if you’re not going to use it?? We’ve been toying with this question for a few years now. As we know, Isaac has a very nice, very expensive esophagus – custom made, just for him. For a while it was simply a conduit for spit, so to speak. Slowly he started to try soft foods – ice cream, pudding and yogurt have all slid down that esophagus.
On occasion Isaac does try to chew – this typically results in him gagging and wretching once the food hits the back of his mouth… and mommy or daddy putting out their hand for that chewed up food!
Remarkably, this week he seemed to finally wonder himself what that esophagus is for – he grabbed two cheerios, chewed them up and swallowed them!! We had fun counting as he chewed up two at a time, telling me each time they were in his belly
Since Thursday night we have continuously enjoyed chewing and swallowing cheerios. I never thought I could get so excited about cheerios. Assumption may lead most to believe that Isaac has eats by mouth, and has the ability to eat. We have questioned both of these ideas – we don’t know the functionality of Isaac’s esophagus, because no kids have been as complex as him. We hope it will work like a normal esophagus, but given the fact that it curves funny and has had several leaks we just don’t know. As far as actually eating – imagine never having swallowed food, then being asked to do it after 4 years of having a handy feeding tube? Isaac has a lot to overcome when it comes to the sensation of eating.
This is why that cheerio eating run is so exciting! First of all, for the first time ever Isaac consciously chewed and swallowed something. He not only didn’t panic at the feeling of food entering his throat, but he got it to his belly! This is the first sign we’ve seen that Isaac may actually get the concept of eating, and be able to do it – pretty exciting!
In terms of overall health – Isaac has been improving. His breathing still isn’t great, we’re still throwing allergy meds and nebulizer treatments at him left and right!
For now we enjoy cheerios, and keep on playing!
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.
Tonight, what it’s like to have a special needs brother…. from Talia!
Having a little brother that has medical conditions is a wonder in life. It’s the one thing you focus on because you want to learn about it or you want to see it. I’ve seen my little brother in severe and scary times and I know that he is a brave kid. But it’s hard to understand why HE gets the attention. I know that he needs care and 24/7 attention where he needs to be taught something or given meds, but sometimes I want some part of that attention. Somtimes it’s not fair. Sometimes I get lonely. Sometimes I feel deserted. But in the end, even though it doesn’t feel like it, your loved ones will always love you with all their hearts. Maybe sometimes they’ll have a couple of times where they can’t spend some quality time with you, but you have to know that, that kid needs help. Think about it, if your parents or your brothers or your grandparents hadn’t been their for your brother or sister,then you probably wouldn’t even have a brother or sister right now to be there for you. Their always there for you. To call your name like sissy or bro-bro, to help you with situations, or even to make you laugh. You need them or your life wouldn’t be complete. They’re there to be who they are, no matter if they have a restriction or no matter if they’re being stubborn because they’re just being themselves. Even at times when they’re being silly or if they’re making you laugh, they wouldn’t of made you laugh if they weren’t being themselves. You should be glad you have them. So to any child that is about to have a baby brother or baby sister or someone that already has a sibling, always love your loved ones no matter if they might be a little different from all the others. Always spend time with them to make them laugh and always make time for them because laughter and love are the top things that can heal a sick child.
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!
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.
First of all, technically trachs and showers don’t mix, but we’ve always proven to be big time trach rule breakers! Last week Isaac found mama in the shower, and decided he’d like to try one too…. of course now I can’t take a shower by myself! I wouldn’t normally share our shower habits with the public, but there is so much to it that I think is important to share.
Isaac LOVES the shower, and he gets braver and braver with each one he invades. He’s gone from sticking in a two to letting water hit his belly. We are very careful to protect the trach, so I’m not sure how much braver we’ll let him be
Tonight he kept begging to stay in longer, and had a few tricks up his sleeve to convince me. He started by WRITING I-S-A-A-C on the door of the shower!! Okay, so his A was a little off, but it was absolutely amazing to see. When mama started trying to end the shower again he spun around and pointed to the tile on the wall and said “mama, square – 4 sides”! Holy cow, who taught this kid how to talk! Before the end of the shower he had grabbed each of my hands and planted a kiss on them
He eventually ran out of tricks, and we got him dried off and dressed. I watched his face tonight during his special shower, between his big eyes and beautiful smile I knew the benefits way outweighed the risks. My son’s smile can speak a million words…. Even with no words, he speaks. His eyes and smiles speak volumes, he clearly has already achieved a lifetime of experience in just his first 4 years and when you least expect it you can see it in even the briefest glance.
Isaac’s light seems to just shine brighter and brighter. This weekend he danced, he talked (and talked and talked), he gave a million and 5 kisses and he loved us all up. A year ago we were parked in the hospital, watching his leaking esophagus and holey lung with baited breathe…. life is so very good right now!
Sometimes that’s just what we need…. a little confirmation. The last time Isaac had a recurrent sick was when he had a leaking esophagus and holey lung – not an experience we want to repeat. With his recent sicks we all (meaning me, his dad and his favorite pediatrician!) started to get worried.
We decided to get Isaac in for an esophagram – a way to check for leaks. The good news is – there are still no leaks in his esophagus!! There have been some sleepless nights this week as we have all thought about this.
As we keep thinking about it we are leaning more and more towards Isaac just having aspiration events – something we knew could happen as his airway was manipulated. Not the best news, but certainly NOT the worst!
