Tuesday, August 29, 2006

Illuminating? No. Eliminating? Hopefully soon.

The high-level summary of today is that after six hours of ultrasounds, catheters and blood samples, the tests showed no identifiable serious health problems. His spleen still has some punctates (very small lesions), although they haven't increased since two weeks ago, and the spleen itself is actually smaller than last time. Liver, stomach, etc... all organs look good.

Here's the confusing part:
  • He had fever over 103 degrees each of the past two nights. Went to the pediatrician on Monday and was measured with 102 fever. Had blood taken and showed no abnormal results, even for white blood cells. How can that be when his body is clearly fighting something?
  • Today had more blood taken and still no abnormal blood results. His lymphocites were a little high (these fight viruses), but they were very low on Monday... and the picture gets murkier.
  • So it doesn't look bacterial, because the antibiotics haven't helped. It doesn't seem viral, because the lymhocites are too low. Not fungal, because his condition hasn't worsened over the past six weeks. He doesn't seem sick enough for the serious non-infectious diseases like leukemia, hepatitis, and others I won't name. But we're testing for them now anyway.

Anecdotes of the day:

  • During the ultrasound, Jack was laying on his back while the technician moved the probe around his belly. He was fussing a little, but trying to watch Sesame Street on the television in the room. All of a sudden Elmo came on the screen to sing a song, and Jack started doing this awesome shoulder/hip shimmy thing. The technician asked, "Is he dancing?" Yep, he was.
  • During the catheterization to get a clean urine sample, he kept pushing the tube back out against the nurses. The boy's got some good PC muscles. One of the nurses said, "Whoa, this boy's strong."
  • After the tube of pain, Jack got dressed again and walked around the little exam room. When he spotted the doctor (a small European woman) he stopped, looked her in the eye and did this weird hunching thing with his shoulders. The doctor asked, "Did he just size me up to get revenge later?" I think he did. Given his strength and lack of fear, he probably thinks he'll be ready to take on the whole hospital by his second birthday.
  • Our phlebotomist, Reggie, was super cool and nice. He was voted "Super Star Employee of the Month" in March, and I can see why. When he came in to take the blood, he had 12 empty vials with him. I'm not exagerrating. Jamie and I looked at that and asked, "How much blood is OK to take out of a 24-pound child?" Reggie shared our concern and called the doctor. He only filled half the vials today -- we'll do the other half on Thursday. He filled those six vials in about 30 seconds.
  • TCH is an amazing place that people come to from all over the world to have their kids treated. And in general it's a positive, happy place, with the architecture and people really working to make it so. But there are still some really, really sick kids there. After six hours in the building, you overhear a lot of conversations about "Billy's epidural" and "Taylor's transplant". Can't help but have the conflicting emotions of sadness for them, and gratefulness that Jack's illness seems far less serious than the majority of patients there.
  • Samantha stayed with friends again (thanks, Burns family!) while we spent the day at the hospital. So many people have stepped up to help us during this time and we truly appreciate every single gesture. I felt very strongly about being with Jamie and Jack today and once again someone was there to make it possible.

Short-term plan:

  • Jack will go to the pediatrician again tomorrow to have his TB skin test examined (it looks fine) and make sure everyone is caught up and on the same page. I doubt we'll do a lot more tests tomorrow, but don't put too much value on my medical forecasts.
  • Thursday we'll go back to TCH to finish Jack's blood tests. These are the biggies (leukemia, HIV, etc...) that we're almost positive aren't the problem, but it will be nice to elminate them as possibilities (hence the title of this blog post).
  • That will make four days in a row this week of going to doctors. We may take Friday off for good behavior. As long as we can behave.
  • I noticed that some of my muscles (trapezius, glutes, neck) were really sore all day today. And I haven't been to the gym in six days. Stress and its impact on the body are so fascinating. I have a whole blog post ready about that topic. For later.
  • If I had the doctor write me a prescription for "two week vacation, full body massage and 12 hours of sleep per night", do you think my company and the health insurance company would go for it?


hardrox said...

Thanks for the detailed update, Michael. These posts are probably very theraputic for you, and those of us on the sidelines appreciate you letting us read them.

Jack is a trooper, plain and simple. Hopefully his battle will be over soon.

FishrCutB8 said...

Man, I alternate between bummed for the situation and happy for the stregth you and your family have, and for the courage of your little guy. Some day, years from now, he is going to be the toughest guy on the planet, and we'll know why.

Hang in there, brother, and give your wife and daughter a squeeze...or two.

Redlefty said...

Thanks, Rob and Greg. I'm about to post an update in a moment.

Another friend mentioned today that perhaps Jack is just the first of a generation of super-mutant children who have a naturally high temperature. I could be the father of the first real X-man.