Category Archives: NICU

Dear “Manhattan moms”

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Today I read an article from The New York Post that disturbed me to the core. In essence, there is a group of elite moms from New York that hire a “disabled tour guide” when they travel to Disney World. The point is to get ahead of the lines, as Disney is extremely accommodating and offers passes to cut lines to those with disabilities. We took advantage of this when we took Isaac to Disney on his Make A Wish trip.
I’ve been thinking about these moms all day, and the fact that they hire a disabled person in order to avoid waiting in a line. I’ve thought about what I would say if I met them, my first thought was “f” you… but, in the end I would really like them to know what it’s like to raise a disabled child, since they so badly want the “perks” that come along with it.
Raising a child with disability is all consuming. There is no predicting, there is little routine. When you least expect it you can end up living in a hospital – this means little to no sleep, little to no privacy, and more importantly it means that something is significantly wrong with your child – and it is something that you cannot fix. Your child’s life is in somebody else’s hands and you are a bystander.
Once a week we lay Isaac down, pull his trach (his lifeline) out of his neck and replace it, that is the routine part of living with a child with a tracheotomy. The not so routine part comes when a plug develops and occludes his airway, and you are left with seconds to change that trach and get him breathing again.
Our days are spent suctioning the trach, driving to therapy and doctors appointments, ordering supplies, organizing supplies, cleaning supplies, feeding Isaac 6 times a day through his feeding tube, fighting tooth and nail with insurance companies, and making sure we love our other children enough to empower them as well.
We don’t take vacations, because every couple of months we fly from Virginia to Minnesota to see the one surgeon in the country who can keep our child alive and functioning. When an emergency arises we are on the first flight to Minnesota, and there are no disabled tour guides to take Isaac’s place during these very scary times.
We have lived separated from our friends and family for close to a year, to save our Isaac. We have gone months without paychecks and relied on the kindness of friends and family to help pay our bills. Our son has undergone 21 major surgeries, he has spent months completely paralyzed and sedated, he has gone through substantial drug withdrawal 4 times. The majority of his first year of life was spent in the ICU – again, there were no “tour guides” to take his place.
I wouldn’t trade this journey for anything. I hate the pain and discomfort Isaac has endured – I always will. However, without this we wouldn’t know true love, happiness, strength, resiliency and devotion – and really, isn’t that more important than jumping to the front of the line??

lifesavers……. aka NURSES!

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Yesterday was nurse appreciation day, and boy do we appreciate our nurses! Nurses (and doctors, and therapists, and a whole lot of other medical personnel) have played an active role in Isaac’s entire life. We love and appreciate them all, but closest to our hearts have to be the nurses.
I never knew the name of one of the nurses that came to transport Isaac from the hospital he was born in to the hospital that cared for him, but I will never forget her promise to me that I would see him before they left – as I was being transfused she pushed him into the room and got him close enough for me to touch him before he left. We learned very early, when Isaac was in the NICU how important nurses are. They literally keep our babies alive. When an alarm sounds, they are the first to arrive. When a crazy mama has a crazy question – they answer it. Isaac’s nurses prepared us for every procedure and surgery. They allowed us to assist with dressing changes and tube changes and even got to know us well enough to turn their heads when we just fixed whatever was wrong with his tubing or wires instead of calling them to do it as we should :)
Nurses rode along on the plane to Minnesota with Isaac, and monitored and ooohed and aaahed over him in flight. Once again, nurses prepped him for surgeries and monitored him closely day in and day out. When we all had that “something just isn’t right” feeling it was the nurses who chased down doctors and explained in detail what wasn’t right.
Unfortunately, we’ve witnessed several children “code” – and learned all too well that once again, the nurses are the first to arrive and act. I’ve never met a nurse that doesn’t love their patients. It is because of nurses that we were able to sleep at night, our Isaac was always surrounded by love.
Since coming home nurses have played a bigger role in our lives. Isaac has a nurse at home with us 16 hours a day. We are only without nurses from 3pm – 11pm. His nurses are his lifeline. They go to school with him, they go to therapy with him, they love him just like we do. Isaac’s nurses are like family. They care for him (and our other kiddos!) like they are their own. Without them, we couldn’t work or sleep – and Isaac couldn’t attend school.
There isn’t really a good way to thank someone for loving your baby, caring for your baby and keeping your baby alive the way nurses do. Isaac baked his home nurses treats on Sunday, he worked very hard on them – they were made with all of the love they have given him over the years :)

Boy band saves the day??

