Monthly Archives: August 2012

We had a great day…..

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Today was the BIG day, Isaac and his sister Talia got to go to the Fresh Beat Band concert, and then meet the band.  WOW!!  We found our seats and Isaac waited anxiously for the show to start.  To say he was mesmerized would not do it justice, he went into what can best be described as a Fresh Beat Band coma……. he couldn’t take his eyes from the stage, no dancing, no clapping, just staring.  He clearly enjoyed the show, and did let me clap with him at the end.  He did sign Fresh Beat a few times and snuck us a few shy smiles. 

After the show we gathered up our crew - we met Aunt Suzie and her crew there, and we headed backstage.  It was hot, and crowded; but this did not distract Isaac from his mission - to see “Shout”.  After the band came out they started greeting kids, Isaac stood at the front and watched for a while, then decided to take action and attempt to slide behind the DJ to get to his target.  While this tactic did not work, in intercepting him I realized his feeding tube had come out – seriously!!  After a brief moment of panic we found our stash of tape and taped it in place to keep the hole (stoma) from closing.  Our Aunt Suzie went back to the DJ and worked some magic to get Isaac and Talia to front of the meet and greet line……. this is where it gets good :)

As soon as Isaac approached our new friend Shout said “is that Isaac?” – seriously, he recognized him.  The whole band was so incredibly kind and interested in Isaac (his stunning good looks didn’t hurt him there!).  They all took a moment to personally greet him, and even though he played the shy guy role I think they knew what an amazing kid he was with just one look :)   Isaac didn’t want to look up for pictures, but we still got some good ones.  It was awesome to give Shout a big hug and thank all of the band for making Isaac’s hospital stays and home treatments easier. 

I can’t say enough about how incredibly genuine the band was.  Twist told Isaac he’s the bravest boy, and they were all sincerely interested in Isaac and his story.  Seeing his excitement when they entered the room, in spite of his shyness in person with them was heart warming for us.  We put him through so much, and we are a part of so many negatives in his life – we can’t thank Shout enough for allowing us to be a part of a positive! 

We took a few awesome pictures – the one below brought tears to my eyes, the sincerity shown by the band is beautiful. 

RMH family

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I’ve referred in the past to our RMH family, and how our family has grown by leaps and bounds throughout this journey with Isaac. The conections you form are not easily described. You are meeting families under the worst of circumstances, and seeing them through what will likely be remembered as the worst days of their lives. In a situation like this your guard is down, you are looking for support (as you are often far from home) finding someone who is able to relate to your own stress is a relief.
Many of those we include as family now have not had children with the same birth defect as Isaac – but they have lived side by side with us in the PICU and the Ronald McDonald House. They have seen you on your worst days, encouraged you to keep fighting and celebrated victories (both big and small). We have met families with children suffering from diseases and illnesses we have never heard of before meeting them. All of this connects us, in a way we are not connected to anyone else in our lives. It makes us a different kind of family, one that can live miles and miles apart, and speak only rarely – but still feel like we have an unbreakable connection.
We have been lucky enough to meet some families that have children like Isaac. One of those families has become even closer to us than any other, their little girl was also born with EA and is now trached. Ireland and Isaac shared a room in the PICU, and we knew from that moment that the two were meant to know each other, and bring us together. We all clicked immediately, and our children love each other. The Meyer family has truly become our family. On my worst day I can call Shanna (Ireland’s mom) and feel better instantly. When I am unsure of something going on with Isaac I can call Shanna and get her opinion, and there is a strong chance she has seen the same thing with Ireland. Our children share diagnoses, and doctors. Whenever we are in Minnesota we see the Meyer family, making trips to their home and seeing them in the hospital as they always come see Isaac.
This week Shanna and Ireland’s big brother Wes came to visit us. It is amazing to have them here with us, and we can’t wait to have the whole Meyer family come someday. We have had a wonderful visit, and Shanna is even accompanying Isaac and I on a trip to DC tomorrow for his bronchoscopy! We have spent our time reminiscing, lauging, talking and playing. Our lives seem to parallel one another – and our meeting is nothing short of meant to be! On bad days when we are wondering why this happened to Isaac (and us) we remember that without each and every event in Isaac’s life we wouldn’t have our extended family – and then we are grateful.

