Category Archives: Surgery

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??

life is ………. normal!

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Our lives with Isaac have never, ever been this “normal”. We have no catastrophes in sight, no major illness, no additional tubage coming out of our boy…. we seem to have lived so much of the past 4 and a half years in crisis mode. Even our travel to Minnesota at this point is incredibly routine and planned. Sometimes I sit back and marvel at how good it feels to be normal.
In Isaac’s normal life there is still a lot of extraordinary…… this normal child breathes through a hole in his neck and eats through a hole in his stomach. He sleeps in the living room, as he has nursing overnight and quite a bit of equipment by his bed (oxygen concentrator, trach humidifier, suction machine, feeding pump) and having him in a corner of our living room is just easier for all of us.
In the middle of all of this we have a little boy who can’t stop dancing – we often catch him in front of the dishwasher watching his reflection as he dances. He sings, and sings and sings. His rendition of “Twinkle Twinkle Little Star” is beautiful :) He runs frantically when the ice cream man comes through, and can’t wait to go line up and get his treat – they last a week and we usually end up throwing them out – but he goes out everytime because it is such a joy to see!
On Tuesday nights we join a few other families at a local ice cream shop for dinner and fun – oh how he loves these nights. He marches in and goes straight to his friends, and often ends up dancing :) He loves his friends, and they are so wonderful with him.
Isaac continues to teach us amazing lessons, and just how lovely normal can be!

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 :)

take that milestones!

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Last weekend Isaac went for a ride on his bike, my little boy who spent his first year in the ICU and who can honestly list a variety of therapists as some of his closest friends did something totally normal for a 4 year old…. he rode his bike! Of course, his stamina is not that of a typical 4 year old, but he totally loved every minute of it.
Watching Isaac do “normal” things will never cease to amaze any of us. We have been blessed with a child who teaches us something new about ourselves regularly, he has lived through some pretty awful stuff – but in the end he is a pretty normal 4 year old. There have been times when we couldn’t imagine normal, and certainly didn’t take time to picture what normal would be like for Isaac – this is why these times amaze us.
Lately, I find myself more and more aggravated with some pretty normal stuff – I get very frustrated when I see someone working towards a goal involving a larger house, a more expensive car, the most high tech television, etc….. I cannot explain to them how NOT important these things really are. Fortunately, most people don’t know how bad things can get, and I am conflicted about that. Maybe sometimes we need to see the bad to appreciate the good. I hate seeing my Isaac hurt, with a passion. I have cried and felt unimaginable guilt while sitting next to him, when ALL I can do is hold his hand and tell him he is the most amazing boy I know. My husband and I have gone without paychecks for months on end, relying on our savings and the kindness of friends and family to pay our bills – because we couldn’t leave Isaac’s side. It sucks.
I decided a long time ago that it doesn’t matter how big my house is, we may very well stay in our 3 bedroom (defintely too small) townhome forever – what matters is that we have a roof over our heads and our baby’s are healthy. My husband and I will never drive a new car – because we know the value of socking away any money we can, just in case…. we have lived just in case. We buy a lot of stuff used, and I love a little thing called “freecycle” because it is FREE :)
I have to remind myself often that my friends haven’t lived our lives. While I am glad they haven’t, in a way I feel sad for them – we have been given a reason to find joy in the very smallest moments, and to find value in things that don’t typically scream “valuable”. Once you have seen a family mourn a child that you loved deeply yourself, or watched your own child lay in a bed with countless tubes and IVs hanging from them, or heard the cries in the hallway of a family that is living through their own version of hell with their child you can’t forget that. In fact, you live to honor it.
In this way, I am lucky – I hate some of the things I have seen and the moments we have lived – but without them I wouldn’t know that my 4 year old riding a bike could bring me to tears because of the sheer normalness of the moment.

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.

just when we think we’ve got it figured out!

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In the ever changing world of Isaac, our trach plans seem to have once again changed. Yesterday we saw Isaac’s “trach doctor”, Dr. Preciado. We are so incredibly lucky to have such an amazing team of doctors for Isaac – even though they literally practice out of four different hospitals! Dr. Preciado is the surgeon who gave our baby his voice back, after he was trached Isaac did everything silently for about two years – including crying and laughing. Dr. Preciado gave us the gift of sound from Isaac and we are forever grateful. He also happens to have trained at the U of M before settling in DC – we appreciate the Minnesota in him in as well :)

Dr. Preciado agrees that Isaac’s right lung is a big obstacle at this point, but he feels confident in Isaac’s reconstructed airway and thinks we can keep moving forward! He suggested a prolonged capping trial – we’re thinking a few months, breathing around his trach for a few months will help strengthen those breathing muscles. Dr. Preciado is not very easy to get appointments with (sign of a good surgeon!), his waiting list for office visits is 8 months! Luckily, they had a cancellation on February 22 – so Isaac will go in to the operating room and let Dr. Preciado get a look at his airway, then report to the PICU to potentially try capping his trach!

Of course, things are now up to Isaac. We are doing everything we can to prepare him – he has been wearing his speaking valve, it encourages him to breathe out through his mouth like a normal person. We are doing lots of nebulizer treatments, and we are still giving him overnight oxygen to help heal that little lung.

