wumph

So yesterday (Monday) afternoon my stomach was not feeling quite right. I held it together for Larsy, but by the time Andey arrived I was ready to lie down. In the hospital room I dozed with a basin nearby for a couple hours. Woke up, Andey's cousin Jean was there, Lars was mostly miserable.

While I was showering Andey & Jean had a good visit with the pediatrician who works with Andey's hospice, who had some excellent ideas & was going to make some phone calls on Lars' behalf.

Then our friend Chuck Berde from Pain Service came to visit for almost an hour, and it was so wonderful to see him. He's a brilliant, compassionate, sweet, dear, savvy man with a heart of gold & an intellect to match. He seems to know everyone. He listened to all the details & synthesized them & made some great suggestions like something Lars could take to counteract the toxicity of depakote, how to advocate for more communication between specialists @ the hospital, and other kind of tests we might want to run. He asked some excellent questions, and supported putting Lars on a little bit of morphine when he is in severe pain, rather than codeine.

When I left to go pick up Joa, Lars was screaming and Andey had just given him his first morphine. She called while I was on the road & said that within ten minutes he had felt much better, and had been able to eat a big meal.

Lars was then awake until 2:00 in the morning & according to Andey, relatively wild. I'm sure our roommates were thrilled about that. Then he woke up at 6:15, and was sobbing hysterically by 6:20. 6:30 they gave him a little morphine & it didn't help. 8:15 they gave him a little more, and that seemed to chill him out. Last I talked with Andey she thought they both might be taking a nap soon.

So I left the hospital with intestinal cramping, nausea, and the runs & promptly threw up. How pleasant. Drove to get Joa @ his friend's and needed to stop to find a bathroom every 15 minutes or so. By the time I arrived to pick Joa up I was really not feeling well. The last leg of the drive was like hell as I had become impossibly cold and feeling sick. When we got home & I tried to get out of the car, I was shaking so much I could barely walk, had major trouble getting the key into the door, and was sobbing and barely comprehensible. Poor Joa was freaking out because it was clear that I was utterly unable to take care of him or myself, and his other mom was in the hospital with Lars.

I managed to call Denise, only because she was on speed dial--I couldn't have actually dialed--and she threw clothes on & flew over here. I called Andey who then called our neighbor Sarah, who came over for the minutes it took for Denise to get here. She helped me climb into bed & piled blankets on top of me. My fever had spiked so high so fast that in clothes, fleece jacket with hood over head, 5 quilts & a wool blanket I was still freezing, shaking, and had goosebumps all over my body. It was remarkable in that it was just exactly how I went down when I got pneumonia when I was pregnant with Lars.

Of course I was terrified that I would be sick & hospitalized for a week, like I was then, and that I'd be unable to break the stunningly high temperatures. I took several tylenol & an ativan, drank the lovely tea-in-a-sippy-cup Denise made me, tried to do very deep breathing as long as I could (to prevent pneumonia), employed my best visualizations & relaxation techniques that I mastered during my hysterectomy this summer, and went to sleep knowing Andey was taking care of Lars & Denise was taking care of Joa.

Around midnight I woke up feeling hot, but not horrible. I was able to get up, change into pj's, remove all but one quilt, take some more tylenol & go back to sleep. When Denise came in to wake Joa up around 7:00, I woke & didn't feel that bad. After and hour or so I was actually hungry.

I am stunned & delighted by this quick turnaround.

Andey called & doesn't have enough of Lars' vigabatrin, which is his seizure med that is not FDA approved, so we've ordered it from overseas & paid for out of pocket since 8/04. So I need to get dressed now & drive in to Children's with the med.

Sounds like several people are coming to help us out today: Jill around 12:30, Suzie 2:30-4:00, CBT 7:00-? Thank you all so much for your kind thoughts, for reading, for the food & gits people have brought, for taking care of Abbykyns (our corgi) & Joa, for visiting, for sending emails, making phone calls, leaving messages, making comments on the blog. The fabric of our support system is strong, and that is so incredibly important. I am deeply moved and equally grateful.