It’s been a weekend of anxiety, frustration and deep sadness. It is so difficult to grasp the idea of another open-heart procedure especially when we look at Max and he seems to be doing so well, who would have imagined that this new monster was lurking inside? What makes it worse is that we still don’t know a whole lot of specifics: the when, the where, and the how. If I’ve learned nothing about myself these last eight years I’ve learned that I deal better with concrete facts and solid action plans, I really suck at the abstract. The abstract of waiting and hoping and praying that everything works out for the best, Max’s best because he deserves nothing less that the absolute best we (his parents and his doctors) can give him.
What we do know so far is outlined (albeit in very medical terms but I hope you can get the picture) in the e-mail I received this morning from our genetics counselor, otherwise known as my life-line, Gretchen:
… we reviewed the images this morning, and my understanding is that even though there is mod-severe leakage which may be subjectively worse, the left ventricular size is only at the upper limit of normal and significantly reduced from the echo in 2008. LV function is also much better than in 2008.
He (our doctor) wanted to switch from Losartan to Avapro, so I'll have our PA give you a call re: this switch. It is still an ARB, just a different med within the class. He also recommended echo in 3-4 months, instead of six.
And, although we have never, ever had doubt that Hopkins was the best place in the world for Max my e-mail exchange with Gretchen continued like this:
Big deep breath (does she know me or what?)--
Re: Medications:--Avapro has a higher dosage schedule as an ARB, so just switching within classes of meds, so that switch should be incredibly well tolerated and not a big deal at all.
In terms of the heart…. we'll make sure there is a good plan and that everyone is on the same page. Please also feel free to call Dr. Dietz on his cell. Today is Passover, so he went home after seeing a patient, but please call if you are anxious! (Where in the world do you find a doctor willing to talk to an emotional wreck of a mother on a major holiday?)
Everyone has Max's best interest at the forefront of their care, so I think you can definitely trust that!!
With support like this how can we go wrong? As Gretchen so astutely pointed out I just need to keep breathing calmly in and out...and read every piece of medical literature on the topic known to man.
Thanks for checking in and keep the good thoughts and prayers coming!
Monday, March 29, 2010
Wednesday, March 24, 2010
Baltimore - Day Three
Today the bombs dropped using our heads as their target. As bombs usually do they have destroyed everything in our paths and their aftermath is devastating.
Max’s cardiac MRI today completely changed yesterday’s optimism about Max’s aortic valve. We have been told that in the last year the valve has deteriorated substantially and now pushes nearly half of its blood flow in the wrong direction. At best we have a year before Max will need open-heart surgery, his third and certainly not his last, to repair or replace the valve depending on what they find when they get in and have a better look at the valve. Either option will do nothing more than buy us time until the next valve surgery and the next and the next…..
Our hearts are heavy and the tears are many. Max is older now and he knows what it means when mom cries, he hasn’t let go of me since we left the surgeon’s office. He’s trying to convince me it will be OK, imagine my eight year old who faces so much is comforting me instead of the other way around.
Max’s cardiac MRI today completely changed yesterday’s optimism about Max’s aortic valve. We have been told that in the last year the valve has deteriorated substantially and now pushes nearly half of its blood flow in the wrong direction. At best we have a year before Max will need open-heart surgery, his third and certainly not his last, to repair or replace the valve depending on what they find when they get in and have a better look at the valve. Either option will do nothing more than buy us time until the next valve surgery and the next and the next…..
Our hearts are heavy and the tears are many. Max is older now and he knows what it means when mom cries, he hasn’t let go of me since we left the surgeon’s office. He’s trying to convince me it will be OK, imagine my eight year old who faces so much is comforting me instead of the other way around.
Tuesday, March 23, 2010
Baltimore - Day Two
Today was the day that never ended. We started our day with an echocardiogram at 8:30 and from there we proceeded through to see Max’s GI and Cardiac Geneticist. Beyond the doctors’ visits Max also endured a slew of blood work (he decided to count the tubes as they were being filled, when he reached 13 he told the young lady to stop because he wasn’t going to have anything left in his veins if she didn’t quit) and other tests. He was a real trooper but it was obvious he was exhausted by the whole thing. This became very evident during the last appointment of the day when he walked into the exam room, laid down on the table and proceeded to fall fast asleep complete with snoring and drooling. I’ve never seen a doctor do an exam on a “dead to the world” eight year old but it was rather entertaining!