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I’m pretty sure I’ve said before that the first maternal/fetal specialist to look at Isaac during an ultrasound at 21 weeks suggested that we terminate the pregnancy. He did this after first telling me “this is bad”. We, of course, opted not to terminate (that’s obvious at this point!), but it made that time in our lives that much scarier. If the doctor who specializes in broken babies suggests termination – it must be bad, right?
We spent a few weeks telling ourselves everything would be fine, but I’m not sure how much Greg or I truly believed that. We did research, there were tons of babies that survived with Isaac’s birth defect, and much, much worse. It was just hard not to go back to that original doctor and his very severe prognosis.
Within a few weeks of that appointment I had tickets to see my all time favorite band in concert – New Kid’s on the Block (now the grown up edition – NKOTB). I LOVED this band as a teenager, and I mean love. When we got tickets to the show I was over the moon, but had not been feeling too happy about anything in the weeks leading up to it.
I was about 24 weeks pregnant the night of the concert, I had never felt Isaac kick – a side effect of carrying an EA baby is way too much amniotic fluid, he didn’t swallow any –so he had tons of swimming room, eliminating kicking opportunities. As the show started I felt him – my Isaac was dancing his heart out (okay, he was probably scared to death, but I like to think he was dancing!). He kicked for the first 10 minutes or so of the show – and I couldn’t tell you one thing that happened other than that. I didn’t care that my heartthrobs were on stage, I KNEW my baby was okay and would be okay. It was an amazing, zen moment for me. I don’t know why a kicking baby at a NKOTB concert was the deciding factor me, I just know that it was. I left that night ready to take on anything Isaac brought my way – and bring it he did!
Shortly after this I was placed on bed rest at home. In order to check on Isaac every morning I would put headphones on my belly and play him some NKOTB, and he would kick (maybe running away, that’s up for interpretation). I loved feeling him moving. When we both had enough I would pop in a nice, quiet acoustic CD (of course, performed by a member of NKOTB – Danny Wood) and he would calm down. We did this every day, until he threw me the next challenge :)
Eventually, a bit sooner than planned – Isaac was born. We all know most of the story from there. What’s important to take from this for me is the fact that music now plays such a huge role in Isaac’s life. I’m not sure if there is a connection to our first concert together and all of the in utero music, but I’d like to think so!
Isaac sings and dances with reckless abandon… we catch him dancing with his reflection in the dishwasher, dancing to make his brother laugh, singing when he doesn’t even realize we’re paying attention. I still find it awesome to ride in the car and hear him singing along to the Fresh Beat Band in the backseat – he knows all of the words! The fact that he sings and dances with such a lack of inhibition, after all we have put him through, is remarkable.
My son is awesome – this I’ve always known. His lack of inhibition and love of fun still astound me.
And, in the end – I have to thank my favorite boy banders (NKOTB) for showing me WE would be okay.

