Category Archives: tracheotomy

Our boy can BLOW!

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First – the exciting news, Isaac can BLOW! With the trach Isaac obviously breathes through his neck – making the blowing of bubbles and party blowers impossible. We have been trying to train him to blow through his mouth, again utilizing that fancy airway that has been created for him. He hasn’t quite gotten it, until this weekend. He noticed all of the other kids blowing on their party favors at a party and with sheer Isaac determination set out to do it too! He came home blowing away :) Just one more sign that maybe he really is ready to lose the trach.
This week has been declared Global Tracheostomy Awareness Week, Isaac is sporting his “Trachin it one day at a time” t shirt today to honor it :) I think it is pretty important to recognize the trach, as it definitely saved our Isaac’s life. Before Isaac got his trach we had never met another person with one. Our impression was that it was disabling – we were so wrong. It is hard to get upset with people who are shocked to see Isaac do the things he does with a trach, because we never imagined it was possible. We now know so many trachie kiddos, and their families. They are trached for a variety of reasons, and use a variety of equipment – but they are all amazing, resilient kids.
Our trachie boy runs, climbs, goes to gym class, swims, dances, sings, and BLOWS. There are no limits to what he can do – and that is important for everyone to know. Isaac’s trach doesn’t limit him – it empowers him.
It is all he has ever known. We remember the sick baby we had before the trach – the baby who slept all of the time because being awake AND breathing was too much work. We remember the baby with tubes, so many tubes that the first time we saw his whole face was the day he got his trach. We went from fear of the unknown to utter elation – we knew instantly that this was the best decision we could make for him. Learning to care for a baby with a trach was not easy, and bringing him home was scary – but we survived. The more we relaxed the more we could see what this kid can do!
Isaac has grown by leaps and bounds these past 4 years – his progress never ceases to amaze us. He is, of course, so much more than a trachie kid – but the trach is such an important part of who he is, and why he is so well known and loved.

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!

stares…

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Isaac gets a few stares when we go out, some we notice – I’m sure we miss a lot. Frequently a person looks at him, but they look just a second or two longer than normal… other times it’s blatant. Typically it doesn’t bother me, I always tell him it’s because he is beautiful (we all know he is!).

Tonight Isaac’s grandma and I took him to the mall. We rode the train in the mall, and waved wildly to everyone we passed. After our train ride we stopped to get some food in the food court. Isaac happily chewed on his small piece of chicken nugget, until he had a little choking episode. This resulted in him spitting chicken into mommy’s hand, while shooting mucus from his trach at the same time. The cough is quite loud, and obviously can attact attention. This happens at home a few times a week – we put our hand out and collect the chewed up food, and suction to make sure his trach his clear, then continue with dinner. I realized as I looked at the mortified young ladies at the table next to us, that this is not normal. I’m not sure if they actually finished their meal :) Of course, it would be nice if we could take Isaac away to deal with the madness, but when he is gagging we have to act. Sometimes it’s gross.

Later, we got on the elevator, with two men. One stared at Isaac the entire 45 seconds or so that we spent together. I suppose he actually stared at his trach, but it was pretty hard to miss.
I was a little bit frustrated by the stares, both in the food court and the elevator. I was feeling sorry for Isaac, and I suppose for me. Then I thought about it – Isaac didn’t even notice, he had no idea he had been stared at in any way.

He is such a happy little boy, and he goes about his day in such a positive way. Does staring mean anything? He IS a beautiful child, and he does have a tracheotomy. Does it matter whether they are staring because of his trach or his beauty? There really is no difference. It really doesn’t mean anything, maybe they walk away a little bit more educated and stare a little bit less at the next guy they see with a trach, maybe they don’t.

In the end, we have a happy little boy. A little boy who choked at dinner because he was eating chicken – yes, eating! My little boy, with the broken esophagus sat in the food court and chewed on a piece of chicken for 10 minutes, showing amazing drive to eat – that deserves some stares.

who’s the boss??