Overall everyone was happy with Max’s progress. None of his tests showed significant changes since our last visit in December 2008 which is extraordinary especially as regards his heart valves. I have been holding my breath for so long waiting for bad news regarding the valves that I actually got choked up during the consult when the cardiologist told me there’s “a lot of mileage” left in them. Cardiology thought Max looked so good they actually took him off of one of his heart meds which was a leftover from his open-heart surgery two years ago. In fact, they couldn’t even remember why he was on it! In the very beginning when he was a baby I longed for the day when Max would no longer need medication, now I’m just happy to have one less syringe to line up twice a day. Funny how perspectives change.
We were also able to meet several of the doctors and researchers working on what is now known as “The Max Study”, they are all very enthusiastic about their work and the results they have had to date. We learned that they have found two other children who may prove to have the same gene mutation as Max, they will be seeing one of these children in their clinic in the next few weeks. Max has been so unique for so long it seems strange that there may be other children with similar health issues.
Tomorrow is a very early day with check-in for a cardiac MRI at 6:30 and an appointment with the cardiac surgeon at 10. Hopefully he will be equally pleased with what he sees on the MRI, if it suggests no change in Max’s aorta and/or valves we might be allowed to stop doing yearly MRIs and switch to every other year. Although this may seem trivial I can assure you that the life of a chronically ill child is measured by the number of tests and procedures they must endure. One or two less is miraculous for these kids.
Until tomorrow….
Overall everyone was happy with Max’s progress. None of his tests showed significant changes since our last visit in December 2008 which is extraordinary especially as regards his heart valves. I have been holding my breath for so long waiting for bad news regarding the valves that I actually got choked up during the consult when the cardiologist told me there’s “a lot of mileage” left in them. Cardiology thought Max looked so good they actually took him off of one of his heart meds which was a leftover from his open-heart surgery two years ago. In fact, they couldn’t even remember why he was on it! In the very beginning when he was a baby I longed for the day when Max would no longer need medication, now I’m just happy to have one less syringe to line up twice a day. Funny how perspectives change.
We were also able to meet several of the doctors and researchers working on what is now known as “The Max Study”, they are all very enthusiastic about their work and the results they have had to date. We learned that they have found two other children who may prove to have the same gene mutation as Max, they will be seeing one of these children in their clinic in the next few weeks. Max has been so unique for so long it seems strange that there may be other children with similar health issues.
Tomorrow is a very early day with check-in for a cardiac MRI at 6:30 and an appointment with the cardiac surgeon at 10. Hopefully he will be equally pleased with what he sees on the MRI, if it suggests no change in Max’s aorta and/or valves we might be allowed to stop doing yearly MRIs and switch to every other year. Although this may seem trivial I can assure you that the life of a chronically ill child is measured by the number of tests and procedures they must endure. One or two less is miraculous for these kids.
Until tomorrow….
Monday, March 22, 2010
Baltimore – Day One
Preparations for our yearly pilgrimage to Johns Hopkins were exceptionally painful this year. Up until Friday our status was:
Long story short I spent all of Thursday and Friday with a phone (and sometimes two) attached to my ear. In the end I succeeded in rectifying all logistical issues….or so I thought. The real fun was still about to start.
Round two of the logistical fun and games began bright and early Sunday morning during check-in for our first flight. You know things can only go downhill when the ticket agent tells you that there is no reservation in the system for you. Really? After at least thirty minutes of searching and a long line of other travelers forming behind me (I made NO friends at the American Airlines counter) the agent found our reservations. Problem solved….just in time for the next one. It seems our tickets had not been paid for. Really? I explained that these tickets were issued through a charitable organization that helps children travel for necessary medical treatment. After much searching in many systems, they were able to see that the tickets were paid for but we still had to pay the taxes. I handed over a credit card. Problem solved….just in time for the next one. Evidently although it was a beautiful Phoenix morning and a balmy 75 degrees in Baltimore it was snowing in Dallas. Snow in Texas in March. Really? By this point it must have looked like I was going to cry so now two agents were furiously trying to get us through to Baltimore, each with a computer and phones planted to their ears. It took them another hour but they did it (at this point I REALLY DID NOT have any friends behind me in line), we were on our way! A short fourteen hours and two planes later we found ourselves in the taxi line at BWI airport. Problem solved.
With such a rocky start we are hoping the rest of the week will be uneventful. Max had his first appointment at 8 o’clock this morning with the orthopedic surgeon who felt Max looked really good, obviously a great start to our week. We were also scheduled to see Max’s cardiac surgeon today but he came out to ask us if we could come back later as he had to run to the OR. In another positive twist we decided to meet on Wednesday morning after Max’s echocardiogram and cardiac MRI which means we will be able to review all the findings together as opposed to waiting for a call next week.
