Maddy got out of the hospital today. It seemed almost too easy to be true. Doc came pretty late in the morning, but said he was gonna send her home. She was all packed up and out by a little after 1:00. The is still coughing pretty bad but is very happy to be home. Hopefully getting real food and being comply at home will help her heal quickly.
Thanks again for all the prayers. Please keep them up as she continues to recover and gets ready for her final round if IVIG in early July.
Maddy has had a pretty chill weekend. The ribavirin treatments were finished Friday night. Saturday they took Maddy off the IV antibiotics and switched her to oral. Today they said they want to run a few more cultures and they will send her home on Monday. So hopefully she will be home tomorrow. But we know better than to get our hopes too high.
She still feels pretty bad. I think she feels a little better because as Patrick put it, "when you ask her how she feels today she says ok. Yesterday all she would say is, I feel like death" Ha Ha, this boy is gonna fit right in!
Melissa visited yesterday afternoon for a good long while. I came by last night and took Maddy for a walk along the water. It was cool because they were doing fireworks off Harbor Island just as we got outside. I tried to snap a pic but failed. I did get a good pano shot that you see at the top of the blog.
That's about all. Hopefully she will get out tomorrow. I have to work but Patrick is here with Maddy's car so he will be able to get her home when she gets out. It's so nice that she has a good boyfriend to lend a hand.
Maddy found out today that she has a bacterial infection as well. That means IV antibiotics to knock it out. So they will keep her in hospital for the weekend and into next week. Hopefully she will be able to do home IV's and not be stuck here the whole time.
She has not had a very good stay do far. These infections are kicking her butt pretty good. She is coughing lots, like pre-transplant amounts of coughing! Her O2 sats are down even when she is just sitting around. So she is on oxygen all the time now. All the coughing has given her a permanent headache, not to mention how much her body hurts from it all. She asked the doc if he would up her pain meds and he said no. In his defense I'm sure he doesn't want the meds to effect her breathing. She is having a tough enough time as it is.
The other bad thing is, as always, the food situation. Not only is the food crappy, they have not been very consistent getting her meals to her. When the ribavirin is going they put a big "NO ENTRY" sign on her door. Nobody has been following up to make sure she got her food after the treatment was done. And because of all the pain and lack of sleep she has been pretty out of it and didn't bug them about it either. By the time I got here today she didn't even really know what day it is. Poor kid.
She has perked up a little since I've been here. I talked to her nurse about the stuff and we should be back on track. She got a shower a few minutes ago and I think that made her feel a little more human. The last dose of ribavirin is tonight at 8PM, so that's a bonus! Patrick has been great and only left her side long enough to go pick up his paycheck today and bring her some dinner from Panera. He's a good egg! I'm glad Maddy is happy with him.
I don't have any pressing work over the weekend so I should be able to hang out here more and make sure everything goes smoothly. At the very least I'll be able to get her some good food more often. Thanks again for the prayers.
I stole the picture above from Maddy's Facebook. They stick her in a tent with a big blower/filter unit while she breathes the ribavirin. Have I mentioned yet the medicine they are making her breathe for two hours at a time every 8 hours is so toxic that if you have contacts in while it's being used the droplets of this stuff in the air will fuse the contacts to your eyeball?!?! Yeah, there is that!
Anyway, Maddy is handling it like a pro as usual. She is super tired because they wanted to start her in this med as quickly as possible so her first dose was at 2AM. So her schedule is 2AM, 10AM, 6PM. And it starts all over again. Each treatment takes 2 hours, plus 15 min or so of set up and year down of the tent, so that's about 7 hours of that treatment each day. Then she has to deal with all the in and out traffic of nurses and doctors. I think she got a two hour nap or so this afternoon. It's a little after 9pm now, hopefully she will be able to get a little sleep between now and the next ribavirin at 2.
I came out a little after 6 when they kicked Patrick out for her ribavirin and took him out to Pannera for dinner. Then we did a little grocery shopping for Maddy. We are lucky because her room already had a fridge when we got here. So she is stocked up a little bit with juice and snacks now. The doc said the only plan right now is to do the ribavirin and go home. Hopefully that means she will be out Saturday or so. She is going to chat with him tomorrow about getting that IVIG treatment she couldn't get at the beginning of the month because her insurance was being weird. It will be good if they can get that out of the way while she is stuck here anyway.
Thanks for all the prayers. I will probably not update again for a while unless something weird happens so don't worry if you don't see anything.
Maddy started feeling pretty bad yesterday and running a very low grade fever. She kept an eye on it and when she didn't show any improvement in 24 hours she called the doctor. They had her go in and do a switch test which came back this evening as a viral infection they want to treat in the hospital. So we checked in through the ER around 8:30. Now we are waiting for the orders to get in the computer so we know what the plan is. As soon as I know that i'll update more...
It's 10:30 and we still don't know what the heck the doctor wants to do. The nurse is still getting all Maddy's info into the computer. We are also waiting on the IV access team to come put Maddy's line in. So far there has not been any talk about needing a large access point in her neck this time around.
11:00 and Maddy is getting her oral night meds. Still waiting on the IV team to come access her. Doctors orders so far is just for ribavirin every 8 hours for 9 doses. Starting at 2AM! Hopefully that will be all she needs to get rid of this virus!
So that's 72 hours. Hopefully that means she will be out in three days. If you are wondering what ribavirin is check out the blog from last time she had it.
Ago that's what's going on. It's 11:30 so I'm going home now. Ill post again tomorrow after work.
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