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Clearly, the answer is Isaac! We all know that this little thing called a capping trial has to occur for Isaac to get his trach out. You may or may not remember that just over a year ago Isaac was successfully completing his capping trial and had a date to get his trach removed (forever!!)…. 5 days before that date he started getting sick, we later found out about that hole in his esophagus and lung and scrapped the whole decannulation (trach removal)….
We’ve been working really hard to get him ready, and finally got in touch with his surgeon last week – they happened to have an opening tomorrow and scheduled him for a look at his airway and an in hospital trach capping trial – yay!! When given enough notice, Isaac finds a way to sabotage as much as he possibly can – so we started telling him about this big event on Thursday. On Friday morning he woke up, sick! Seriously – we found out later in the day that he had strep throat and an asthmatic reaction to allergens – mama’s childhood asthma :(
We emailed his surgeon, but only told him about the strep – hopeful that over the weekend we could get the asthma under control and sneak in tomorrow for that bronch…. then we were reminded that this is Isaac we are dealing with. His asthma is not too well controlled today, though better than it was Friday. So, the trach capping has been postponed.
The hardest part of postponing is not knowing when another time will open up, Isaac has a pretty great surgeon who is booked for the next 100 years, so we have to do a waitlist kind of thing. Isaac was so ready for this a week ago, it’s always disappointing when it doesn’t happen – but we want him to be in the best possible place, and this just isn’t it.
It was a bit of a roller coaster weekend, hoping and watching him. It seems when I get into a poor us state something always comes my way showing me how lucky we are. I started following a blog recently, written by a pretty gifted mom writer – about raising her special boy, Gavin. Gaving died this weekend, and his mom has shared the story with complete grace. I cannot imagine the loss and heartbreak, I read her updates and my heart just sighs. At the same time she is so positive and uplifting it is hard not to smile.
Just when we think we have it rough, something comes along and shows us how lucky we are. If you care to meet Gavin check out http://www.kateleong.com/ – this family is nothing short of remarkable.

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.

what is love?

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We’ve been back from Minnesota for a few days, and while we were there we got Isaac and his girlfriend together for a playdate, and photo shoot :) Not only were our two “I’s” born with the same birth defect, they are also both trached and have had more surgeries than you can count on two hands… a match made in heaven.
If you watch Isaac and Ireland together you will see an amazing connection, it’s very difficult to explain. They have a connection – a very real, very mature connection. They touch like a couple many years in love, they offer each other kisses and soft touches. One often leans in close to the other, and as they sit forehead to forehead it is not hard to imagine the thoughts they are sharing. They somehow KNOW each other on a level that is not typical.
When I ask Isaac who his girlfriend is he shines – and he says Ireland. My son is so lucky to have made a connection with someone who truly “gets” him. She has walked the same road, she has felt the pain and confusion, and she has also come out of it stronger. I know they are only 4, and we are (mostly) joking when we plan their weddings, but at the age of 4 they know love. They show us what love is. You can’t help but smile and ooh and ahh as you watch them.
Because of these two kids we know what love is, and it makes us better. Our connection to the Meyer family is deep, again – we’ve been through so many of the same things. It seems at times like our EA kiddos are leading the way….

anniversaries!

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Last week several important anniversaries took place in Isaac’s world. They are both very important anniversaries……

On March 12th, Isaac’s “trachiversary” passed – this is the day that he received his trach in 2009! Up until that day we had watched his ability to breathe get worse and worse, our baby was exhausted and unable to keep up with the work it required to simply BREATHE. We were told that the trach was a strong possibility, then told it was a definite – but we were still not ready to give in. On March 11th one of Isaac’s nurses called me at work and essentially said enough is enough. She explained to me that it was inevitable and our bigger goal should be to avoid an emergency tracheotomy – which could result in more severe consequences. We were scared, this was the most devestating decision we have had to make for Isaac – it was the one we knew we had to make, but it was so severe and life changing.

When I saw Isaac after his trach surgery I cried, not sad tears this time. I cried because my baby looked more at ease than he had for a long time. I cried because we had known him for 4 months, but never seen his entire face – there was always a tube and tape somewhere, and on this night we were finally seeing ALL of him. I cried because I knew, instantly, that we had made the best decision. Life with a trached 4 year old is not easy – it is a constant source of infection (it’s like a little petri dish!), it can become blocked at anytime (requiring an emergency trach change), and it makes him “different”. However, he is alive – and I think that’s a pretty good trade!