Tomorrow is our busy day with appointments from early morning into the evening. So there should be much to report tomorrow night. Fingers crossed that all continues to go well!
- No insurance approval for any of Max’s visits or testing. Or more preciously the computer system could not find any such approval, although United insisted everything was in place.
- The State of Arizona decided to change Max’s Medicaid status to a program known as CRS, a damnation I have been able to avoid these last eight years. Because of this program change I was told that they too would not have approval for services in place in time for Max’s appointments.
- One of Max’s core doctors had an emergency schedule change and would probably not be able to see us this week.
- No hospital lodging was available to us.
Long story short I spent all of Thursday and Friday with a phone (and sometimes two) attached to my ear. In the end I succeeded in rectifying all logistical issues….or so I thought. The real fun was still about to start.
Round two of the logistical fun and games began bright and early Sunday morning during check-in for our first flight. You know things can only go downhill when the ticket agent tells you that there is no reservation in the system for you. Really? After at least thirty minutes of searching and a long line of other travelers forming behind me (I made NO friends at the American Airlines counter) the agent found our reservations. Problem solved….just in time for the next one. It seems our tickets had not been paid for. Really? I explained that these tickets were issued through a charitable organization that helps children travel for necessary medical treatment. After much searching in many systems, they were able to see that the tickets were paid for but we still had to pay the taxes. I handed over a credit card. Problem solved….just in time for the next one. Evidently although it was a beautiful Phoenix morning and a balmy 75 degrees in Baltimore it was snowing in Dallas. Snow in Texas in March. Really? By this point it must have looked like I was going to cry so now two agents were furiously trying to get us through to Baltimore, each with a computer and phones planted to their ears. It took them another hour but they did it (at this point I REALLY DID NOT have any friends behind me in line), we were on our way! A short fourteen hours and two planes later we found ourselves in the taxi line at BWI airport. Problem solved.
With such a rocky start we are hoping the rest of the week will be uneventful. Max had his first appointment at 8 o’clock this morning with the orthopedic surgeon who felt Max looked really good, obviously a great start to our week. We were also scheduled to see Max’s cardiac surgeon today but he came out to ask us if we could come back later as he had to run to the OR. In another positive twist we decided to meet on Wednesday morning after Max’s echocardiogram and cardiac MRI which means we will be able to review all the findings together as opposed to waiting for a call next week.
Tomorrow is our busy day with appointments from early morning into the evening. So there should be much to report tomorrow night. Fingers crossed that all continues to go well!
Friday, March 12, 2010
A Mind is a Terrible Thing to Waste
I have often written about the many trials and tribulations of having a chronically ill child but by far the biggest challenge in my mind is dealing with other people’s impressions of my child. Many people, even adults, have a hard time differentiating a physical challenge from a mental challenge. They are not the same.
My son was born with an imperfect body yet he was born with a gloriously beautiful mind. He cannot run as fast as the other children but in many respects he can (and does) run circles around them. He has a far more mature thought process than the average third grader. He asks incredible questions because he craves knowledge and the ability to understand even complex issues. Although we are often left exacerbated by the sheer number of his questions we ultimately recognize them to be incredibly insightful.
He also has unbelievable problem solving skills, most likely because he has had a lot of problems to solve these last eight years. Although many of his problem solving skills are based on his complete and utter stubbornness it is this stubbornness that has helped him survive when others were certain he would not.
He has without a doubt the most sophisticated sense of humor I have ever seen in a child…and in many cases adults. He has the uncanny ability to find humor where there may not be any, at least not in someone else’s mind. He can laugh at himself, tease his sister, and deliver a play on words all with equal ease and comic timing.
I often think that my son was born an old man. Perhaps it seems that way because he was robbed of a childhood by 30 plus surgeries, a complex genetic syndrome that has no name, and many physical challenges. Physical challenges not mental challenges.
None of this is written to minimize the struggles of others who do have mental challenges, they have their own set of unique and beautiful assets. But rather to express my frustrations when others interact with my son as if he is limited in any other way then physically. I am tired of him brining home class work that is so far beneath him he doesn’t want to do it and thus it gets sent home to be completed. I am tired of a teacher who asks me why I push my son to succeed scholastically. She wants to know what I will do when he reaches his limits and is no longer able to keep up with his peers. I am tired of other parents telling me about their nephew, their cousin, or their friend’s child who was actually able to finish school and get a small manual labor job and be successful on some level. Are these people kidding me? Have they never talked to my son? Have they never really looked at his abilities without biased eyes? I am tired of being the one that has to teach my child because the school system will not and does not. I am his parent, his caregiver, his nurse, and his doctor do I really need to add teacher to the list?
