Category Archives: Ronald McDonald House

what is love?

Posted on by
Reply

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….

anniversaries!

Posted on by
Reply

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 :)

It’s still January…

Posted on by
Reply

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!

Lessons

Posted on by
Reply

I took Isaac to participate in the last night of vacation Bible School Friday night – and as I watched him there, I thought about all of the things I have learned from him and because of him.  First of all, watching him absorb what was happening around him was amazing…..  he LOVED watching the big kids sing and dance and couldn’t believe he was allowed to stand up and dance too!  I realized it’s these instances of “normal” activity that teach me the most, and often strike me the most.

So, as I sat there I realized that Isaac really has been responsible for some incredible lessons over his very busy three years here with us.  Some are very obvious, others have come after deep thought and reflection.

The list begins……….

Break the rules – If we had followed all of the rules laid out for us by the many experts that take care of Isaac he would not have much fun.  He never would have gone “swimming” in a lake (first because of the water that could enter his trach, second because of the sand that could enter his trach!).  Isaac wouldn’t have attended school (as many thought the germs there would be his downfall)… he did get sick, but he also got to make friends and play and ride a yellow school bus – totally worth it!

My boys have spent more time in the ICU (and by time, I mean more than one hour) than any child should ever have to (either admitted or just hanging out with a big brother) – and I know they’ll both be much better men for it.  Talia has spent an extraordinary amount of time at the Ronald McDonald House, and she too will be a much better person because of it.  She does not look twice at a child who has no hair, or tubes coming out of them – this is a life skill most kids don’t learn.

Staying up late is pretty okay – Isaac doesn’t always sleep at night like other kids, typically at least once a week we have a late night party in our house.  When Isaac’s 11 pm nurse comes through the door he is awake to greet her.  I have learned to cherish these times, this is time that we get one on one with our Isaac.  This past Friday night we got up at 10:00 and danced to the Wiggles, IV and all – and we had a blast!  We watched this child lay in a hospital bed “sleeping” for many, many monthss – we have come to appreciate all time we have with him when he is awake and showing off that personality. 

Repetition of mama is a beautiful thing  -Isaac had NO voice from the time he was trached (at 4 months old) until he was 2, after several vocal cord surgeries.  He cried silently, he couldn’t yell for help or attention when he needed (or wanted) it, and he couldn’t say mama.  For the past year and a half he has explored his voice and his sounds and recently began saying mama.  He can say it over and over and over, to the point where I think “enough already” – then I remember his silence.  The sound of mama (even if said in rapid succession for what seems like 10 minutes) is beautiful! 

Family is more than blood – something I’ve talked about before, our hospital family.  We have met families that we never would have taken the time to know, because Isaac put us where we should be to meet them.  Our EA family is HUGE, and has grown to include many others.  It is important to know someone who lives your life, and to have someone to talk to about things that not too many people understand.  In watching some families fight for their children’s lives, we have seen others that don’t fight hard enough.  We have seen good and bad – and learned how hard to fight. 

We have learned how to fight – and fight, and fight, and fight!  We have learned that there is someone out there with an answer, it just may not be in our backyard.  We know that doctors are amazing, and the doctors that work with Isaac are more than amazing.  We have also learned that we have to push sometimes to keep some of those doctors listening to us.  Many of us “medical mamas” could rival most stalkers in our abilities to track down a doctor for an answer.

Essentially all that we have learned can be summed up in a few ways.  Always appreciate what you have, we have seen the worst things that can ever happen to a person, and because of that we appreciate what we have and know that in the grand scheme things could always be much worse.  When your gut tells you something, listen!  Push and fight for your baby, and sometimes doing that means making some people angry and earning a reputation – which is fine, because that means they are at least talking about your baby J 

Isaac has taught us much more than this – and he will continue to teach us.  We look forward to the lessons and the fun!

On a side note – today Isaac started showing some “sick” signs……  small signs that most people wouldn’t think twice about, but we know can be trouble.  We are nailing him with meds from every direction (the schedule is ridiculous!!) – so far no fever or lowered oxygen rates (which bring about instant “how soon can you get to Minnesota?” discussions) – so hopefully we are catching it early.  He had a great time hunting for monsters with his new flashlight tonight – another sign that he’s not too sick yet….. please send positive thoughts for no new major sickness.

Back to Minnesota

Posted on by
Reply

Tomorrow we fly back to Minnesota, I finally learned recently not to bother unpacking the suitcases completely.  We are hoping to be home Saturday, but learned after our last trip to arrive with enough supplies to keep us going out there for a bit longer.  With any luck, Dr. Hess will think the chest tube can come out – which would equate to full healing.  It is possible that he will replace it, which will either keep us there longer or bring us back in a few weeks – which is totally worth it to get Isaac healthy. 

