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
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.
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….
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.
Isaac has had some form of a feeding tube since two days after he was born. It is a part of him now. We owe his life to his feeding tube (among other things!). We love Isaac’s feeding tube – not only do we use it to feed him, but we allow him to do cool tricks with it, like eating ice cream and opening the tube to watch it all pour out.
Initially Isaac received a feeding tube for pretty obvious reasons……… when you do not have a connected esophagus you cannot swallow – which means you have to be fed somehow. At points in his life Isaac has had two different types of feeding tubes – a GJ (feeds into the intestines) and a G (feeds into the stomach). Each serves the same purpose, nutrition. Each also has it’s own pros and cons. GJ tubes help kiddos like Isaac avoid reflux, but they also cannot simply be changed out at home. When a GJ tube comes out (and this almost always happens at the least reasonable time) it has to be replaced under the supervision of a radiologist. The beauty of a G tube is that it CAN be replaced at home when it gets yanked out, and it allows us to feed Isaac at a higher rate for a shorter period of time – more like a real person. Of course, with food going into his belly reflux is also an issue.
Feeding tube awareness week is pretty important to us – since our Isaac is a “tubie” in the truest sense of the word! Any tube can be cause for attention, particulary on a child. Isaac does get a lot of attention, both for being cute and for his accessories It’s not always easy to have a tubie, we can’t just order him a meal at a restaurant. We have to keep up with feeding volumes, an annoying pump that clogs a lot (probably because mommy likes to blend normal foods and put them in his formula to give him some normal calories!), lots of spilled formula and the occasional spilling of stomach contents when one forgets to close the extension after giving a feed! There have been times in Isaac’s life when he was on his feeding pump 20 hours a day – for 20 hours each day he was connected to the pump and had to learn how to sit up, stand and walk with the feeding pump backpack on his back.
Even though it’s a pain, we obviously love that feeding tube. We don’t have to fight Isaac to finish his dinner, or take medicine that doesn’t take very good. As we are learning more and moving forward with Isaac we are able to blend normal foods and throw them in his tube, and we are able to do something called a “bolus” feed – feed him a lot over a short period of time – much like a normal kid.
At this point in his life Isaac is making huge strides in many areas, even though he now chooses not to eat – imagine all of the horrible things we had to do to him that revolved around his mouth early in life – a tube down his throat suctioning spit for 3 months, many intubations, many tubes down his nose and into his throat – couple that with the fact that he just wasn’t able to eat for the first year of his life, he’s come pretty far! We now have a boy that helps us connect his tube feedings and give meds, that alerts us when his tube is open and leaking, that eats pudding and ice cream and lollipops, that loves to lick any food we let him… He is a remarkable child, we say that a lot. He is also opening up doors and showing us all that a lot things that don’t seem too normal can become such a blessing in 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.
First – the official medical update… Isaac saw Dr. Hess on Friday for his routine esophageal dilation, it went great! Dr. Hess was very happy with the state of Isaac’s esophagus and dilated him further than usual. He also gave approval for us to push our trips to every 2 months – yay!! We have actually seen Isaac eat a few little things, he chewed a piece of banana and swallowed last week – huge in his world. He is more and more interested in food, he typically chews it up and spits it into a waiting hand, baby steps – right?
While in Minneapolis this weekend Isaac attended an amazing event, and we were again reminded how very loved he is – and how very lucky we are. Two local gyms – Timberwolf Crossfit and WhiteBear Crossfit teamed up to have a competition, and donated all proceeds to Isaac. Wow! Did I mention that these gyms are in Minnesota?? They heard about our Isaac and thought of him when they put this together. And put it together they did! Isaac even got to stand on the winner’s podium and receive a trophy – wow again! The picture of Isaac smiling ear to ear with his trophy really speaks volumes as to how loved he is.
There is no way to really thank so many people that enter our lives. We hope that they all realize what they do – not only for Isaac, but for all of us. None of this is particularly easy, though we are always looking at the bright side as we see so many who no longer have their beautiful child at home with them. Some of the time it just plain sucks – we get used to the new “routine” and we work with and around our fears. When it gets really tough we rely on the love and support of others. Some we know up close and personal, others from a distance – but the love remains the same.
Isaac is love, he is resilience and he is joy. He is the toughest 4 year old most people have ever met – and he has a smile that melts the toughest hearts (as I’m sure many learned at the gym this weekend). We say it over and over – we are oh so lucky to have Isaac and all of the drama he has brought to our lives. If not for Isaac and all of the craziness he’s brought us we would have never known that this type of love exists.
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!
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