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!
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 🙂
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.
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??
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!