in the towel either. We have a couple of options. First, we move forward with requesting that our Department of Developmental Disabilities (DDD) pay for the device. They should cover it (I hesitate to say that they will cover it). But, as I mentioned before, if DDD pays for it, they own the device, we don't. Not my first choice, but livable. While we get ball rolling with DDD, I will be appealing UHC's decision. A fellow sorority sister of mine gave me the name of an attorney whose entire job is appealing denials of SGDs by insurance companies. The best part, he doesn't charge for his services because he is paid by the SGD industry. He and I already exchanged several emails and information today and boy, does this guy know his stuff! I'm confident that, in the end, UHC will be paying for Jack's eye-gaze communication device. Hopefully, DDD will approve it so we can get it right away, but when we win our appeal, DDD will get reimbursed and we will own the device.
Another day .... another battle. However, the difference today compared to a couple of years ago is that today I'm more informed, I'm more patient and I don't take it personal. Jack will get what he needs, not necessarily my way or in my time, but he will get it.
(I'm sounding so in control of my emotions, I'm scaring myself! Don't worry, I can still get angry when I really need to.)
Onward we march!
Jack had his second radiation treatment on Wednesday. Half the dose, half the time. He tolerated it great, but was "yelling" at me and giving me the pouty lip when it was over. I guess the novelty of being in a giant tube that is making a lot of noise (not to mention shooting potent beams of radiation at you) wore off. The radiation doc said to give it a few months and if he's still producing a lot of saliva, we can try another treatment. I think I'm done radiating my kid. Whatever we get from this treatment, I've resigned myself to live with.
After we finished that appointment, we made a stop at the ortho's office for a foot x-ray. There were a couple times last weekend when I touched Jack's foot that he started crying (big huge alligator tears) and with his bone issues, I decided we should probably make sure he didn't have a fracture. The good news is the ortho couldn't see a fracture. The bad news is, the ortho couldn't see much of a bone at all because Jack's bones are so osteopenic that you can see almost no white on x-ray. *Sigh* It's really scary to see Jack's x-rays. Makes you afraid to touch him.
On the Eric front .... so far, so good with the new school. I was worried when I saw a red card and a green card in Eric's backpack as I thought, please .... no more red light, green light crap. Thankfully, the cards have nothing to do with behavior, they are to let the teacher know if Eric is ready to be tested on his spelling words. The biggest difference with this new school is lots of homework. Mark made the comment tonight that the math was way beyond a Kindergartener. I reminded him that this was a gifted program. Let the fun begin!
Happy Friday and have a great weekend.
The boys watching TV together this evening ~
I have to laugh when I think about what I define as boring. What I consider boring, ordinary and mundane today, had me in a tailspin not too many years ago:
“What do you mean I have to take this plastic tube and put it in that hole in his neck!”
“You mean I have to suck the snot out of his lungs and collect it in that container!”
“What the hell am I supposed to do when his oxygen saturations plummet to 80 and he’s turning a lovely shade of gray?”
“How am I supposed to get that machine from point A to point B?”
“He’s not legally blind, he can see!”
“You’re not turning up those ventilator settings are you?”
“Help, the g-tube fell out and stuff is gushing out of that hole in his stomach and going everywhere!”
“Are you kidding me?”
Today I can change out a trach; replace a Mic-Key button; suction snot ‘til the cows come home (and empty that disgusting container); trouble shoot a ventilator; bag my kid and hook up the oxygen with my eyes closed; load Jack and his portable PICU in the car in 20 minutes tops and get anywhere we need to go (including cross country); and recognize that those amazing eyes see more than I ever will. No kidding.
It just goes to prove that we humans can adapt to almost anything as long as we have consistency. What created chaos in my life just a few years ago has become my normal. God knows I fought making this my normal for a long time and part of me hates to acknowledge that this is my status quo. But, when you are rounding the corner on ten years of this way of life … you don’t have to hit me over the head with a ventilator for me to get that … this … is … IT.
I’m okay with the status quo because I really don’t need any added chaos to take IT up to the next level. I’m content right here … lying next to Jack … holding his hand … and listening to Raffi (and that darn ventilator!)
It seems when things are going well, the words don’t come. It’s in times of sadness, pain or anger that the words flow so freely from my heart. These days, my heart is content and quiet. Quiet is good … it’s also boring. It’s times like this, that I question this whole blogging thing. Sure, I can always write about the mundane details of our day to day lives, but really, how interesting is that? I usually do my best thinking when I’m driving to and from work with my iPod blasting my favorite music through the car speakers. Incidentally, my music of choice these days is Chris Tomlin – his version of Amazing Grace (My Chains Are Gone) is beautiful and intensely moving. My drive time is usually when I mentally draft most of my “blog thoughts”. Yet, even with the spiritual music of Chris Tomlin to reflect upon, nothing is happening upstairs (at least in terms of creative thoughts). I’m certainly not looking for trouble just to come up with something profound to say. Nor am I sure what the point of this post is. I guess I feel a responsibility to have something to offer to those of you who come here to read. Then again, maybe a simple Jack update, a picture or two and an occasional video clip of my silly Eric is all anyone shows up for. I don’t know … you tell me.
Because I’ve nothing profound to offer, I’ll share a few mundane details of everyday life.
It’s another busy month of appointments. Jack has his second radiation treatment to his salivary glands next week. I’m really nervous about doing it, but the consensus is that the first treatment didn’t help at all. My fear is that the second treatment will go too far and Jack won’t have any saliva production – which is not a good thing either. The decisions are just never easy. Jack and Eric have an appointment with a new ophthalmologist in two weeks. This will be the third ophthalmologist I’ve seen here in Arizona. The previous ones haven’t been bad, they just haven’t been of the same caliber we get at St. Louis Children’s Hospital. Jack really needs to be followed closely because of his congenital cataracts and subsequent lens implants and since we didn’t go back to SLCH last summer, I thought I’d give this new guy a try. I haven’t decided yet if we are going back to SLCH this year. I’d rather not, but I also want to keep the St. Louis docs in the loop in case a serious issue comes up with Jack, as they are the only docs I trust implicitly. We also see the orthotist this month for adjustments to Jack’s DAFOs and to see about getting different hand splits. In non-medical news, the kids start back to school next Tuesday and Eric will be starting at the new school, with a new teacher. Soccer starts up again this month for Eric and Mary has an Irish dance competition one of the weekends this month (thankfully, it's here in town).
That's our month in a nutshell. Now, it doesn’t get any more exciting than that, eh?!
Have a wonderful weekend.
Thank you for riding along with us on our journey.
