Thursday, February 9, 2012


Update: We are scheduled for the shunt at 1 p.m. tomorrow. Today, Eli's white blood cell count is still too low, so they are giving him shots to raise the number for surgery. He will have another lumbar puncture first thing in the morning to make sure that there is no infection in the spinal fluid before going into surgery. Also, they do not want him missing any of his radiation treatments, so we ...took a little field trip via ambulance to St. Jude for that today and again tomorrow. So, tomorrow, he will get his shot for the wbc, then lumbar puncture, then go to St. Jude for radiation, then back for a ct scan, then to anesthesia for surgery, then about a 20 minute shunt surgery, then pick out a big Lego thing on the toyrus site, I guess is what we will top it off with. He is a little upset with us b/c he thought that getting his hickman line meant no more needle. He is noticing all the needles and letting me know by screaming his head off. He is not eating more than literally two very small bird bites of anything at each meal time, and is still throwing up in the morning. I want to make sure that everyone understands that we are so thankful for this procedure and for the skill of these doctors. We are glad that we did not do it automatically with the first surgery b/c we would have always wondered if he needed it, and we have clear indication now that he does. The surgery itself is quick, and the placement of a shunt will help him move on to the rest of his treatment. So, it is the long-term implications that are worrisome, but we will deal with any of that if it ever happens. He would not be much of a testament if the road was easy. I'm including a picture of Eli with his new haircut and for once a smile on his face. He is in good spirits, but he said his tummy feels sick when thinks about tomorrow. With radiation they have to shave spots on their heads, which you may have noticed in other pictures. He has always wanted a mohawk, so I told him I would do it. If I had not been giving him this haircut I would not have noticed the leak. If we had not chosen that I be the one to come back for another week, it is not likely that Vic would have noticed it at all... they would have caught it at clinic at some point, but the exposure to germs was great when it was opened. So, I wanted to leave you tonight with this fun picture b/c I want you to know that we are meeting this challenge with a positive attitude and we continue to be thankful for our blessings.

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