Isaac’s law

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Isaac’s law is something similar to “Murphy’s law”, only instead of everything that can go wrong will go wrong, Isaac’s is something like “anything that can happen WILL happen to Isaac”. There are so many examples in our lives of Isaac’s law, many just go right by us without us realizing them. Others are bigger – a routine esophageal dilation resulting in a torn esophagus that leads to a hole in the lung, said holes being closed and re-opening when Isaac returns to school and catches a flu, feeding tubes that get pulled out under almost impossible circumstances..
Our latest example of Isaac’s law – he went for a routine chest xray on Friday. The pulmunologist called and let me know that in fact, Isaac’s lungs look good (I’m not sure what scale he is using when he says good – good for a normal kid, or good for Isaac). What didn’t look so good is Isaac’s J portion of his feeding tube (the tube has two pieces, one goes into his belly – the G, the other travels through Isaac’s stomach and into his intestine, resting just before his Jejunem, this is the J tube. Isaac gets feeds during the day into his G tube, at night his J – to avoid reflux. The bad news is that Isaac’s J tube was coiled in his stomach. Once I stopped laughing at what the doctor had told me I told him that we mostly feed Isaac through his G tube anyway, making this much less of a worry than it initally appeared.
So, we will spend time at Loudoun Hospital on Monday to get a new GJ tube put into Isaac (doesn’t everyone keep a spare GJ tube in their basement??). We considered just putting a plain old G tube in, until he got sick and threw up this morning, presumably from the food in his belly while he is laying down.
Now you have been introduced to Isaac’s Law, a routine chest xray turns up a coiled J tube – comical in and of itself, but add the fact that the J tube shouldn’t coil in the belly and you really have something to laugh at :)

lots of excitemitent!

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We have had more excitement this week!  First – Isaac continues to amaze us (us, including his speech therapist) with his communication skills.  We knew he had some amazing thoughts, and it is wonderful to watch him develop the skills that will allow him to really share with us.  To watch him create full sentences on his Ipad is nothing short of amazing.

As of today, we are two weeks away from Isaac’s next bronchoscopy – a bronch is a way for his Ear Nose Throat surgeon to get a look at his airway and work on anything that still needs fixing.  Our hope is that the surgeon will take a look, like what he sees and proceed with a capping trial.  A capping trial would mean Isaac is only breathing through his real airway, his trach will be covered with tape and he will breathe like a normal child.  If he can do this for a month the trach can come out!  Let me add here, the trach is still in place, so not only is Isaac forced to breathe through his mouth and nose, but he is doing it with a pretty nice obstruction in place – since he now has to breathe around the trach tube in his airway. 

To back up from this point, there are signs Isaac can give us that he may be ready for a capping trial – a major one is being able to wear his Passy Muir Valve (PMV).  This valve covers his trach – it allows him to breathe in through the trach, but forces him to breathe out through his mouth and nose.  Earlier this week I put the PMV on him while he was sleeping, so he couldn’t panic and pull it off.  He was able to wear it (and breathe) for 10 minutes before waking up and pulling it off.  The battle is just that it makes Isaac feel uncomfortable, it is a differnet way of breathing.  Of course, we also have to watch for signs that he is unable to breathe.  He showed us he can breathe when he napped wearing it, and then the battle began!  Today, Isaac finally let his dad put the PMV on – he wore it for a total of one and a half hours tonight!!  This means his airway is still working, and we could actually be capping his trach two weeks from today.  Of course, the bronch and Isaac’s reaction to capping will be the true determination, but we are feeling hopeful :)

