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Another RMH visit :)

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Last week we volunteered again at the Ronald McDonald House in DC, and we were lucky to have a fun group of friends and family helping us out! It is truly an uplifting experience, and very meaningful to us. For 8 straight months the RMH in Minneapolis fed us, housed us and generally cared for us. Since then I can’t count how many more times we have stayed there, even when we don’t stay there we end up there playing and eating :)
When we have been there in the past I always put “giving back” on my mental to do list, I never got around to it with everything else going on with Isaac. Now that we are somewhat settled it is so nice to finally pay someone back, in some way for all that was done for us. It really is like coming home, even arriving at the DC house, it is a place of such tremendous comfort.
Meals aren’t something you would even really think of – I was shocked when we arrived in Minneapolis the first time and learned that dinner is provided nightly, and brunch is provided on the weekends. I had no idea then what that would mean for us. To not have to worry about that lifts such a load when you’re already exhausted and worried. For us, it was initially less money to spend in the cafeteria, and often a quick break from the hospital. As time went on it became a time of comradery, we got to know so many remarkable families – some going through similar experiences to us, others who taught us about things we had never heard of – and who taught us to count the blessings we had.
Some of the families we ate dinner with lost a child, some lost more than one. Because of this experience we are now able to think about and honor those children. We know that even though Isaac gets sick (and, today he woke up sick!), and gets poked and spends a ridiculous amount of time in hospitals – he is OKAY. Just a simple dinner, cooked by wonderful volunteers taught us this.
So, I am already booking our next volunteer night – because it feels so good to be back home :)

what a difference a week makes!

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One week ago tonight we were preparing for Isaac’s trip to the PICU at Children’s National Medical Center. We spent a night feeling pretty defeated, and sad for our amazing boy. However, once again Isaac has brightened our days and quickly turned our thoughts around.
He had a wonderful week, once we got Isaac settled on Saturday we took him to the Herndon Festival – he rode a ton of rides, and played lots of games – we all felt much better at the end of the night! Monday night was exhibition night at Isaac’s gym, he was so very proud to show off his tricks. Isaac wore his speaking valve all week, giving us a little bit more faith in his ability to someday wear a cap.
I was still feeling pretty bitter after the debacle that was Isaac’s last PICU stay, so I hadn’t contacted them about a follow up appointment or capping trial. They realized they hadn’t heard from us today and called to set up a clinic appointment next week….. coincidentally today his special, colorful caps arrived in the mail. Daddy put one on Isaac, and lo and behold he didn’t panic!
Isaac wore his cap for a few minutes, he got angry with us, so we took it off – this has to be a positive experience for him now. A few minutes later he tiptoed over to his bag o’ caps and put one on himself!! He didn’t wear it for more than a minute, but what an amazing sight that was! The key here is to let Isaac be in charge – he doesn’t get too much say in too many things, and he deserves this.
Of course all of this excitement occurred as we were packing and prepping him for tonight’s trip to Minnesota! Isaac has an OR date with Dr. Hess tomorrow morning to dilate that esophagus. Once again, he is showing no signs of needing a dilation, so we’re hopeful that maybe that esophagus is in good shape :) The plan was for Isaac to stay until Sunday for a play day with his girlfriend – Ireland. As it typically goes – Ireland decided to take it old school, and was admitted to the PICU today. There is some concern about bowel obstruction – so please keep her in your thoughts!
Looking forward to more capping in the days to come :)

finally!

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For the first time in a long time Isaac did NOT get sick before a bronch and capping trial. At 7:30 Friday morning he will roll into the OR so Dr. Preciado can get a good look at what is sure to be a beautiful, open airway :) From there Isaac should get a ticket straight to the PICU, where they will try capping his trach later in the day.
The tricky part of this is that Isaac has a “very reactive” airway – meaning it swells whenever they do something like stick a camera between his vocal cords. They will try to cap his trach in the afternoon, if he has a swollen airway he may need an overnight dose of heavy duty steroids – which would push capping to Saturday morning.
Once Isaac is capped he has to remain capped in the PICU for 48 hours before coming home. If he can’t successfully cap by Saturday they will send him home and we’ll have to discuss what to do next. This is the scary part – if it doesn’t work. Dr. Preciado has said before that he is essentially out of ideas, so presumably at some point we may have to seek another opinion. Our hope is that it won’t come to that. We really think Isaac has shown us that he is ready!
All of this being said, we are left to entertain a 4 year old in the PICU for the weekend, which stinks. This time around the “hospital fairy” will visit each day with gifts that Isaac can use to entertain himself.
We also have a little boy who just doesn’t like having his trach capped. Imagine going from breathing comfortably through a nice hole in your neck, to being forced to breathe through your mouth and nose – only that trach is still there creating a slight obstruction…. that is what Isaac has to do to prove himself, and he doesn’t like it.
Please feel free to offer a prayer, or cross your fingers for him this weekend!

the countdown is on

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This Friday Isaac has his bronch and capping trial, and nerves are on edge around here! If you know anything about Isaac you know that he sabotages all attempts at capping trach, and this time is no different! Last night our sweet boy picked up a container of powder and dumped it on his face… none went straight into his trach, but paranoid mama wasn’t sure if he inhaled it. Of course this morning we have a boy who only wants to lay around and breathe fast! I quickly emailed his pediatrician, who left me feeling much less anxious – we think the lungs might be a little bit irritated, but otherwise ok. As the day progressed he got up and started moving, of course just to make me look like a paranoid overreacting mama! I think he is in a bit of a funk, but hopefully it’s allergies and all of our tricks will keep him healthy :)
Isaac had a wonderful weekend – gym class Saturday morning was a blast, he loves to show off his tricks! On Sunday morning Isaac and I headed to the Ronald McDonald House (RMH) in DC with some friends to cook brunch for the families staying there. The RMH in Minneapolis is literally like home to us – one of the most important things they do is provide meals. It’s not just a meal though – it’s time to be around other families and talk and relax and network a little bit :) It was so important to us to give back in some way, and luckily the RMH in DC has given us that chance.
It’s great to introduce some of our non RMH friends to this wonderful home away from home, unless you visit and get to know the house it’s hard to understand just how very important this place is to us and our sanity. Bringing our friends there with us is like letting them in on an important secret – you leave happy, fulfilled and so very appreciative for what you have!
We are looking forward to getting through the capping trial this weekend (and a weekend of PICU life!) and getting back to serve dinner at RMH in a few weeks with a bigger crew :)

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.

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 :)

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.

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 :)

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.