Day of change

the first couple of RMH

the first couple of RMH

Today is officially the “Day of Change”, this is a day where we are encouraged to go to our local McDonald’s (who really needs to be encouraged to do that??!) and deposit our change in the collection boxes for the Ronald McDonald House.
We are happy participants in this activity, the Ronald McDonald House is literally our home away from home. Our first stay at an RMH lasted 8 months. For 8 months we had a place to sleep and home cooked meals, we also had a place to connect. When you live somewhere for 8 months you get to know people pretty well, whether you like it or not. After a few months in Minneapolis started getting to know other families, families we never would have known in our regular life. Families that had a sick baby, a chronically ill child, or had a perfectly healthy child at home who suddenly wasn’t perfectly healthy. We experienced a lot of loss, all of those families will stay with us for a lifetime.
We also experienced a level of friendship we never imagined. We refer to our RMH peeps (staff included!) as our family, and they are truly are. We got to know people on a level you probably shouldn’t, in a place you’d rather not be. We shared our ups and downs, and did it all in the comfort of a nice, big, comfy house.
When you have a child in the hospital life becomes about that child. RMH gave us an escape, it gave us a place to sleep at night, we didn’t have to worry about how we would pay for it, or how long we could stay.
We also never had to worry about where our meals would come from. THIS is huge. First of all, the expenses of eating while your child is hospitalized add up. On top of that, hospital food can get pretty bad 🙂 At RMH volunteer cooks come in to make meals every night, and often times brunch on Sunday. There are fridge’s full of leftovers and pantries stocked with food that anyone can take from. The desserts alone can keep a tired mom and dad going 🙂
RMH made a profound impact on our lives, to give a little back we will be stopping by our local McDonald’s tonight to drop some change, pick up a Sweet Tea (Isaac’s favorite!) and spend a few minutes being grateful.

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the countdown is on

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 🙂

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what is love?

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….

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anniversaries!

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 🙂

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It’s still January…

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!

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