Isaac is just so amazing, we are fine with the trach as long as he needs it. Yesterday he sang the entire way to and from the appointment, and showed off his finest roar in the Dr’s office. Simply hearing his voice is a gift, and now that he has mastered “I love you” he is able to melt even more hearts!

Never in a million years did we realize the impact that little 3 pound 3 ounce creature would have on us and our lives………

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!

Nothing but GOOD news!

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What a difference a year makes :) Isaac had his OR date with Dr. Preciado on Friday. Dr. Preciado did some laser surgery on the back of Isaac’s left vocal cord, but thought the right looked good, so he left that alone. He thinks this might be just what Isaac needs to cross over that hump, and he thinks Isaac will be trach free by summer! Of course, we tend to go with the “we’ll believe it when we see it” approach, because this is Isaac we’re talking about. We’re looking at another OR date to check out the airway and a possible capping trial in 3 or so weeks (which could turn into 5 or 6 knowing Children’s!). If he can successfully cap we will do another sleep study and move forward with getting the trach out from there.
Isaac is so full of personality, he leaves us laughing constantly. It is becoming more and more difficult to discipline him, as we have to fight not to laugh at his antics. Being the smarty pants he is, he knows this and often ends his antics with a smirk – making it even harder to keep a straight face.
Next week Isaac heads back to Minnesota for an esophageal dilation, it’s been 2 whole months! Hopefully his esophagus hasn’t scarred down too much and we can maybe stretch and go out there every 2 months. While he’s there next weekend an awesome gym in Minneapolis is hosting a competition that has turned into a fundraiser for our family – wow! We are so blessed to have so many people that love and care about our boy. While a portion of the trips to Minnesota are reimbursed for us by Medicaid, the entire cost is not – we still end up paying for one airline ticket and some extras along the way. The help of those who love Isaac is tremendous!
Something we have not shared is that Greg’s entire department was laid off in November. Of course, getting laid off is not convenient for anyone, but it’s been a little bit harder on us. It has been nice to have him home – we haven’t had to scramble to get Isaac to appointments at all. However, Greg has been looking hard for work and would really like to find something soon. If anyone knows of anything in the area that would be fitting for someone who has worked in the IT field please let us know :)

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.

lots of excitemitent!

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We have had more excitement this week!  First – Isaac continues to amaze us (us, including his speech therapist) with his communication skills.  We knew he had some amazing thoughts, and it is wonderful to watch him develop the skills that will allow him to really share with us.  To watch him create full sentences on his Ipad is nothing short of amazing.

As of today, we are two weeks away from Isaac’s next bronchoscopy – a bronch is a way for his Ear Nose Throat surgeon to get a look at his airway and work on anything that still needs fixing.  Our hope is that the surgeon will take a look, like what he sees and proceed with a capping trial.  A capping trial would mean Isaac is only breathing through his real airway, his trach will be covered with tape and he will breathe like a normal child.  If he can do this for a month the trach can come out!  Let me add here, the trach is still in place, so not only is Isaac forced to breathe through his mouth and nose, but he is doing it with a pretty nice obstruction in place – since he now has to breathe around the trach tube in his airway. 

To back up from this point, there are signs Isaac can give us that he may be ready for a capping trial – a major one is being able to wear his Passy Muir Valve (PMV).  This valve covers his trach – it allows him to breathe in through the trach, but forces him to breathe out through his mouth and nose.  Earlier this week I put the PMV on him while he was sleeping, so he couldn’t panic and pull it off.  He was able to wear it (and breathe) for 10 minutes before waking up and pulling it off.  The battle is just that it makes Isaac feel uncomfortable, it is a differnet way of breathing.  Of course, we also have to watch for signs that he is unable to breathe.  He showed us he can breathe when he napped wearing it, and then the battle began!  Today, Isaac finally let his dad put the PMV on – he wore it for a total of one and a half hours tonight!!  This means his airway is still working, and we could actually be capping his trach two weeks from today.  Of course, the bronch and Isaac’s reaction to capping will be the true determination, but we are feeling hopeful :)

Last – I finally got around to checking messages tonight (that happens every week or two!), and we had a message from Isaac’s “wish granters”.  He has been approved for a Make A Wish trip to DisneyWorld – we are booked for October 9th through the 15th.  He deserves this so much.  I almost didn’t look into it, he isn’t an obviously sick kid, and it never crossed my mind.  Once it was suggested several times by a few nurses I decided to check into it.  When I spoke to the organization the first time they pointed out that it doesn’t sound like Isaac has had any life threatening experiences…..  then I realized it.  His trach is automatically a qualifier – if it comes out or clogs (when he doesn’t have the ability to breathe around it) he cannot breathe…..  that sounds pretty life threatening to me!  Once they spoke to Isaac’s doctors they were on board, and it’s been a wonderful experience working with them.  Isaac will be thrilled to take this trip, and we can’t wait to be a part of it with him. 

We are so excited with the progress Isaac is making, and can’t wait to share more good news!