being a special needs mom

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I noticed a few blogs this week were focused on what NOT to say to a special needs mom, or how you can help your special needs mom friends….. and I thought about it quite a bit. There is really nothing you CAN’T say to me, I am a special needs mom – and while I’m sure the other moms who blogged about it were not saying they would have it any other way, I would definitely not have it any other way! I also know that not everyone knows what it is like to be a special needs mom, or special needs dad, or grandma or grandpa, or aunt, uncle, sister, brother, etc.
So – what is it like to be a special needs mom? It is beautiful, and heartbreaking, and sometimes a little bit exhausting. It is lessons I never thought I needed to learn, and an appreciation that I never expected.
I always thought I was pretty open minded, and that I knew a lot about the world and causes….. being Isaac’s mom has taught me how little I really knew, and how much more open minded I could actually be. I had great friends, and I learned that they will stand by me through anything.
I have made new friends – other special needs moms, some I have never spent time with in person, but we have these amazing phone conversations and we just “get” each other. I can call them in the middle of the night from the ICU and tell them how badly I need a piece of chocolate cake, and they understand why. I have been exposed to other special children, and I have learned oh so much from them.
I have learned compassion, resiliency, love, unconditional relationships….. they have taught me that bad days aren’t always the worst days. These amazing children (including mine) smile with a knowldege of something we don’t understand – it is the knowledge of their survival. How can a smile not mean more when you’ve been through as much as these kids? Nothing that they have been dealt is fair, but they don’t complain.
My Isaac has a compassion that I have never seen in a four year old. He loves to love, he consoles with great understanding. When he speaks it is magical, the fact that he CAN speak is in and of itself a miracle. When he tells me “I love you” I melt. It has such deep, amazing roots. Most parents value their child’s voice and particularly their first words – we live for Isaac’s voice. It is a voice we missed for several years.
So, there really is no right or wrong thing to say to me. Because I have this amazing gift, in the form of a beautiful 4 year old, that I marvel at several times a day. I sometimes put my foot in my mouth or say something I shouldn’t have – that is life. There are no rights and wrongs when it comes to special needs moms – just talk to us. Keep us in your thoughts when we need it, and laugh with us when we need that. Marvel at our children the way we do, and love all of the little quirks of your own children a little bit more because of my Isaac.

It’s still January…

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Which means it’s still EA awareness month! I think it’s important to explain the process that got Isaac an esophagus, it is such an important part of his story…
A surgeon at the University of Minnesota developed a technique to grow the esophagus from the inside a few years back, his name is Dr. Foker and the technique is now called the Foker Technique. This technique involves going into the chest, and putting stitches through each end of the esophagus. The stitches are pulled out through the back, every day the surgeon places what looks like straws (and I’m sure is something way more medically important than a straw!) through the stitches. This creates tension, which encourages the esophagus to grow.
This technique was attempted with Isaac here in VA, unfortunately this is not a procedure that is done frequently in too many places, and not enough is known about the little details, particularly the little details that keep the esophagus from tearing while those stitches are pulling. The top piece of Isaac’s esophagus tore a few days into the stretching process, at that point the game plan changed – it was decided to do a different procedure, commonly referred to as a spit fistula. It’s pretty gross, the esophagus is brought to the skin and a hole is opened – allowing spit (and anything else that is swallowed) to come out of the chest. A bag is placed over it to collect the spit, and as you can imagine it doesn’t take long to create a bit of a stench.
It was soon after this that we were encouraged to look into Minnesota (a different blog post will have to come about that decision!).
When we got to Minnesota we expected to be there a month or two… we ended up there for 8 months. Unfortunately, the spit fistula and preceeding tear rendered the top piece of Isaac’s esophagus useless in the stretching process. This meant we were doubling the time and work, we now needed to grow the bottom part of his esophagus more than 10 centimeters (the average length needed is 5 centimeters). We don’t know how much Isaac actually needed – all Dr. Hess would tell us is “a long gap is a long gap” – so the actual length of the gap may never be known!
While the esophagus is stretching it is crucial that the child not move – at all. This meant keeping Isaac completely paralyze and sedated – he slept, unmoving. As you can imagine, as time goes on it takes a lot of drugs to achieve this.
The entire process typically takes 10-14 days, Isaac’s first round lasted 7 weeks. For 7 weeks our baby slept. As time went on a toll was taken on his body – numerous bones broke (from turning him and diaper changes). The decision was made to wake him up. For the third time in his life Isaac went through drug withdrawal, he was 6 months old.
We got to take Isaac out of a hospital for the first time in his life at 6 months. We spent two amazing months at the Ronald McDonald House, as we couldn’t leave the cities with him.
After 4 more weeks of stretching, the two ends of Isaac’s esophagus met. On October 2nd, 2009 Isaac underwent his 14th surgery, his esophagus was connected!
This of course, was not the end of the journey, as we thought it was at that time. Isaac had a leak in his esophagus that kept us in Minnesota for several more months. His is one of Dr. Hess’ more complicated cases, and as he has pointed out numerous times – there is no rulebook with Isaac.
At the time of connection Dr. Hess did not even know if Isaac’s esophagus would ever work. In the quest to close the hole in Isaac’s esophagus several more procedures took place, he coded in an operating room at one point when the glue that was being used leaked into his chest cavity and found it’s way to his trachea – future fistulas originated there.
Eventually we were able to convince Dr. Hess to let us take Isaac home, Virginia home. We arrived home for the first time in Isaac’s life on December 23rd, 2009. Isaac still had a leaking esophagus (and it wouldn’t be the first time!) – as we watched, the leak healed on it’s own.
When we came home, Isaac was 13 months old. He could not sit up on his own, and he was very easily over stimulated after having spent the majority of his life in a controlled ICU. We thought when we left Minnesota that first time we were leaving forever, we had no idea… we have returned to Minnesota for 5 additional surgeries, countless procedures – at least 4 times a year.
This turned into a really long post, and it’s not very easy to explain – but I think it’s important to explain – it is such a part of Isaac.
In order to explain it in pictures I will add some – the pictures really tell the story :)

