Home again, more tests, waiting and The Leonardo
We've been home from The Mayo Clinic in Rochester, MN for three weeks.
Three. Whole. Weeks!
Life has fallen back into the routine of running back and forth to Primary Children's Medical Center for follow-up visits and coordination of the continuity of care in Utah. It's beyond amazing how efficient things were there at Mayo after we got settled in. And it's beyond amazing how, with just one doctor (pediatrician) coordinating other specialist visits, how easy it was to get through the system by "waitlisting" for openings getting same-day appointments. Yes, we saw medical students, interns and residents, but boy oh boy, were they the cream of the crop! I can say that I miss the service, the professionalism and the overall compassionate care G received.
Now that we're home, I'm still in shock over how it's been three weeks and some of the offices have not returned my calls to coordinate simple visits as ordered by the Mayo docs. It just "is" what it is. I always wondered why moms posted things like that on FB. Now I know! It's nonsensical. And makes so much sense. Nobody should have to go through three layers of phone trees just to schedule an appointment with a referral. I'll dive into that later. Yesterday I actually spoke with someone who had a note that said, "Mom wants to schedule, a blah, blah, blah apt. and we only do that with a doctor's referral." To which I have to say, "I didn't order anything. The doctor at Mayo did! Did you look at your chart notes?" And then here we go again with the medical records in Utah nightmare... It's all so complicated, but with Mayo it's just not. I will certainly go speak with the legislature when I have a free day. Which I don't.
Let me just tell you what you need to know. G is doing OK. He's stable. He's happy. I can't say great (which I wish I could say, but that wouldn't be telling the truth). And I can't say everything will be "just fine." I can say, in all honesty, that I wish we could have stayed at Mayo longer and gotten all this stuff done. Because some of the visits we really, really need are 12-18 months out. Here in UT. Why? Because there are not enough doctors in the specialty areas we need. Not enough doctors? Nope... Not enough doctors (in Utah). So if you're beyond blessed (which, most of you are) with super-duper healthy kids and can live normal lives. If your child gets really, really sick and he looks smiley and happy, be prepared to wait. A long, long time... Not the case at Mayo! They know when you go there that you mean business. You're getting in and they're getting it DONE. Why isn't it like that everywhere? I've no idea. Why are our insurance claims denied? I've no idea. Because none of that matters. All that matters is that we get this child's pain under control so that he can live the rest of his life.
And speaking of living life, we are doing that now that we're home, with the exception of a few things that chemo ruins for us, like swimming at the public pool. Sunburn happens in less than 10 minutes with sunscreen and a rash guard. Chlorine makes him an atopic mess. So we have to do other things that are fun, like help mom garden before 8 AM and after 7 PM. We watch movies, build lots of Legos, we play the game of LIFE, we are learning how to do small chores, going to the library and checking out new books, we are learning about bugs and are playing with bugs, painting, reading and napping. One thing we're doing is planning future fun outings later on that we can use as rewards. Like the upcoming visit at the Leonardo.
Because we go to Salt Lake City every Tuesday, we drive by the Leo on occasion. Last week we came upon this cool new sign advertising #readyforflight and nothing gets G as excited about life more than flying. Flying to the Mayo Clinic was one of the highlights of his trip. The boy loves planes! I dug into more information and learned that it's a local exhibit. It's not a traveling exhibit like Body Worlds or the Mummies. It will be around for the next few years. How cool is that?
Leonardo da Vinci’s biggest passions during his life was flying. And, since he is the namesake of the museum, they thought it would fit. There will be a full-sized replica of Leonardo da Vinci’s very first man-powered flying machine on display in the exhibit. When Gerard was in preschool, a student teacher showed him images from the sketchbooks and this intrigued him at a young age. These kinds of things take our minds off of the daily grind of medical drama, endless tests and pokes, and let us live in a world that makes us believe in dreams!
If you purchase your tickets now, it's only $5. Later, it will be $13. So go ahead and reserve your place and donate now. C'mon...you know you want to!
And, as always, we are still fundraising for Gerard's medical expenses. We have friends hosting a yard sale this Saturday. If you're interested in dropping off items or in attending, here's the details.
Three. Whole. Weeks!
Life has fallen back into the routine of running back and forth to Primary Children's Medical Center for follow-up visits and coordination of the continuity of care in Utah. It's beyond amazing how efficient things were there at Mayo after we got settled in. And it's beyond amazing how, with just one doctor (pediatrician) coordinating other specialist visits, how easy it was to get through the system by "waitlisting" for openings getting same-day appointments. Yes, we saw medical students, interns and residents, but boy oh boy, were they the cream of the crop! I can say that I miss the service, the professionalism and the overall compassionate care G received.
Now that we're home, I'm still in shock over how it's been three weeks and some of the offices have not returned my calls to coordinate simple visits as ordered by the Mayo docs. It just "is" what it is. I always wondered why moms posted things like that on FB. Now I know! It's nonsensical. And makes so much sense. Nobody should have to go through three layers of phone trees just to schedule an appointment with a referral. I'll dive into that later. Yesterday I actually spoke with someone who had a note that said, "Mom wants to schedule, a blah, blah, blah apt. and we only do that with a doctor's referral." To which I have to say, "I didn't order anything. The doctor at Mayo did! Did you look at your chart notes?" And then here we go again with the medical records in Utah nightmare... It's all so complicated, but with Mayo it's just not. I will certainly go speak with the legislature when I have a free day. Which I don't.