Last – I finally got around to checking messages tonight (that happens every week or two!), and we had a message from Isaac’s “wish granters”.  He has been approved for a Make A Wish trip to DisneyWorld – we are booked for October 9th through the 15th.  He deserves this so much.  I almost didn’t look into it, he isn’t an obviously sick kid, and it never crossed my mind.  Once it was suggested several times by a few nurses I decided to check into it.  When I spoke to the organization the first time they pointed out that it doesn’t sound like Isaac has had any life threatening experiences…..  then I realized it.  His trach is automatically a qualifier – if it comes out or clogs (when he doesn’t have the ability to breathe around it) he cannot breathe…..  that sounds pretty life threatening to me!  Once they spoke to Isaac’s doctors they were on board, and it’s been a wonderful experience working with them.  Isaac will be thrilled to take this trip, and we can’t wait to be a part of it with him. 

We are so excited with the progress Isaac is making, and can’t wait to share more good news!

scars….

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Last Friday the tube that has been a part of Isaac since April (the red tube coming out of his chest) fell out…… just like that – it fell out.  Not an unusual occurance, and definitely one that makes us a bit happy, the loss of this tube will hopefully cure some of the infection he has had these past few months. 

So, we took a picture of Isaac’s tubeless chest and posted it on Facebook – kind of a “yay the tube is out” picture.  I was suprised (though not bothered in the least) when several people commented on the scars on Isaac’s chest.  His scars are just so normal to us now, we don’t see them first.  Nobody was negative – everyone just commented on the amount of scarring.

I realized that very little of Isaac is NOT scarred.  Between scars from surgeries, IVs and central lines, and chest tubes Isaac has them everywhere.  He has had two IVs in his head (when he was much younger), if you pull his hair back you can see the first one right in the middle of his head.  His hands and feet are full of teeny little scars from the MANY ivs in them when he was tiny.  His right and left upper arms bear the scars from cental lines, as do his right upper chest and his right upper leg.  On his left leg you can find the scar from his port (which was emergently removed when he became septic and very, very sick a year and a half ago). 

Also on Isaac’s chest/neck are the scars from the stretching of part of his esophagus, the progression of it as it moved down his chest.  There are also scars from the trachea surgeries he has undergone, and the attempts to start giving him a secure airway and get the tracheotomy out of him. 

Then there is his chest/stomach.  Isaac has had so many thoracotamies (cuts from the middle of his back to the middle of his chest) we have lost track – I would guess somewhere around 10 since he had two in a one month span this winter.  That scar is over a deep crevice where his ribs have been cut so many times they are now deformed.  As a result of this deformity (his 4th through 8th ribs are fused together) he has a large lump at the top of his ribcage, that certainly adds to his character.  There were a few surgeries that required Isaac’s stomach to be cut open – leaving about a 4 inch scar down his belly.  The second time it was cut he developed an infection, so his stomach was reopened and allowed to scar on it’s own – leaving a bit of a gnarly scar.

Aside from his thoracotamy scar are the beautiful scars on his upper back, from the “buttons” used to stretch his esophagus.  His esophagus was stretched by placing stitches through the end, pulling them out through his back and stretching them daily.  The buttons held the stitches in place – they are responsible for the esophagus.  In my opinion, they are his most beautiful scars……..

So, there is a history behind the scars – there are memories for each and every one.  Someday Isaac can tell his friends the stories behind the scars (because each part of his life is documented online and in pictures!), or he can make up great stories about them :)   While we have become accustomed to the scars and tend to look past them, they are so much a part of Isaac.  He will have us to tell him the stories of the scars (since we hope he will have no memory of the procedures that led to them).  Isaac will carry a constant reminder of how incredibly amazing he is, and have the evidence to prove it :)  

Scars can be a reminder of horrible times, but they can also be a reminder of how amazing you are and just how far you have come……..