Happy FIFTH birthday!

Tomorrow Isaac turns 5 – FIVE! It seems like he blows our minds just a little bit more each year, this year has been no different.
I remember 5 years ago, being in the hospital on bed rest, well into my second week – not having any clue what would be happening just 24 hours later. Isaac called the shots from day one, he arrived with a fight in him that no doubt has saved his life more than once. We knew that night that we had a special little boy, we never imagined how special.
Tomorrow we honor a little boy who has overcome odds, seeming insurmountable odds at times. He has shown us what it means to love, and what it means to fight. Ultimately we have a child who may physically be 5, but is wise so far beyond 5 years. His empathy and love have taught us how to be better people, and his fight has shown us that we have an ability to fight harder than we ever imagined.
Birthdays around here have become a pretty big deal, as we now realize how much we have to celebrate. There were times when we didn’t know what would become of Isaac – when you bring home a 13 month old baby who has no ability to even sit on his own the future seems bleak. The things Isaac has accomplished since then are mind blowing. He never stops exceeding our expectations.
This year Isaac is sick the night before his birthday, which means he’ll probably still be sick on his birthday. I’m sad that he won’t be at school to celebrate his special day, but our goal is get well enough to enjoy the Fresh Beat Band Concert Wednesday night, where his buddy Shout will once again be leaving him backstage passes – what an amazing gift for this amazing boy!
The birthday fairy is about to get to work decorating above the birthday boy’s bed, then she’ll spend some time remembering the very scary night he was born and whisper a few sweet nothings in his ear….

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We’re on a mission

I recently sent Isaac’s story with the group Organizing for Action (OFA), a group that is, in part working to support the Affordable Care Act. I know that Isaac’s life was saved, in part – by the Affordable Care Act, and I know this will continue to impact his life. I felt like it was time to start telling his story, and using it to support something we feel very strongly about.
Today, I ended up visiting a Congressman’s office, Frank Wolf represents our district. He has also voted repeatedly to block or repeal the Affordable Care Act. I went with a member of OFA and sat with one of the office staffers. She listened to Isaac’s story, and oohed and ahhed at all the right moments – but she clearly didn’t get it. She couldn’t lose focus on the fact that Isaac does have insurance – and he does.
What I couldn’t make her understand was that if we hadn’t been really lucky and if I hadn’t come off of a recent leave of absence and been eligible Isaac would have gone a year WITHOUT health insurance. An entire year – we all know just how much can happen in one month of Isaac’s life, can you imagine a year?? We were lucky, and we know that.
We also know that even though Isaac has insurance, and did have it all along, he benefits from Affordable Care in other ways. Isaac has a laundry list of pre-existing conditions – which would have made him ineligible for most reasonable insurance plans.
We learned the hard way about lifetime maximums (after a health insurance company decided Isaac’s lifetime of care ended at 13 months). He no longer faces lifetime maximums – as I pointed out to the not so interested staffer I spoke to today, Isaac has problem come close to using a SECOND lifetime of care at this point.
Now that we have taken a step towards getting Isaac’s story out there and supporting something so important to us we are feeling more inspired than ever.
Isaac needs this law, he always has.

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Minnesota….

Since Isaac is in Minnesota, and I keep promising to write a post about how he originally ended up there I figured this was a good time to do it. First, baby Eli and mama are missing the big boy like crazy tonight, and hoping he’s missing us just as much 🙂
So, here is the story….. When Isaac was about 2 and a half months old his nurses noticed him struggling a bit to breathe, and as time went by it got worse. They slowly started talking about trach potential, and then became a sure thing.
On a Friday night we were told Isaac would have to be trached, which at the time was the scariest proposition we had heard. Our visions were dire. Needless to say, the evening this was shared with me was emotional. In all honesty I was a crying, hysterical mess as I rocked my baby and envisioned this awful like ahead of him.
As I cried, and rocked, his evening nurse came on. Per NICU routine she was brought in and introduced to me, and she told me this would be her first time ever taking care of my Isaac. She also told me that she was going to come back and talk to me after I’d pulled myself together (4 hours of crying does a number on a girl’s appearance!).
Bear in mind, this nurse had never worked with Isaac directly and the entire time he was in the NICU this was the only shift she ever had him…. divine intervention? You may think so as you read more 🙂
When Patty returned she said to me very matter of factly “you need to get him out of here”…. huh?? After a second of thought, I got it. I knew there was a program in Minnesota for building and esophagus, but thought that when the original surgeon retired the program disappeared, it turns out I was wrong. I asked her if she meant Minnesota and she said she did. She went on to tell me of several success cases she knew of that had gone from that same hospital.
That was all I needed, I came home and very seriously told my husband that we were going to Minnesota. Of course, there was a lot more to it than that, but we ultimately got there – and the rest is history.
What has always amazed me is that in the one shift that Patty worked with Isaac I happened to be there in the evening (not a time I was typically there) and I happened to be having a nervous breakdown that encouraged a life changing conversation.
I try not to think about what would have happened if Patty hadn’t worked that night, and if that conversation hadn’t taken place…. because I KNOW that making that move saved Isaac’s life.

