"Sometimes, real superheroes live in the hearts of small children fighting big battles." Sometimes the doctors and nurses are the best first officers for these warriors in this thing called LIFE.
Well this post is going to be for those doctors and nurses who have gone above and beyond their "call of duty" for not just my kids but many kids who have been in the medical world beyond common procedures like ear tubes and well child checkups. Sorry I rabbit trail in here so bear with me. Come join me down memory lane....
No coincidence I found these side by side Friday...
Our first experience with this journey was my daughter's first pediatrician thinking she might have Apert Syndrome. We didn't have internet nor cable at home at that time (rabbit ears at best) and I had to go to the library to do all of my research. May 2007 was when it was brought up as a maybe. June 2007 was a "for sure something is going on." and a month later was our first trip to Dallas Texas. (Yes we have driven past this exit too.)
Oh lordy, I had no idea what I was in for. That traffic going southbound on 75 starting in Plano I thought I was going to have a stroke!!! Yeah, it was only about 11am too. We decided to do that trip there and back in one day. We lived to regret that. Dr. Fearon though was world renowned and since Arkansas had no craniofacial at the time, Dallas was our best option. He confirmed the Bicoronal Craniosynostosis but said it was not Apert but more like Muenke or Crouzon, two other syndromes.
Talk about being thrown into Holland and into a world of learning this and that!
More like I started navigating this journey myself! Finding website online with support boards was huge. This was before Facebook, but not too long before it. I learned a lot!
Then came more learning with going back to Dallas a few months after our first trip. It was time for the first MRI. More to learn! First time my daughter was sedated.... That was hard...... Yet today it's "routine" for either kid to be sedated...... Next came preparing for her first surgery.
Procrit, blood checks, check-ups, scheduling, arranging, and so much more..... The pediatrician we had at the time, him and his main nurse we got to know pretty well in those weeks leading up.
The next time we went to Dallas we got the Ronald McDonald House for the first time. Though it wasn't the same house I have posted about on here before, it was the first house that was half that size and had community bathrooms and other differences. Yet the feelings were all the same. All of us were there, we didn't wish we were there yet were thankful for the House.
The night before the surgery I was up all night sick. It was nerves and I knew that but it was NO fun..... I had only met her neurosurgeon, Dr. Swift that morning.
Surgery day came, we kept busy and then recovery began. That was February 2008. Hospital life became a reality, even if for three days, two nights. This was technically in the E building as the actual wing of Medical City Children's had not been done yet. Honestly I was so wrapped into what was going on that I don't even remember what my view outside was. I didn't start appreciating that till later.
Time went by, more trips went by. We had to change pediatricians because the one we started with was moving on to other things. My daughter was two, almost three I think when we switched. I had already lost track by then how many trips and talks we had done with Dallas. Little did I know...
Headaches started up more than what I felt "comfortable" with by the time she was almost four. Back to Medical City for a routine week of appointments and an MRI. Little did I know it would be for almost a month, thanks to ICP testing. She got her favorite PICU nurse for three of her four days whom she STILL talks about that stay also. "Hey Scott!" "What??" *ROAR* was the game between the two of them. Soon after the *ROAR* also went to the neurosurgeon she had all these years. Dynamics within me changed that trip. I can't explain it but it's like my bond with Dallas grew in that 24 days. As nuts as it sounds, when we finally went home, with a new bike in tow thanks to her learning how to ride while there, I missed it. I mean, I did but didn't. For many, most would think I was nuts. Yet some get it.
Then came more learning with going back to Dallas a few months after our first trip. It was time for the first MRI. More to learn! First time my daughter was sedated.... That was hard...... Yet today it's "routine" for either kid to be sedated...... Next came preparing for her first surgery.
Procrit, blood checks, check-ups, scheduling, arranging, and so much more..... The pediatrician we had at the time, him and his main nurse we got to know pretty well in those weeks leading up.
