Thursday, January 3, 2008
I just put a new picture on and as I was looking through all of them that I had, WOW what an incredible change. Some of the first pictures I have are from when he was on the ventilator and swollen, and look at him now. I can't believe we have come so far when just 10 days ago we thought we might lose him. I can't even begin to explain how grateful we are for this miracle. Elijah seems to settling well in his new room and has become a bit more talkative and is smiling more this evening. We just got him some benedryl to try and help him sleep tonight. He did not sleep a wink last night. I laid in bed with him last night so you can probably imagine how much sleep I got too. At about 4am I finally went out to talk to our nurse because I had been watching him for awhile and he would close his eyes for a few seconds like he was trying to fall asleep, and then open them quickly and have a terrified look on his face as he grabbed the covers. It reminded me of when I've had a dream before of falling and wake up suddenly holding on to the blankets because I felt like I was falling. When I explained this to the nurse, she responded by saying that she has seen this many times with kids that are coming off of the dex (the sedation/pain medication he was on). she said it's not uncommon for kids to stay awake for several hours without sleeping at all. She says a lot of kids will stay up for 36 hours straight. This would have been nice to know during the day so we could have prepared with a nap or something. hopefully tonight will be better. It's better on this floor because there aren't as many bells and whistles and the nurses don't come in as much. We had taken the oxygen away from Elijah this evening really by just not paying attention, and he has kept his sats up great. The doctors are pleased and hopefully even when he gets sleepy, he won't need it anymore. That would be one of our hurdles done in order for us to be discharged to home. As we have talked with the oncologists here, I think we have all decided that we will just stay here until Elijah is stable enough to be discharged to home. We had planned to get him stable enough to transport him via ambulance to Blank to finish up, but there are some glitches with insurance and we don't want to chance having to pay any more than we are going to just because the doctors didn't label something right. If Elijah does really well, the doctors are hoping that by early next week, we could maybe go home. There are obviously a lot of variables that play into this, but that's at least a rough estimate. His bone morrow biopsy and lumbar puncture are scheduled for 11:15 tomorrow morning. he will be sedated and hopefully go smoothly. like Levi mentioned earlier, we are praying for that the bone morrow results will show less than 5% blasts. If not they will repeat this next Friday again and for sure by then there has to be less than 5% or they would have to intensify his treatments even more and his induction period would be extended. He also gets a heavy dose of chemo tomorrow, so probably he won't be feeling well again. he did get sick last night once and they gave him some nausea medication and it seemed to help. They will give that to him again tomorrow before they even give the chemo to try and prevent it, but sometimes they have to repeat the dose after. This was a big step for us today and it's nice to be heading in the right direction, even knowing that we will take some steps back from time to time. That's all for now. It's time to get some shut-eye. By the way, a huge thanks to Jen and DJ for getting some movies for Elijah that he hasn't seen before. He loves them, and so far that's all we have been watching over and over again. Thanks so much!! Love you all!!