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note to self…

… never brag about how great Isaac is doing, he will make you regret it! On occasion Isaac aspirates, the food he has in his stomach (most likely formula) comes up his esophagus and finds it’s way back down his trachea – towards his lungs and out of his trach. This happened last week. One big risk when Isaac throws up is that he can tear his esophagus, so we panic a bit when that happens.
He seems to have come out of it fairly unscathed, but typically an episode like that is a sign that Isaac needs to have his esophagus dilated. The awesome news is that it’s been about 3 months since he’s needed a dilation, and at one point we were doing them every 4 to 6 weeks! We decided to play it safe and get him to MN to see Dr. Hess for that dilation.
Of course, we decided it on Friday and scheduled him for the following Wednesday- 5 days later! This left us to find airline tickets, and a place to stay, and pack (including tons of medical supplies!) and work out all of the little detail in FIVE days.
It looks like we did it, tomorrow morning Isaac will head to MN with daddy and an awesome friend of daddy’s who’s helping us out on this trip. We are hopeful that Isaac will have an uneventful dilation and will be back home on Thursday.
We are still so proud of how brave and strong he is. He handles all of this in stride, and helps us keep our perspective with all of it.

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Philadelphia

Isaac had a good week in Philadelphia, he met A LOT of doctors and had a few tests. As usual, he made a great impression and was already pretty well loved when we headed home Friday. Three of his consults with surgeons were on Wednesday, and they seemed to all feel the same way.
I met with Dr. Campbell (the creator of the rib lengthening surgery we were hoping to use) on Friday. He had just met with the team that evaluated Isaac – and they agreed that the risks outweigh the benefits when it comes to this surgery right now. In all honesty, we are relieved. As much as we felt this surgery would be the step Isaac needs to comfortably lose his trach, it is a very long commitment. Kids get rods replaced every few years, and the rods themselves have to be lengthened every 6 months or so. Add to that the risk of infection and reaction to the rods, and we were pretty uneasy with it.
We took Isaac to the team in Philly because they are the best at this, and they work as a team. We liked the idea of lung doctors, neurosurgeons, orthopedic surgeons and general surgeons working together. We were so impressed by them. As we talk Dr. Campbell explained that their lung doctor has ideas about others ways we can work toward losing the trach and he is contacting Isaac’s doctor here.
Dr. Campbell wants Isaac back in 9 months to see how he is, and discuss further steps. He explained that this decision could change, if the ideas they offered don’t change Isaac’s status in any way, we may need to discuss surgery.
So – why aren’t we doing this surgery now? It’s kind of for the same reason we put off even looking into it for a while. Isaac’s right lung is damaged, repeated surgeries have not only left it scarred, but also probably pretty well adhered to the bottom of his fused ribcage. By forcing the ribcage to grow and stretch we could really damage that right lung more, which is the opposite of what we are trying to do…. which is scary. We find ourselves in a place where what we need to do something more, but the something more could really hurt him.
We plan to get copies of the studies they did in Philly and discuss those studies and the ideas of the Philly doctors with our local doctors and see what we can come up with.
Isaac has never been anything short of amazing, we know his trach will come out, we just need to work a little bit harder to make it happen!

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