PS – Our Isaac has been a bit under the weather, please keep fingers crossed for an easy recovery!

Dear Ellie….

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There is an adorable little boy named Tucker, from Virginia who also has EA. I was put in touch with his mom, Ellie as they were beginning this journey. Like us, they decided to move Tucker to a hospital that they felt was more experienced, and despite my best efforts to sway them to Minnesota, they went to Boston :) So, tonight Ellie blogged, and said that Tucker will get a trach next week – my immediate thought is “yippee!”, but I’m not sure at the stage they are at right now she shares my excitement.
Anyways, prepare for a long post – I offered her some words of encouragement, she dared me to “keep ‘em coming”….. so tonight I’m writing a Dear Ellie letter – to tell her about the amazing journey that is just beginning and why I embrace the trach :)

Dear Ellie (or any other almost trach parent),
We saw Isaac’s trach coming, we were told repeatedly to prepare- but we were sure the doctors and nurses were wrong. I am a special education teacher, all I knew of trachs was very extreme – and not where I envisioned Isaac, in a million years. I didn’t want a trached child. The night it became more a question of when, not if I had a breakdown. I cried for several hours while I rocked him. I mourned him – and when I think back I think it’s because I knew nothing about what it would be like. I didn’t know how beautiful this would be, I had no knowledge of anyone else who had been through this.
The night of Isaac’s surgery I saw him for the first time without a single tube on his face – for the first time in 4 months I could see his WHOLE face. I cried again, tears of utter joy.
My baby who had been sleeping upwards of 20 hours a day and was miserable overall woke up – and he woke up full of life, and smiles, and love. I think he knew from the start that he needed this, he was just waiting for us to jump on board. He was MEANT to have a trach.
When we arrived in Minnesota, trach and all we learned again what a good decision this was. Isaac’s stretching process kept him paralyzed and sedated for a total of 11 weeks in his first 10 months of life. Inevitably, he would have been trached. Because he came in trached life for everyone was easier. He didn’t have to be intubated and extubated, weaned dramatically off a vent, and the smile on the face of the Anesthesiologist when they hear your child has a trach is priceless. He did require some weaning, don’t get me wrong – but it was much easier.
When we came home from Minnesota Isaac was 13 months old, and still had that trach. As a result we were given 16 hours a day of nursing care. Oh, the ups and downs of nursing care! It is strange at first to have someone in your home 16 hours a day, someone doing what you think you should be – taking care of your baby. But, you set the limits – your nurses understand that this is your home and your child. When you are ready there are many parents that can educate you on this – but always know that overall you are in charge.
I will say, nurses are truly a blessing. Our nurses are like family. Some have been with us for many years, we hang out and chat like old friends. They love my Isaac like he is their own (we even refer to one as the boy’s “African mama”). They take care of all of us, and we are eternally thankful.
Isaac’s trach is beautiful – it is a part of him. When he learned his body parts he also learned his trach, and when I ask him what makes him special he points right to it. Now that we are getting to a point of possibly losing the trach in the next 6 or so months (after 4 years!) I think about how much I will miss it. I also think about how he will miss it. We may both require therapy :)
Now – it’s not all butterflys and roses. Winter sucks, cold and flu season REALLY sucks. Isaac has spent what felt like entire winters in the hospital. Trach kids get hit harder, it’s just the way it is. Emergency trach changes suck – your first one will leave you shaking, but then you’ll realize what an amazing thing you did and you’ll look around for someone to high five! Some people will stare, you’ll tell Tucker it’s because he’s beautiful, but every so often it will bother you. Loud suction machines suck – but you get used to them. Dealing with medical supply companies REALLY sucks, but you’ll learn to fight and sound sweet all at the same time :)
I am not the only trach mama in the world who can tell you these things, and more. As I read your blog tonight, I flashed back to the feelings I felt before, during and after Isaac’s trach. When it was all said and done I laughed about how silly my fears were – but they were oh so real. I’m not sure if it would have helped to have someone tell me these things, but I think it would have. Sometimes it’s nice just to know you aren’t travelling down this road alone.
Today – I love Isaac’s trach and ALL it has taught us, and all it has brought us. The friends who have become family and the support it has brought us is hard to explain. Allow others to come in, let them get to know the and improved Tucker – and let him teach them the way Isaac has taught us.

