we're not in kansas anymore Today Dori got a surprise visit from a good friend who currently lives in Kansas. It was a good surprise and I think Dori really appreciated it. I took the kids to Sea World and we had a blast.
While we were at Sea Wolrd, our friends-the Johnsons-mowed our yard for me. Which reminds me that Dori wants everyone to know that we really appreciate everything people have done for us. We are very thankful and Dori wanted to be sure I relayed that. It has been tough while Dori's been in the hospital but all the help has made it a lot easier to deal with.
Dori seemed to be doing good today. The drug she is on is cytovene and she claims to be feeling better. Tomorrow it will have been in her system 24 hrs and we should know more then. It's hard not to get the hopes up too high but I'm feeling good. Just keep praying and thinking positive.
posted by Dori at 09:57 PM | bookmark this | (0)
any comments?
Friday, May 14, 2004
CMV
We now know what is causing Dori to be sick, it is CMV. What is CMV? Well, it is something that any immuno-compromised person can get (AIDS patients, chemo patients, trans-plant recipients, etc.) Here's another site with lots of info. It can be very serious or mild so they are going to be very careful with Dori. She will spend tonight in ICU, so our pland to go see her in the morning are off for now. I'll be taking the kids to Sea World for a fun day in the sun. I can honestly say that I am so glad to now have a target to shoot at. Even though it's maybe not the best news at least it seems like progress.
The latest No tests today! Dori got the day off from testing today. She had a pretty rough time last night as her fever spiked to 104 and they had to pack ice packs around her to try and bring it down. She says it took an hour to go down 1°-needless to say she's had better nights. She has also started coughing and now the thinking is she may have some kind of pnuemonia. I guess when I first heard that it was a shock but really we don't know for sure and so nothing has really changed since there are no absolutes. That frustrates me but Dori seems to be Ok when I see her. I know that deep down she is probably scared-we all are but everyone's hanging in there. It's real tough on Dori's Mom, I know she's going crazy not knowing what's going on. I'm hoping for some better news soon, that seems to be common theme for these entries lately.
posted by Dori at 10:28 PM | bookmark this | (3)
any comments?
Don't know much
Not a whole lot to report. Dori is doing OK but her fever still lingers and she still has very little energy. She seems to be doing good when I see her but not good enough to come home. The latest test done yesterday showed nothing-good and bad news as there must be something causing the fever. Dr Kapoor wants to remove her mediport (its kind of like a permanent IV connection in her chest if you don't know what one is) as they are common sources of infection-even though they have tested for infection there and saw none. So if they can schedule her surgeon they will do that today. Of course Dori is tired of the tests and guesses, etc. It's frustrating not knowing what is causing the fever and low-energy. Plus this is the first extended hospital stay for her in years. We are hoping for the best but starting to humker down for a long battle. I have called in ground support in the form of my grandma who will be staying with us next week. Even if Dori comes home she will need lots of help. We have had great help so far but there is nothing like having someone on-call 24/7 which is what we will have next week. Better days ahead.
Today was a big day. At one point I felt that Dori wouldn't be with us much longer and then when I saw her tonight she looked as good as she has in days and I thought she had turned the corner and would be home soon-and well! So I really don't know what to think. She has felt pretty good all day but the fever still lingers although it is not real high. All the test they have done have not shown an infection anywhere so the source of the fever remains a mystery. We talked with Dr Kapoor and he was miffed as well. He hopes that the worst is over and that Dori will continue to improve. That is the hope, but as today has shown us..things can change pretty fast. I'm pretty worn out but I was real happy to see Dori up and moving around tonight and talking with Kapoor was helpful too. The best thing was that the kids got to see Mom for about 30 minutes and they were happy about that.
This will go down as the worst Mother's Day we've ever had, hands down. Not only was Dori still in the hospital, but the head nurse wouldn't let the kids in to see Dori. The official policy of the area where she is is nobody under age 14 allowed. But two days ago we were able to take them in wihtout a problem. Today, Mother's Day, they wouldn't let tham up. So I got to say hi for a minute and then took the kids home. Luckily they were upset but not as hurt as Dori. She said she cried some but overall today was a day of progress. She didn't run a temp until real late in the afternoon and tonight she ate half a hamburger and has not been sick. So maybe the latest drug change is finally working. Yesterday Dori was feeling real bad and talked-for the first time-like she didn't think she would be comming ever. Needless to say that got me pretty upset. But today she's alot better and Dr Kapoor has assurred her that now is not her time. So, we'll hope that Dori can come home this week. She has an infection specialist working on her case now and hopefully he can isolate the problem and fix it. The fact that Dori is eating better and was fever-free for most of the day is a very positive step.