03/26/10 Reflection on Life

Another Friday has come upon us and Eli has been handling the blood transfusion without any complications. I spent the night at home with Ian and Obie last night so I missed the first round of infusions but I made it into the hospital this morning for Rounds and Eli is looking very pink. I think this is one of the few times I've felt like we made a good decision in supporting Eli. It's so hard to know what the right decisions are and even though we have a lot of information at hand we don't know how we're ultimately impacting Eli's life. After we made the decision to give Eli blood the doctors decided to give it to him very slowly over a 24 hour period. They have scheduled three pushes of blood with each push over roughly 4 hours. After talking to the nurses a little I've come to understand that the approach they've taken is a very conservative one but definitely warranted given Eli's overall health. In other words, he doesn't need the blood all at once so why create a bunch of undue stress on his system by giving him a big push of blood all at once.

The morning went smoothly and slipped by quickly. Patricia and I left the hospital around 10:30am to attend the funeral of our friend's Mom. We arrived at 11:00am, sat through the mass, attended the lunch after mass, and departed at 1:00pm. The funeral was a little more difficult than I had anticipated. I worked with Kathleen and her brother Jim for close to 10 years at Shurgard. It was hard to see them in mourning and it was difficult to wade through the emotions a funeral brings up when you know the people involved. Jim wrote a touching eulogy for his mother but it was clear that watching her suffer, in pain and fear for the long months prior to her death, had created a lot of anger and resentment toward God. Jim has always been a little sarcastic but his pain and anger toward God was fairly clear to Patricia and I who have gone through a similar process of questioning our faith so many times in the last two months. By anyone's account, their mom, Nancy, was an amazing woman. She dedicated her life to helping single mothers and she was active in the church for well over 35 years. This was on top of running 6 miles a day (every single day), being an active participant in her tennis club, and raising three kids, mostly as a single mother herself. After the service Patricia and I talked a little about Nancy and what we knew about her. We certainly didn't know her as well as a lot of people in the church, the place was packed with hundreds of people, but the remarkable thing was how she lived her life with dedication, compassion, and unconditional love for her children and those around her. We'll definitely remember this woman and the lessons we've learned from her and if God grants us the wisdom we might even have the opportunity to apply them to our own lives.

Back at the hospital they were just wrapping up Eli's second round of transfusions when we returned. Patricia stayed for a few more hours but it was her turn to be home with the boys tonight so she left a little before 3:00pm. I spent the rest of the afternoon doing some work. The only notable interaction with the medical staff was when the Attending dropped by for a quick talk. I asked him to follow up with neurology to get his take on the EEG results. I've learned to get information from different sources as often as possible even if you're getting the same information several times. It helps me rationalize what I'm hearing and sometimes different people will explain the medical jargon in a different way that gives us a better understanding of what's going on.

In terms of the EEG, my take away was very positive. Eli is improving. Specifically, they noted some "slowing" of the brain waves in Eli's first EEG and they didn't see any "slowing" this time around. There are still no indications of seizure activity. Eli's brain wave patterns have advanced but they are still a little behind where they think he should be. This means there doesn't appear to be a degenerative or progressive condition. I had also asked if we could "infer" that Eli was "catching up" a little and the neurologist said yes.

On the topic of dysmaturity, here is what I've learned:

Definition: Of, relating to, or characteristic of faulty embryologic development, often leading to structural and/or functional abnormalities. The failure of an organism to develop, ripen, or otherwise achieve maturity in structure or function.

The definition is fairly generic so you need to have some basis for understanding how they review EEG test results. It's probably easier to understand in terms of statistics. Over time they develop standards by performing EEG's on otherwise "healthy" children at different points in time. Once you have enough EEG's for, say, a 42 week old baby, you can form a bell curve using the results. After they test Eli they would compare the results to the standard bell curve and see that Eli's brain waves are several standard deviations on the low end. They can then back track through "younger" looking EEG's until Eli's result falls within the normal range on the bell curve to help quantify how dysmature his brain is functioning.

While I don't have the exact numbers I think we could assume that Eli was something like 3 standard deviations from the norm at 42 weeks and now he's like 2 standard deviations from the norm for someone his age. I'm totally guessing at the numbers but I think it works something like that.

Based on the brain waves and the fact that Eli has issues with his respiratory drive and swallowing the doctors feel this is a neurological issue of the central nervous system originating in the brain. The long and short being they don't think Eli brain developed exactly the way it should have but they can't see anything wrong with the brain structurally through the MRI. That doesn't mean there isn't something structurally wrong with his brain but rather we lack the technology to see it. There's also the possibility that it could be an unknown or yet untested genetic issue. Finally, it could be some issue with how the brain communicates and sends electrical impulses back and forth but they think that is unlikely since Eli is otherwise a healthy and growing baby.

Later this evening they do the third and final push of blood and Eli is fully transfused. He looks fantastic! He's nice and pink so all we need to do is test his hematocrit level and take out the IV and we've made it over a major hurdle. They plan on testing the hematocrit on Monday and if it looks good the IV can come out. Stay tuned!