In light of all of this, Isaac has continued to remind us that he is still the most amazing 4 year old in the world. Yesterday I called him I,I – his chosen name for himself. He responded by telling me “No, I-S-A-A-C”! When this kid isn’t kissing us he is dancing, when he is not dancing he is singing…. he is just so happy and resilient. Over the past week we have had numerous dance parties, lots of singing in the car, some serious spelling, and lots of laughing….. it is therapeutic to be around Isaac.
For now we enjoy life – through Isaac’s eyes it is so much more enjoyable!
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………
First, let’s start with a list of everything AMAZING that Isaac has done this week…
• On Monday he decided to stack soup cans in even stacks. He realized that he had 2 stacks with three cans each, and one single can on the end. He quickly demanded that I get more soup cans to make his third stack “3 high”!
• On Tuesday we played hide and seek. Isaac’s first hiding spot was simply standing next to a chair with a towel his daddy threw over his head. As mommy “looked” everywhere for him we listened to the most AMAZING laugh coming from under that towel! Isaac quickly found better hiding places for his turn, and loved counting to 10 (or 12, or 15 depending on his mood) and using his IPad speaking program to announce “Ready or not, here I come”! The joy in that laugh will stick with me for a long time.
• Also on Tuesday – after mama told him “I love you” for the 75th time he responded with “I love you too”!
• Lastly – also on Tuesday we went to the grocery store and I somehow ended up coming home with play doh, gold fish and mini m&ms! We got to work with our play doh and Isaac requested an eye for his creation – I made the letter I instead. He loved it and instructed me to make an s, an a, another a and a c – my son just spelled his name! And in case I missed it he pointed out that he has “2 a’s”.
All of this amazing came at just the right time, as we have been doing a lot of thinking about that trach and when to start working on really getting it out. For a long time we have been slightly consumed by getting Isaac’s trach out – as it is one of the things that causes the greatest disruption in our lives. Because of the trach Isaac is at greater risk for infection and illness, we are unable to leave him with a babysitter or any other caretaker – only nurses, and it makes people think he is much less capable than he is. In getting wrapped up in getting the trach out we have lost sight of some things…. there has been serious talk amongst ourselves, Isaac’s pulmonologist (lung doctor) and pediatrician about how ready his cruddy right lung is to do the work required of it if the trach comes out. We’re really just not sure it can handle it. He will have to work harder to breathe without the trach, and if he gets too tired he could potentially collapse his airway – putting us pretty much back where we started from.
This isn’t to say the trach won’t come out- it will. We think it is not going to come out in a month or so, as we were hoping for.
Isaac’s pulmonologist pointed out the last time we saw him that Isaac is finally in a good place – he is talking, and kind of healthy, and playing and going to school and enjoying himself more overall – why mess that up? What has come out of this a “let’s give Isaac’s lung more time to heal” attitude. We plan on contacting his ENT (airway) surgeon to get his take – but really, we like the way Isaac breathes right now.
We are hoping for a few more months of healing – oxygen at night to encourage the right lung to heal, lots of breathing treatments – and lots of playing!
So, it’s disappointing to accept that OUR timeline doesn’t match that of Isaac’s right lung. However, with all of the amazing we are seeing it really is hard to be disappointed for too long. Who knows, we may hear back from the surgeon and decided to try capping in 3 or 4 weeks, or we may push it back for a few months – what really matters is just how far Isaac has come
First the good – I got to take Isaac, his big sister (Talia), his favorite cousin (Brooklyn) and his grandma to the Yo Gabba Gabba Live concert Friday night – what a fun night! Isaac was a bit sleepy, but perked up when he saw his favorite guy, Plex hit the stage. We danced and sang our hearts out. We even snuck to the front of the stage and had a blast throwing confetti (when you’re 4 it doesn’t get much better than confetti!).
It is during times like this that I see (again) just what an amazing child Isaac is. I think because of all he has been through he enjoys life more. He finds excitement in things that not everyone does and you can see it in his eyes. When you’re near him you pick up on his excitement and find yourself getting more excited about little things. This kid has spent more time in the hospital than any child should, and it has given him the gift of enjoying things on a level most of us do not. It is so easy to get wrapped up in negatives, and complain – but Isaac doesn’t. He finds every single bright side there is, and he makes sure we all find it with him.
So the show took on new meaning, because of Isaac – what an amazing, fun, NORMAL experience for us to all have together. Sneaking to the front was the icing on the cake for all of us, and not something this rule following mama would have done pre-Isaac…. but now it is oh so easy to break the rules for just a little bit more fun
Now – the bad – Isaac has pneumonia AGAIN. Although he hasn’t had it nearly as much this winter as he did last winter, this still stinks. Of course, being Isaac – you would never really know it by his actions. He’s a little bit slower, but not complaining. He showed subtle signs – and when we checked his heartrate was pretty high and his breathing was pretty fast. He had a rougher than normal night, resulting in a trip to his pediatrician today. Sure enough – pneumonia.
The timing is particularly bad, as Isaac was supposed to go into the Operating Room last week for a look at his airway and a possible trach capping trial. This trach capping trial is just what we need to get Isaac’s trach out, one month of successful capping will allow us to go trach free. However, things could be worse. In all honesty, this mom’s intuition was telling her this is not the time to try a capping trial, no way to explain it – it just hasn’t felt right. Hopefully some extra time with lots of breathing treatments and other home interventions will get his very ugly right lung ready to perform well for us when he does get to the capping trial!
Yesterday we celebrated Talia’s birthday – this pneumonia having boy got up on the trampoline and jumped his heart out, because he is Isaac after all.