New Blog for Nathanael

We recently started fundraising with COTA to cover Nathanael's medical expenses, so updates about him will be on his new blog from now on: Please check out the blog, pictures, and opportunities to help, and feel free to pass along the link to others. We appreciate your concern!

Wednesday, September 16, 2009


On Monday, we experienced Nathanael's first IVIG infusion. Just in case you've never heard of it, IVIG stands for IntraVenous Immune Globulin. Several aspects of that make me uncomfortable, of which the name is only one. Anything called "globulin" just sounds nasty, like trolls and elves live within it. It's also considered a "blood product," which sounds awkwardly futuristic and reminds me of the movie The Island.

Anyway, IVIG is essentially donated antibodies from roughly 1,000 people that are then given to those who suffer from immune deficiency diseases, like Nathanael's WAS, as well as autoimmune disorders like MS. Perhaps you've heard of people going and donating plasma. I've heard of it but I never knew what the point was nor did I understand how it was different from donating blood. Now I know. When people donate plasma, it's used to make IVIG. For 21 days, the shelf life of IVIG, Nathanael has antibodies to fight against illnesses that his body is unable to make for itself. If, for some reason, a bone marrow transplant wasn't an option for Nathanael, he'd be on IVIG treatments for the rest of his life.

We went to the "special procedures" clinic inside Children's Hospital in Dallas. The waiting area was a little scary as it resembled an ER waiting room for kids but they shuffled us off into a room rather quickly. Once inside a space roughly the size of a sitting room or a study, with its own sliding glass door nonetheless, a doctor brought in a machine called a "VeinViewer". In all honesty, this was cool. It shined a green light on Nathanael's hand that basically created a map of his veins and showed them where to put the IV line. We each stuck our hands under the light and let the record show, I've got wicked veins.

In retrospect, the stick was the most nerve wracking experience of the entire day. Nathanael's veins aren't great. I don't know if that's the case for newborns or just him. Thankfully, our immunologist had the "IV Team" come and start the line. They are used to dealing with difficult insertions and were able to get it on the first try. Secondly, there was very little bleeding from the stick which isn't a small concern with a child suffering from thrombocytopenia (low platelets).

Otherwise, it was a rather relaxed 3 hours. That's how long it takes to infused it into his system. From what they told us, the time taken is meant to mitigate against any possible side effects from the infusion and from the looks of things, there were none. Once the infusion began, Bree held Nathanael and we talked, read magazines, and I played with my cell phone a little. Bree was also able to make a dent into our thank-you note pile. We don't know how many of these infusions he'll need before his transplant or if he'll need any once it's been completed.

One thing we are quickly coming to grips with is just how expensive this is all going to be. The blood test on me, Bree, and Jamison to see if we were matches for Nathanael was $5,800. $5,800 for three blood tests and a 20 minute visit from two doctors and two nurses. Never in my life do I remember hitting our "max out of pocket" on our insurance, even when Bree had to have chemotherapy. It took 4 weeks to accomplish that feat once Nathanael was born. I was told that the total cost for a bone marrow transplant is in the range of $500,000.

I feel fortunate and humbled that we have the health insurance that we do. Our policy has no lifetime maximum benefit. In my conversations with the finance people at the hospital, I was told horror stories of people having maximum benefits and losing their homes. I have to admit that I feel a little guilty but at the same time grateful. We have some sizable bills to be sure but for those with eyes to see, there are already a myriad of blessings to be found in the midst of a situation I wouldn't wish on anyone.

Our plans for Cincinnati are coming together. We have secured an apartment in the Oakley neighborhood. That's about ten minutes from the hospital. We're still working on transportation but at least we have a place to live. The initial appointment is on the 30th, two weeks from today.

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