The second anniversary took place on March 17th. One year ago, on St. Patrick’s Day, Isaac was discharged from the hospital after a 6 week stay to repair his broken esophagus and lung. It was at times a scary stay, and with an infant in two it was definitely a long stay. Since that discharge ONE YEAR AGO Isaac has not been hospitalized for any illness – only routine procedures!! In his 4 years this has never happened, he has never gone more than 6 months without a sick hospital stay.

We kept this impending anniversary to ourselves – just so Isaac wouldn’t get any ideas!!

Isaac is in an amazing place, one that we have not ever seen. We have a little boy who talks nonstop, when he runs out of things to talk about he sings, when he runs out of songs to sing he bangs a drum. While doing all of this he dances – and dances, and dances. Could he be feeling the same joy about a normal life that we are??

Tomorrow Isaac, mama and his Goo Goo (grandma) fly to Minnesota for an esophageal dilation. Of course while we are there we will see Isaac’s girlfriend – Ireland. These two have a connection that you don’t often see in kids, they are so affectionate and loving towards each other – again, they both seem to have a deeper understanding of love and affection after all they have been through. We are planning a photoshoot with the wonderful photographer who volunteers his time to the Ronald McDonald House (Jim Bovin) – he takes beautiful pictures and we can’t wait to share our lovebirds pictures with all of you :)

don’t jinx it!

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Like most inner circles, medical mamas and medical professionals it seems have a “rule” This rule is to not ever say something out loud like “he’s been healthy for such a long time” or “we seem to finally be past the worst of it”. The last time I had a coworker ask me how Isaac was, I responded “great, hasn’t been sick all winter”….. oops. Literally 24 hours later we were at the doctor being diagnosed with aspiration pnuemonia. We find ourselves tiptoeing around, and not sharing happy things until they have passed and the fear of jinxing them is gone.
That being said, Isaac was acting sick again Friday – breathing fast, kind of quiet, typical Isaac getting sick. At the very last minute (literally) we went to see Dr. Carroll (thank God her office is 5 minutes from our house – divine intervention??). As we pulled into her parking lot his breathing slowed and his color was normal – seriously. Dr. Carroll came in and he went one step further by taking my phone and typing I-S-A-A-C on the very small screen. She listened to his chest and thought he sounded great (of course!) and after discussing the proper protocal nurses may want to follow with me when I call with an “emergency” at the end of the day (“Kim, have you taken your xanax” will be the new protocal!) we laughed and left. Isaac took it another step by dancing the whole way home.
This weekend his trach secretions have been green, not a color we like. Today he was more tired and his lungs sound junky. Really? We did a trach change, he threw up (another “Oh, Isaac”) and we did a neb. This resulted in a little bit more ick in the lungs and a discussion as to whether or not to start antibiotics (jury is still out on that one). Of course, since then he has been playing and laughing and talking. Oh boy. When do we stop panicking with every sick? How do we know what is normal and what to jump on top of fast? I’m leaning towards him just being sick – for the past week or so. I hear that is “normal” :) Since we are sharing some of the same symptoms I think I may be onto something…. but this is the continuing issue for us – when to panic.
We have had the best winter yet for Isaac. What I didn’t mention earlier is that I told Dr. Carroll that in a few weeks we will be celebrating one year of no hospital stays for being sick – he’s only been in for procedures. This is a HUGE accomplishment for Isaac, as I’m pretty sure before that we never went 4 months! As soon as I said it I wanted to suck it back in – what was I thinking? Even if he got admitted tomorrow, almost a year is pretty big as well. I’m not saying the magic date, that would be a serious jinx.
Even sick for the past few weeks we have been amazed by this kid. He is talking nonstop (be careful what you say around Isaac now), singing is a normal occurance, and dancing is of course a favorite.
This week mama will watch him obsessively for signs of anything worse than a normal sick, and eventually we’ll learn how to know the difference!

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.