EA awareness month

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Did you have any idea there was such a thing? There is, the month of January is EA/TEF awareness month. So, really – what is Esophageal Atresia? I’m going to start at the beginning of Isaac to truly explain it.
At our 20 week ultrasound (which was really done at 18 weeks since I’ve never been able to wait) we found out we were having a boy, we also found out that our boy appeared to have no stomach. We weren’t too concerned – I mean, certainly there was a stomach there… we returned the following week to look again, and once again – no sign of a stomach bubble. A very nice radiologist came in and referred me to a high risk OB who could narrow down what we were looking at. She did tell me we were more than likely looking at some sort of birth defect.
Our first visit with the high risk doctor was when we realized this could be bad – mostly because that is exactly what the doctor told us. He took a look at our quickly moving, already very handsome little Isaac and said “this is bad” (from this point on we can refer to him as Dr. tact-less!). Dr. tact-less then looked at me and said “we need to discuss termination”. He really said that, to me – as I watched my beautiful boy flipping and swimming on the ultrasound screen.
Thanks to an incredibly thorough ultrasound at Children’s National we were able to see that Isaac did in fact have Esophageal Atresia, and no complicating additional factors that commonly come with EA (anything from missing kidneys to Down Syndrome).
We learned that EA occurs three weeks after conception, one cell that should divide doesn’t. It just doesn’t divide.
Because of this a child is born with one of 5 types of EA/TEF (Esophageal Atresia/Tracheal Esophageal Atresia). There are 5 types of EA/TEF, of course Isaac’s was one of the more complicated. In a baby with pure EA (Isaac’s EA) there is a top piece of esophagus that ends in what is called a blind pouch, it just ends somewhere in the upper chest cavity. If you’re lucky, there is a lower piece that comes up from the stomach, and also just stops. If you’re REALLY lucky, your baby has TEF – which is essentially a connection between the Esophagus and Trachea, not a dreamy situation – but a much, much easier fix. In this unlucky circumstance we were lucky to have a diagnosis before birth – this is a luxury most parents do not get.
Fortunately, we found out rather quickly that our 3 pound, 3 ounce baby had a good chunk of lower esophagus – which SHOULD have made him easier to fix. We were told to expect several months in the NICU – at the time it felt like the end of the world.
A common belief with EA is that if you leave the baby alone the two ends of the esophagus grow towards each other, eventually close enough to connect. We know now that this is not the case – and logistically doesn’t make sense. We did try this with Isaac, and his surgeon at Fairfax did try to connect him – but was unable to. He also tried the technique that ultimately worked, but due to a lack of knowledge about the technique this ended up tearing the top part of Isaac’s esophagus – making the gap between the two ends even larger and making the top piece essentially un-usable.
Eventually, Isaac required his trach as a result of the first surgeries and the impact on his vocal cords – the night we confirmed this was necessary mama had a brief nervous breakdown in the NICU – which turned out to be quite the blessing…… a nurse that only worked with Isaac for a few hours the whole time he was in the NICU happened to be working that night, and she encouraged me to look at other options…… bringing us to Minnesota.
Of course, the story gets longer from there – but we have covered the basics of EA as they relate to Isaac. We often ask ourselves now if Isaac is still and EA baby, or a former EA baby. I think he will always be an EA kid – for the time being EA still means esophageal dilations every month or two, risks or tearing that very expensive Esophagus and lots and lots of nasty reflux.
So, there is EA in a nutshell. Isaac is Isaac because of EA – the experiences it has given him (and us) have shaped him into the amazing boy he is.