Let me just tell you what you need to know. G is doing OK. He's stable. He's happy. I can't say great (which I wish I could say, but that wouldn't be telling the truth). And I can't say everything will be "just fine." I can say, in all honesty, that I wish we could have stayed at Mayo longer and gotten all this stuff done. Because some of the visits we really, really need are 12-18 months out. Here in UT. Why? Because there are not enough doctors in the specialty areas we need. Not enough doctors? Nope... Not enough doctors (in Utah). So if you're beyond blessed (which, most of you are) with super-duper healthy kids and can live normal lives. If your child gets really, really sick and he looks smiley and happy, be prepared to wait. A long, long time... Not the case at Mayo! They know when you go there that you mean business. You're getting in and they're getting it DONE. Why isn't it like that everywhere? I've no idea. Why are our insurance claims denied? I've no idea. Because none of that matters. All that matters is that we get this child's pain under control so that he can live the rest of his life.
And speaking of living life, we are doing that now that we're home, with the exception of a few things that chemo ruins for us, like swimming at the public pool. Sunburn happens in less than 10 minutes with sunscreen and a rash guard. Chlorine makes him an atopic mess. So we have to do other things that are fun, like help mom garden before 8 AM and after 7 PM. We watch movies, build lots of Legos, we play the game of LIFE, we are learning how to do small chores, going to the library and checking out new books, we are learning about bugs and are playing with bugs, painting, reading and napping. One thing we're doing is planning future fun outings later on that we can use as rewards. Like the upcoming visit at the Leonardo.
Because we go to Salt Lake City every Tuesday, we drive by the Leo on occasion. Last week we came upon this cool new sign advertising #readyforflight and nothing gets G as excited about life more than flying. Flying to the Mayo Clinic was one of the highlights of his trip. The boy loves planes! I dug into more information and learned that it's a local exhibit. It's not a traveling exhibit like Body Worlds or the Mummies. It will be around for the next few years. How cool is that?
Leonardo da Vinci’s biggest passions during his life was flying. And, since he is the namesake of the museum, they thought it would fit. There will be a full-sized replica of Leonardo da Vinci’s very first man-powered flying machine on display in the exhibit. When Gerard was in preschool, a student teacher showed him images from the sketchbooks and this intrigued him at a young age. These kinds of things take our minds off of the daily grind of medical drama, endless tests and pokes, and let us live in a world that makes us believe in dreams!
The crowning jewel of the exhibit is a giant, C-131 aircraft. The aircraft is so large that to get it into the museum, they actually had to take off part of the wall of the building. Additionally, the wingspan is so big that it only clears the walls of the exhibit by six inches on either side. What’s better is that this isn’t just an airplane you can look at it. You can get up on the wings of the airplane and run from one side to the other. You can get in the cockpit and play with all the buttons, levers and gadgets. You can slide out the back of the airplane on our giant slide. You can even get in and take a look at the fuselage and how things are put together and learn how airplanes are built and work.
Flying! The plane was actually flown on both commercial and military flights. It flew military dignitaries just after WWII and has spent the last 50 years in a boneyard in Arizona before they bought it and restored it. The plane has 2 million rivets in it, welded in by hand.
In addition to the C-131, there will be a Russian MiG-21 Fighter Jet that will be part of the exhibit.
The exhibit also has interactives and activities that will teach visitors about three different types of flight. Buoyant flight (hot air balloons), Aerodynamic flight (airplanes) and Ballistic flight (missiles and rockets). There will also be a section on animal flight and the history of flight including
Leonardo da Vinci’s flying machine and a bi-plane that you can break apart and put back together.
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There will also be three hyper-realistic flight simulators provided by Rockwell Collins so you can get in and fly all sorts of missions, planes and other things to get your blood pumping.
More information is featured on the Leo blog here. Sounds like so much fun!
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| · There are a few additional surprises I don’t want to spoil yet, but suffice it to say, it will be amazing. |
The Leonardo is located at:
209 East 500 South, Salt Lake City, Utah 84111 just South of Library Square. If you've never been there, it's easy to access and such a fun place for kids of all ages to explore.
And, as always, we are still fundraising for Gerard's medical expenses. We have friends hosting a yard sale this Saturday. If you're interested in dropping off items or in attending, here's the details.
Our Go Fund Me account that our friends helped us with is getting closer to our goal. Our purpose in getting help was to be able to keep our house. Yes, we have insurance, and no, it doesn't come close to covering enough of what we need now, nor in the future. If you've taken time off from work for a sick child for one day, imagine doing it for an entire school year. That's where we were last year. We are managing six autoimmune diseases. Diseases we can manage, but from which there is no cure. Thank you to everyone who has helped us, and we are beyond grateful to have gotten where we are today. Starting in October, we will have a support group for parents in Ogden who have children suffering from chronic autoimmune diseases and pain. It will be a resource group - a group to help lift us all up in our time of great stress. Because we all need that. And we all need to be able to stop and have "just an hour" once a month to help us along the way. Nothing is as isolating as living with a sick child. Thank you. Infinite love and gratitude. Please share the link below, if you will. No amount is too small. Trust me, every little bit helps in a big, big way.
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