Of course we will see lots of friends while we are there.  We never leave the state without visiting Isaac’s soulmate – Ireland.  She was born with the same birth defect as Isaac, we were fortunate enough to meet just before Isaac’s first birthday, Ireland is an older woman and had already been down this road a few times :)   Isaac and Ireland spent time sharing a room in the ICU while each stretched an esophagus.  Of course, during this time they were both completely paralyzed and sedated – giving us moms times to completely plan their future courtship and marriage.  It is remarkable how our families just clicked – not only were our children destined to marry, but it was like we had all known each other forever – this may be because we were living very similar lives. 

It is very hard to describe the relationship developed with our “hospital” family.  We easily refer to them as family, because we have that type of relationship – they are our family.  We have witnessed each other’s worst days, and celebrated the best.  Greg and I lived alone in Minneapolis for 8 months, we had visits from family, but we were facing all of this alone.  During this time we developed connections with AMAZING people that we never would have known otherwise.  We will forever be grateful to Isaac for giving us this gift – the gift to look oustide of someone’s appearance, and to get to know them in an environment that leaves little room to hide anything.  We know loss on a level that we never wanted to – we watched many families lose precious children – we learned how this can be done with dignity and grace, and how to carry on.  There are children we will honor and make sure Isaac always knows – his first roomate ever, Jesus……  his trach buddies Nora and Amayah……  His nighly visitor Riley – who used to walk the ICU with his mom and dad and wave at Isaac as they passed.  We also walked away from the loss of each of these children (and, unfortunately many more that we got to know while living at the Ronald McDonald House) knowing what strength and true love are.  It is an amazing thing to watch a parent fight for their child’s life, an even more amazing thing to watch a parent show their child how to leave this life – and give them permission to do it. 

When Isaac finishes up in the OR on Thursday we will go visit an amazing little girl and her family – Vivica.  We met Vivica and her mom through other hospital friends and again found that connection we have found with so many others.  Vivica is 12, she has fought and led an amazing life – with the love and support of her mom and older sisters.  Last Saturday night this awesome little girl received a new heart – her second gift of life (she had a kidney transplant several years ago).  A new heart!!  I cannot imagine how hard it was for her mom to send her in to that OR that night – the fear and excitement probably combined into overall anxiety at some point.  We were all up all night waiting for updates – and today Vivica is doing well.  It hasn’t been an easy few days, but today is a good day. 

And this journey, for so much of us, is really a day to day journey.  We live for the good days, and we survive the bad. I know that no matter what we would do this – survive.  Because of Isaac we have made friends that make it so much more than survival.  While we dread going to the hospital because all of the knowns and unknowns, we also look forward to it – because we get to see our family.  On Thursday I will go to visit Vivica and her mom, Donette - and I will give Donette the biggest hug I can, and we will cry together (tears of joy, and fear, and anxiety) and we will continue to live these intertwined journeys for the rest of our lives……..

What Healthcare Reform Means to Isaac

Posted on by
Reply

Today I got a phone call from the person in charge of media for President Obama’s Virginia campaign headquarters.

I receive a lot of calls about campaigning, as I have always been a supporter of President Obama.

I felt guilty about my inability to campaign (no time really!) so I emailed the story of Isaac and our feelings about Health Care Reform to the campaign, and forgot about it as soon as I sent it…

Apparently somebody read it; that in and of itself was pretty exciting for me. The fact that when the campaign office was contacted looking for a family in Virginia that could speak about healthcare reform and what the upcoming Supreme Court ruling may mean to them my email was remembered is pretty awesome.

They wanted someone to do TV interviews and print interviews; I would only be able to do print from Minneapolis. They are working to see if it will work logistically at this point.

So now the question becomes – what does healthcare reform mean to my family (and THOUSANDS of others like mine?).

It means, in essence, that my son gets the best possible care in the country. It gives us the freedom to choose the best doctors and hospitals for him. We all know Isaac spent 11 out of his first 13 months in the ICU; this comes at quite a cost.

Around his first birthday a representative called to tell us that Isaac was approaching his lifetime maximum for insurance and may be dropped, in her words we should begin looking at “backup plans”. We had just brought him home for the first time at 13 months, we were figuring out nursing schedules and the ongoing confusion of home medical supply companies – we pushed it to the back of our minds.

A month or so later (February of 2010) Isaac’s medical supplies stopped arriving – upon inquiring with the supply company we were told he no longer had insurance.

Our baby had reached his TWO million dollar lifetime maximum in just over one year of life.

Just like that, he was uninsured. This was one month before the act was signed into law. Before the law there were crazy things like lifetime limits (frequently 2 million), pre-existing condition requirements and all sorts of other craziness.

