Category Archives: Fistula

confirmation

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Sometimes that’s just what we need…. a little confirmation. The last time Isaac had a recurrent sick was when he had a leaking esophagus and holey lung – not an experience we want to repeat. With his recent sicks we all (meaning me, his dad and his favorite pediatrician!) started to get worried.
We decided to get Isaac in for an esophagram – a way to check for leaks. The good news is – there are still no leaks in his esophagus!! There have been some sleepless nights this week as we have all thought about this.
As we keep thinking about it we are leaning more and more towards Isaac just having aspiration events – something we knew could happen as his airway was manipulated. Not the best news, but certainly NOT the worst!
In light of all of this, Isaac has continued to remind us that he is still the most amazing 4 year old in the world. Yesterday I called him I,I – his chosen name for himself. He responded by telling me “No, I-S-A-A-C”! When this kid isn’t kissing us he is dancing, when he is not dancing he is singing…. he is just so happy and resilient. Over the past week we have had numerous dance parties, lots of singing in the car, some serious spelling, and lots of laughing….. it is therapeutic to be around Isaac.
For now we enjoy life – through Isaac’s eyes it is so much more enjoyable!

What Healthcare Reform Means to Isaac

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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

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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