12/05/09

Where to start? This past week has been eventful. Last Sunday, the surgery residents decided Adam needed a tracheostomy because he'd been on the ventilator for almost two weeks. What they didn't count on was my refusal to allow it to be done. I had allowed everything else so far, but knew in my heart that a trach was not the right choice for Adam. I thought a few more days on the vent and he'd be ready to come off. I was right. He was extubated successfully on Wednesday. He now is on the oncology unit. One side effect of everything that has happened to him is that he is very confused and disoriented. He doesn't remember who any of us are. I am hoping that his memory will come back over the next several days.

the week from hell

This week has been horrid. Adam was readmitted Sunday for a leaking shunt. On Monday he developed severe abdominal pain and distension and was vomiting every 5 minutes. He was developing pancreatitis. I couldn't get the nurses on that floor to understand the gravity of the situation, so I pitched a fit and got him moved to oncology, where the nurses actually care about their patients. On Tuesday, he was moved to ICU because his blood pressure kept dropping. Yesterday, his heart was doing wacky things due to a high potassium level. So he got cardiac meds and  was cardioverted. He was also intubated because breathing was getting difficult for him. He's still on the vent today. It is the hardest thing I've ever experienced seeing the love of my life that way. I hope no one else ever has to experience it.

here we go again

Adam is being admitted to the hospital again. Probable meningitis related to the Ommaya. I wish they'd hurry up and assign him a bed so I can get him settled. These ER chairs really really suck after 4 hrs!!

11/15/03

It's been awhile since I've been on here and a lot has happened. The Ommaya reservoir has been nothing but trouble since it was put in. Adam was discharged from the hospital Friday but we are back in the ER tonight, courtesy of the stupid reservoir. He's leaking cerebrospinal fluid out of the wound in his head, a lot of it. He feels like his head is going to explode. He's been to CT scan and had Dilaudid and Zofran. We're waiting on CT results and for the heurosurgeon on call. ER chairs really suck when you're 7 months pregnant! I wish this process was faster!

more issues

Adam's spinal fluid came back positive for leukemia cells. That would explain the headaches he's been having. Tomorrow, he has surgery to place a shunt/port in his head so they can give him chemo directly into his brain/spinal column and draw fluid out to test for the continued presence of leukemia cells. He's freaked out about it. I'm just reaching the breaking point.

Chemo- day 1

Today was Adam's first day of chemo. He had a spinal tap done followed by an injection of chemo into his spine. He'll start his first infusion of chemo in about 30 minutes. He's getting Vincristine, Adriamycin, and Velcade. He'll have to get the other side of his port accessed as well, since they only accessed one side in the OR. His pain is much better controlled, thanks to Oxycodone. He has nausea off and on.

On the home front, I've moved into survival mode. I'm getting rid of the car that has payments on it and considering a less expensive place to live. I'm trying to cut back wherever I can. Mama's tightening the reins!

I am so thankful to have so many people praying for us! Several people have offered to bring us food, for which I am very grateful. We've even had offers of blood, plateletsn and bone marrow! It's amazing how people come together in times of crisis!