Both lifetime limits and pre-existing condition requirements directly impacted my beautiful, heroic little boy. We were very fortunate, I had just returned to work from a long term leave of absence – which meant I could get insurance and put Isaac on it. I was also lucky to work for a county that did not have lifetime limits or pre-existing condition requirements. Not everyone is this fortunate, and in all reality this meant I could potentially have no choice but to stay in this job for the next 20 years to keep Isaac insured.

Because of the reform act we have a choice. We are not forced to keep one insurance for Isaac because it is our only option. We are not forced to rely on state Medicaid that could make decisions for us about which doctors he sees based on their review of his records, not any face to face interaction.

We are able to take Isaac across the country to the best surgeon for him. We are in a situation that many others face – the surgeons in our area are very good – but they are unable to give Isaac the delicate care he requires. His anatomy no longer resembles that of a normal child – his right rib cage is fused, his esophagus bends and stretches to the right and has scarring and narrowing that is not normal.

The surgeons at home (Virginia) tried very hard to help Isaac, but during the time they were helping him other problems arose (resulting in a tear in his esophagus and paralyzed vocal cords – leading to a tracheotomy). Without medical insurance for him his procedures and surgeries in Minnesota would not be covered, at all.

We would be left with no choice but to try surgeons in our area that we are not comfortable with, and who are really not comfortable with Isaac and his complex needs.

You may be healthy today, your children may be healthy today – and they may never need to know the extent of their healthcare and what it can provide them. This is not guaranteed. To question whether or not every individual should be covered in the case of a catastrophic event is not the question to ask – the question is – what IF this happens to you?

-Kim

 

Late Night Ramblings

Posted on by
Reply

Isaac is getting an IV antibiotic every 8 hours, which means this mama has to make sure he’s getting it every 8 hours. It takes 30 minutes or so to run, however when you forget to unclamp the line (as I did this evening) it can turn into a 60 minute infusion. This gives me time to think, and ramble. We have been busy this week in Minnesota coming up with ways to entertain and exhaust one amazing little three year old.

We have visited an amazing train shop (if you’re ever in St. Paul Minnesota stop by Choo Choo Bob’s!), and we have visited the Minneapolis Children’s Museum. During these adventures we have seen this kid that was just on oxygen and about to be air ambulanced to Minnesota two weeks ago, run like a man possessed from one place to another with uncontrollable excitement.

It is remarkable times like these that remind us just how amazing he is. He is essentially doing all of this running and playing on 1 or so lungs….. the or so comes from the fact that the right lung is so very scarred we’re not sure how much of it he is able to use right now.

He is also doing all of this while breathing through a trach and being fed by a feeding tube (although the tube does mean less stopping for meals!).

Last week’s conversation with Isaac’s surgeon was anxiety inducing, to say the least. To hear the man who has saved your son’s life (and quality of life) offer options for saving the use of Isaac’s lung while eliminating chances for these horrible fistulas to keep occurring is anxiety inducing enough – our choices are to use a piece of muscle to separate Isaac’s lung and esophagus or remove the lower lobe of his lung.

To hear him tell you these slightly scary options, and follow them by telling you that neither will work for your son, to especially hear this man that you have all of the faith in the world in tell you that option two (removing part of the lung) is too dangerous to do now is frightening and makes you kind of mentally check out for a moment.

If the one person who has always been able to help and fix your child is telling you that neither of the options he has will work what exactly do you do?

When he tells you that the option that is “very dangerous” is something he’s holding onto just in case nothing else works and he has to resort to it how do you tell him no??

I have learned that it is important to mentally check out sometimes, because then I don’t blurt out every thought I have and I can process the hope he gives us in the next sentence.

Dr. Hess suggested keeping up what we are doing, very simply forcing the chest cavity to scar and block the fistula itself. It is tedious, and it requires frequent (as of now this means weekly) trips to the O.R., where Dr. Hess often throws in a surprise procedure or two.

This is exhausting, we are stuck in Minneapolis waiting out the next trip to the O.R., missing our family back home (Isaac’s baby brother and daddy in particular!) and missing the nurses that allow us to function as normal human beings on a daily basis.

It will mean a few more trips to Minnesota this summer, but we will do it. The care Isaac receives here is unmatched, and we understand that there are not any surgeons anywhere else that can do for him surgically what Dr. Hess does, or that can match the devotion Dr. Hess has to him.

It is hard to complain about the time away from home and the money spent, when you are at a place like the Ronald McDonald House, where you have witnessed loss on a whole new level (because the loss of a child is not a loss like any other).

We saw another family lose a beautiful little girl last week that Isaac once played with on a trip to Minnesota …. In the midst of all of our fear and concern we are reminded that we have very little to really complain about…… More on our lessons learned at RMH later.

-Kim