The next time we went to Dallas we got the Ronald McDonald House for the first time. Though it wasn't the same house I have posted about on here before, it was the first house that was half that size and had community bathrooms and other differences. Yet the feelings were all the same. All of us were there, we didn't wish we were there yet were thankful for the House.
The night before the surgery I was up all night sick. It was nerves and I knew that but it was NO fun..... I had only met her neurosurgeon, Dr. Swift that morning.
Surgery day came, we kept busy and then recovery began. That was February 2008. Hospital life became a reality, even if for three days, two nights. This was technically in the E building as the actual wing of Medical City Children's had not been done yet. Honestly I was so wrapped into what was going on that I don't even remember what my view outside was. I didn't start appreciating that till later.
Time went by, more trips went by. We had to change pediatricians because the one we started with was moving on to other things. My daughter was two, almost three I think when we switched. I had already lost track by then how many trips and talks we had done with Dallas. Little did I know...
Headaches started up more than what I felt "comfortable" with by the time she was almost four. Back to Medical City for a routine week of appointments and an MRI. Little did I know it would be for almost a month, thanks to ICP testing. She got her favorite PICU nurse for three of her four days whom she STILL talks about that stay also. "Hey Scott!" "What??" *ROAR* was the game between the two of them. Soon after the *ROAR* also went to the neurosurgeon she had all these years. Dynamics within me changed that trip. I can't explain it but it's like my bond with Dallas grew in that 24 days. As nuts as it sounds, when we finally went home, with a new bike in tow thanks to her learning how to ride while there, I missed it. I mean, I did but didn't. For many, most would think I was nuts. Yet some get it.
This was the Medical City I have known since. They had the new stuff done by the time we came for our 2011 appointments. I think it was done sooner than that but I clearly remember it by 2011. You see, after years of doing trips, and fairly often, details start to blend together and it gets hard to remember when what checkup was done when. What really stood out to me though at Medical City Children's was all the colorful lighting that reflected. Neon light colors that changed to different colors of the rainbow, the bathrooms and even outside where you came in did that. I only wish now I got more pictures of it all...
We started with Arkansas Children's also soon after our 2011 trip to get established with neurology there.
Neuroscience has gotten to know us well over the years. We walk back there each appointment and start cutting up with the nurses and small chatter every time....
I never saw Children's like this till our first sleep study with our son. It's different!
Before this, I had always seen it like how I showed earlier.
Yet we were fortunate that we were still able to have our team in Dallas. Some of the best moments on the travels were at the rest stop just as you got into Texas going south on 75.... They knew us so well in there, we would walk in and they would ask if it was follow-ups or surgeries, knowing why we were going.
That famous Texas star was the best spot that the kids loved. Over time they filled in the flowers with brick but it was always climbed on, even by my son as he got older, and he was almost three the last time he went. Though my son also had a knack of getting people wrapped around his fingers. Even with the local nurses. (Unless you are one of those that had to do labs on him.... Or a cold sthesoscope lol)
Yet my daughter had a way with people too, especially those in Dallas. (THe "Mr. Serious" neurosurgeon I had known for all those years I learned also had a good sense of humor. As long as scissors weren't threatened to his long hair. (Livy!)
I'll forever be indebted to the doctors and nurses we have had those years in Texas.... And to all of those who made this journey fun too, fellow families and new people we met over the years. And in reality, we have had to only "fire" two doctors in nearly 10 1/2 years so I would say we are doing quite well in that front so far.... I can't tell you the names of everyone we had but I do know some really have stood out over the years. Maria in outpatient at Medical City along with Norman. Honestly, we have never had one bad nurse at Medical City and only had one hiccup with one part of Children's Medical Center. Yet even when my son had his last surgery in Dallas the day before my birthday, the next morning a nurse brought me a Mountain Dew knowing it was my birthday and seeing that I had one the day he was admitted to PICU.
Not a lot do that.....
The Ronald McDonald House to me the best spot to sit though was on the enclosed back porch with the huge rocking chairs. Plenty of phone calls were done from those chairs of updates, good and bad, on where our journey was and where it was going.