altered dreams…

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This week I read another special needs mom’s blog, it was about everything that changed in her life, and her dreams when her baby was born.  Later that day I was driving when a memory hit me – I remembered sitting in the NICU with teeny, tiny Isaac and crying….. because I was afraid he’d never enjoy a hamburger and fries.  As I thought about this moment I started laughing – did I seriously mourn a moment like that??  Yes – I did.  There are so many things we just assume our children will do, and that we will do with them - and this was a very small example of one of those normal things we might miss out on.

Of course, when looking at the big picture now, this was such a silly worry – but we had no idea then what we would face.  When faced with the big picture a burger and fries don’t amount to much.  This being said, they are still pretty important – as a symbol.  Yes, we are more worried about Isaac having a secure airway, and the ability to speak, and an esophagus that doesn’t just start leaking – but we also want him to have all of the normal experiences he can.

This week Isaac started a little gym class, not something I ever thought he would be able to do, but he LOVED it.  Kind of his version of a burger and fries :)    He loved playing and interacting and having fun.  He did have a parent standing by ready to suction at any point in time (not normal!), but he got to experience it.

He also has started DRINKING out of a sippy cup, of course he then developed a nice case of aspiration pneumonia – but he loves to drink from his cup!  He also likes to drink sweet tea, that comes from McDonalds – close to a burger and fries??  We’re getting there :)

So, while our dreams for our children change dramatically – we still have dreams for them.  Sometimes the dreams change, sometimes they just take longer to achieve.  Have I given up on Isaac ever enjoying a burger and fries??  No, I know he will, eventually.  In the meantime I may follow my friend Lindsay’s lead and start blending them up and putting them into his feeding tube….. dreams can change :)

scars….

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Last Friday the tube that has been a part of Isaac since April (the red tube coming out of his chest) fell out…… just like that – it fell out.  Not an unusual occurance, and definitely one that makes us a bit happy, the loss of this tube will hopefully cure some of the infection he has had these past few months. 

So, we took a picture of Isaac’s tubeless chest and posted it on Facebook – kind of a “yay the tube is out” picture.  I was suprised (though not bothered in the least) when several people commented on the scars on Isaac’s chest.  His scars are just so normal to us now, we don’t see them first.  Nobody was negative – everyone just commented on the amount of scarring.

I realized that very little of Isaac is NOT scarred.  Between scars from surgeries, IVs and central lines, and chest tubes Isaac has them everywhere.  He has had two IVs in his head (when he was much younger), if you pull his hair back you can see the first one right in the middle of his head.  His hands and feet are full of teeny little scars from the MANY ivs in them when he was tiny.  His right and left upper arms bear the scars from cental lines, as do his right upper chest and his right upper leg.  On his left leg you can find the scar from his port (which was emergently removed when he became septic and very, very sick a year and a half ago). 

Also on Isaac’s chest/neck are the scars from the stretching of part of his esophagus, the progression of it as it moved down his chest.  There are also scars from the trachea surgeries he has undergone, and the attempts to start giving him a secure airway and get the tracheotomy out of him. 

Then there is his chest/stomach.  Isaac has had so many thoracotamies (cuts from the middle of his back to the middle of his chest) we have lost track – I would guess somewhere around 10 since he had two in a one month span this winter.  That scar is over a deep crevice where his ribs have been cut so many times they are now deformed.  As a result of this deformity (his 4th through 8th ribs are fused together) he has a large lump at the top of his ribcage, that certainly adds to his character.  There were a few surgeries that required Isaac’s stomach to be cut open – leaving about a 4 inch scar down his belly.  The second time it was cut he developed an infection, so his stomach was reopened and allowed to scar on it’s own – leaving a bit of a gnarly scar.

