Happy New Year...

...or not so much! I'm trying to keep my promise and update every other day or so. Here is how things are playing out. Maddy never got her second access line in. There was a mix up with interventional radiology and they never got her on the schedule. I asked Dr. Rolf about it this morning and he said he doesn't want to put her through getting another line if he doesn't have to so we are just going to make due with the Hickman she has in her neck now. They can only use it for Pheresis for the next five days but they don't need to give her anything else by IV until after Pheresis is over anyway so they will just deal without an IV at the moment. Then after the five days of Pheresis they will use the Hickman line for any antibiotics they decide to give her before she goes home and for the Thymo treatment. Hopefully nothing comes up in between that and she will be able to get away with just this. She said that she is ok with just getting a peripheral IV at the end if thats all she needs. They have been able to get her morning blood draws from the veins on her hands so far so all is going well on that front at the moment.

Yesterday was not too bad for Maddy. I had to work in the morning and then run errands in the afternoon so she was alone for the day. She was bored but nothing major happened so that was good. My aunt Jane called as I was leaving work and told me the Botts sisters were buying us New Year's Eve dinner! So they wired us the funds and I was able to pick up Taco Bus for our dinner last night. What a treaty! Thanks again mom, aunt Jane, aunt Libby and aunt Susan! Maddy enjoyed her dinner very much. We planned on staying up and taking a walk down to Channel Side to see the fireworks at midnight. But that got busted because the nurse gave Maddy her evening meds and we forgot to hold off on the sleep aid. So by 11:30 Maddy was zonked out. I went down and watched them by myself, which was not the most fun I have ever had but it was a great view. The hospital is located across from downtown Tampa and the channel between them is where the barge full of fireworks is positioned. All they partiers are across the channel on the downtown side near the convention center and Harbor Island so the hospital side was practically empty. There were a few people who drove their cars over to the hospital and jumped out at the last minute just in time to see the fireworks. I'm guessing most of them were residents of Davis Island which is where the hospital is located. It was nice to have such a close view of the fireworks without the crowd. I wish Maddy had been able to stay up for it.

Thats all the good news I have, not on to the not so good news. Today has not been a good day for my little Madelyne. It started ok but early as always with a blood draw at 4 and the doctor in by 6. Maddy was able to sleep through most of that. Then everything started coming along full force by 7:30 and I got her up to eat her breakfast while it was still warm. I picked her up a Chai Latte when I got my coffee and was looking forward to a good day. Then when I got back it turns out they brought Maddy all kings of wrongness for breakfast. But she was a trooper and ate most of it anyway. Within about ten minutes of finishing breakfast she started to feel nauseous and her stomach was in a lot of pain. No real reason of it, she took all her enzymes and her lactaid. She told her nurse that sometimes she just gets stomach pain and feels sick for no reason. They got her some Zofran pretty quickly and that seemed to help with the nausea after about 30 minutes. Again she troopered up and took all her other oral medications while still feeling sick. I don't know how she does it.

While the nurse was getting her the anti-nausea meds and sorting out her tummy the dialysis unit sent transport up to get Maddy to take her down for Pheresis. They said because of the holiday they could not do it in the room like usual and had to take her down with all the other patients. Well I was not about to have any of that! They did that once last time she was here and both Dr. Rolf and I gave everyone what for with both barrels! There is no need for an immune compromised patient to be put in a room full of sick people! Especially when she is feeling shitty! Anyway, I promptly told the nurse that Dr. Rolf gave strict orders for Maddy to get her Pheresis in her room and that she was not going down there. The nurse didn't even blink an eye, she said thanks and picked up the phone and told them to send someone up instead. Didn't even double check it with the doctor! Good nurse!

So thats our day so far. They came up to do Maddy's Pheresis by around 9:30 and she was able to rest comfortably in her bed through the whole thing. She had two different nurses doing her Pheresis, they switched out midway through, and both were very sweet and accommodating of her not feeling well. They did their job like little church mice and didn't let anyone else bother her while she was getting her treatment. It's about 1:30 and she is still resting. I hope her tummy feels better when she gets up.

I'll update again in a few days.