I sure am going to miss these views though......
My children will miss this room the most.... (Old pic, MUCH more got added in after this. Dress up fire chief outfits (REAL stuff) clothes closet FULL of play clothes and so much more....
Yet we were fortunate that we were still able to have our team in Dallas. Some of the best moments on the travels were at the rest stop just as you got into Texas going south on 75.... They knew us so well in there, we would walk in and they would ask if it was follow-ups or surgeries, knowing why we were going.
Yet my daughter had a way with people too, especially those in Dallas. (THe "Mr. Serious" neurosurgeon I had known for all those years I learned also had a good sense of humor. As long as scissors weren't threatened to his long hair. (Livy!)
I'll forever be indebted to the doctors and nurses we have had those years in Texas.... And to all of those who made this journey fun too, fellow families and new people we met over the years. And in reality, we have had to only "fire" two doctors in nearly 10 1/2 years so I would say we are doing quite well in that front so far.... I can't tell you the names of everyone we had but I do know some really have stood out over the years. Maria in outpatient at Medical City along with Norman. Honestly, we have never had one bad nurse at Medical City and only had one hiccup with one part of Children's Medical Center. Yet even when my son had his last surgery in Dallas the day before my birthday, the next morning a nurse brought me a Mountain Dew knowing it was my birthday and seeing that I had one the day he was admitted to PICU.
Not a lot do that.....
The Ronald McDonald House to me the best spot to sit though was on the enclosed back porch with the huge rocking chairs. Plenty of phone calls were done from those chairs of updates, good and bad, on where our journey was and where it was going.
I sure am going to miss these views though......
There is so many more stories I could share, yet if I do that, It'll take you a year to read everything let alone write it all....
I wish I had a pic of you with the kids to share on here Anita....
Now last night as I sat with my sobbing 10 year old as it sank in for her in that moment that Dallas is over, I can only thank insurance for that...... Though in light of that mess, I just hope that the new team we will have will do just as well if not better and we will be able to gain many more memories on this journey....
Hey at least the next surgery the kids have I might get the chance to see the downtown skyline at night of Little Rock and see how that compares to Dallas. Though I will always be partial to Dallas.... AND I can at least say I got to hang out with mommas on this journey more than once in Dallas, and even got spoiled with the Cheesecake Factory with a few of them the last trip....
Last trip, little did I know it would BE the last.....
Every stay I had at the RMHD, I met new families..... Now I may not get the one in Little Rock but I think I can still have the opportunity to meet families. As Rebekah said on her blog,
"And we eat together, talk, help, comfort, laugh together. And for a few minutes, the world seems a little brighter, a little less cold, a little more hopeful, a little less lonely."
So many families I tagged on this post when I shared it on Facebook and for those connections, I'll always be thankful. Though the season with Dallas is over, the journey is far from and I just hope and pray now that lasting memories will continue, new families will befriend mine and new doctors and nurses will do just as well if not even better as what we had....If it wasn't for the team we have had in Texas, my children would be dead or suffering, and they are neither. If it wasn't for therapists who do ST, PT & OT, they would be suffering and disadvantaged. If it wasn't for families like mine all over the cyber world, Children's Craniofacial Association and Camp Laughter, they would feel alone. There may be few near who understand yet so many abroad do. That is something insurance can never take from us.
To the first nurse who took us in at the first pediatrician, to Cindy, the nurse to Dr. Fearon, to the first nurse with our pediatrician now of eight years and his head nurse to the L&D nurse who held me as I sobbed, to the doctors (most) who have treated my kids......
For that, I am thankful. Good, bad or other in this journey, to know that doctors and nurses risk so much for saved yet also lost lives is something that can never be repaid. Thank you to the CNA's, the LPN's, the APN's, the RN's, the general practitioners, pediatricians, specialists and surgeons caring for my children with a loving heart.
Blessings!
~ Special Momma ~
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