Aside from his thoracotamy scar are the beautiful scars on his upper back, from the “buttons” used to stretch his esophagus.  His esophagus was stretched by placing stitches through the end, pulling them out through his back and stretching them daily.  The buttons held the stitches in place – they are responsible for the esophagus.  In my opinion, they are his most beautiful scars……..

So, there is a history behind the scars – there are memories for each and every one.  Someday Isaac can tell his friends the stories behind the scars (because each part of his life is documented online and in pictures!), or he can make up great stories about them :)   While we have become accustomed to the scars and tend to look past them, they are so much a part of Isaac.  He will have us to tell him the stories of the scars (since we hope he will have no memory of the procedures that led to them).  Isaac will carry a constant reminder of how incredibly amazing he is, and have the evidence to prove it :)  

Scars can be a reminder of horrible times, but they can also be a reminder of how amazing you are and just how far you have come……..

What Healthcare Reform Means to Isaac

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Today I got a phone call from the person in charge of media for President Obama’s Virginia campaign headquarters.

I receive a lot of calls about campaigning, as I have always been a supporter of President Obama.

I felt guilty about my inability to campaign (no time really!) so I emailed the story of Isaac and our feelings about Health Care Reform to the campaign, and forgot about it as soon as I sent it…

Apparently somebody read it; that in and of itself was pretty exciting for me. The fact that when the campaign office was contacted looking for a family in Virginia that could speak about healthcare reform and what the upcoming Supreme Court ruling may mean to them my email was remembered is pretty awesome.

They wanted someone to do TV interviews and print interviews; I would only be able to do print from Minneapolis. They are working to see if it will work logistically at this point.

So now the question becomes – what does healthcare reform mean to my family (and THOUSANDS of others like mine?).

It means, in essence, that my son gets the best possible care in the country. It gives us the freedom to choose the best doctors and hospitals for him. We all know Isaac spent 11 out of his first 13 months in the ICU; this comes at quite a cost.

Around his first birthday a representative called to tell us that Isaac was approaching his lifetime maximum for insurance and may be dropped, in her words we should begin looking at “backup plans”. We had just brought him home for the first time at 13 months, we were figuring out nursing schedules and the ongoing confusion of home medical supply companies – we pushed it to the back of our minds.

A month or so later (February of 2010) Isaac’s medical supplies stopped arriving – upon inquiring with the supply company we were told he no longer had insurance.

Our baby had reached his TWO million dollar lifetime maximum in just over one year of life.

Just like that, he was uninsured. This was one month before the act was signed into law. Before the law there were crazy things like lifetime limits (frequently 2 million), pre-existing condition requirements and all sorts of other craziness.

Both lifetime limits and pre-existing condition requirements directly impacted my beautiful, heroic little boy. We were very fortunate, I had just returned to work from a long term leave of absence – which meant I could get insurance and put Isaac on it. I was also lucky to work for a county that did not have lifetime limits or pre-existing condition requirements. Not everyone is this fortunate, and in all reality this meant I could potentially have no choice but to stay in this job for the next 20 years to keep Isaac insured.

Because of the reform act we have a choice. We are not forced to keep one insurance for Isaac because it is our only option. We are not forced to rely on state Medicaid that could make decisions for us about which doctors he sees based on their review of his records, not any face to face interaction.

We are able to take Isaac across the country to the best surgeon for him. We are in a situation that many others face – the surgeons in our area are very good – but they are unable to give Isaac the delicate care he requires. His anatomy no longer resembles that of a normal child – his right rib cage is fused, his esophagus bends and stretches to the right and has scarring and narrowing that is not normal.

The surgeons at home (Virginia) tried very hard to help Isaac, but during the time they were helping him other problems arose (resulting in a tear in his esophagus and paralyzed vocal cords – leading to a tracheotomy). Without medical insurance for him his procedures and surgeries in Minnesota would not be covered, at all.

We would be left with no choice but to try surgeons in our area that we are not comfortable with, and who are really not comfortable with Isaac and his complex needs.

You may be healthy today, your children may be healthy today – and they may never need to know the extent of their healthcare and what it can provide them. This is not guaranteed. To question whether or not every individual should be covered in the case of a catastrophic event is not the question to ask – the question is – what IF this happens to you?

-Kim