This struggle will continue, perhaps for the entirety of my son’s lifetime and so I worry about what will become of him when I am no longer here to run interference for him. Although something tells me he is capable of running circles around me as well and will run his own interference with intelligence, humor and grace.
My son was born with an imperfect body yet he was born with a gloriously beautiful mind. He cannot run as fast as the other children but in many respects he can (and does) run circles around them. He has a far more mature thought process than the average third grader. He asks incredible questions because he craves knowledge and the ability to understand even complex issues. Although we are often left exacerbated by the sheer number of his questions we ultimately recognize them to be incredibly insightful.
He also has unbelievable problem solving skills, most likely because he has had a lot of problems to solve these last eight years. Although many of his problem solving skills are based on his complete and utter stubbornness it is this stubbornness that has helped him survive when others were certain he would not.
He has without a doubt the most sophisticated sense of humor I have ever seen in a child…and in many cases adults. He has the uncanny ability to find humor where there may not be any, at least not in someone else’s mind. He can laugh at himself, tease his sister, and deliver a play on words all with equal ease and comic timing.
I often think that my son was born an old man. Perhaps it seems that way because he was robbed of a childhood by 30 plus surgeries, a complex genetic syndrome that has no name, and many physical challenges. Physical challenges not mental challenges.
None of this is written to minimize the struggles of others who do have mental challenges, they have their own set of unique and beautiful assets. But rather to express my frustrations when others interact with my son as if he is limited in any other way then physically. I am tired of him brining home class work that is so far beneath him he doesn’t want to do it and thus it gets sent home to be completed. I am tired of a teacher who asks me why I push my son to succeed scholastically. She wants to know what I will do when he reaches his limits and is no longer able to keep up with his peers. I am tired of other parents telling me about their nephew, their cousin, or their friend’s child who was actually able to finish school and get a small manual labor job and be successful on some level. Are these people kidding me? Have they never talked to my son? Have they never really looked at his abilities without biased eyes? I am tired of being the one that has to teach my child because the school system will not and does not. I am his parent, his caregiver, his nurse, and his doctor do I really need to add teacher to the list?
This struggle will continue, perhaps for the entirety of my son’s lifetime and so I worry about what will become of him when I am no longer here to run interference for him. Although something tells me he is capable of running circles around me as well and will run his own interference with intelligence, humor and grace.
Monday, March 1, 2010
Long Time no See or Write
Life has been crazy hectic here lately. The kids have one thing or another every afternoon and weekend, coupled with all of Max's doctor's appointments, therapy sessions, etc. I haven't had time to think let alone write. In the last two weeks I have worked over 150 hours trying to get a project completed at work. You know you haven't been home in a while when your son "skypes" you at work just to "see" you.
Things seem to be winding down just in time to gear up for Baltimore. Last week our travel plans, last appointments, tests, etc. were confirmed, and so Michele, Max, and I will be "taking the show on the road" the week of March 21st. Ellie will stay home with Grandma who is coming from Florida to teenage and dog sit which should prove to be very interesting. Something tells me I'll need to warn my mother of all the things we don't allow Ellie to do, so she'll be prepared when Ellie starts to pull a fast one on her.
Just so we all have proof that I haven't sold Max to the gypsies yet I thought I would share a few pics from Max's first therapeutic riding sessions. He loves the horses and waits anxiously for his Saturday morning trips to the stables.
Things seem to be winding down just in time to gear up for Baltimore. Last week our travel plans, last appointments, tests, etc. were confirmed, and so Michele, Max, and I will be "taking the show on the road" the week of March 21st. Ellie will stay home with Grandma who is coming from Florida to teenage and dog sit which should prove to be very interesting. Something tells me I'll need to warn my mother of all the things we don't allow Ellie to do, so she'll be prepared when Ellie starts to pull a fast one on her.
Just so we all have proof that I haven't sold Max to the gypsies yet I thought I would share a few pics from Max's first therapeutic riding sessions. He loves the horses and waits anxiously for his Saturday morning trips to the stables.
A boy and his horse.
Look Mom no hands!
How many people does it take to keep Max sitting still?
Can't promise anything about still and quiet....
Ladies, let me tell you how we're gonna do this....
Wishing everyone a great week!
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