As I was sitting there beside Abby's bed at PSL watching her put the pulse/ox on the stuffed poodles paw I thought, "Man, I haven't had to be here for a long time and boy am I glad." Actually sometimes I like it there. With all the beeping, tubes, people coming in and out, and even the little chair that turns into a most uncomfortable bed... still, I feel comforted and safe. I guess it makes sense, you're in a hospital, state of the art medical technology, trained staff, lots of good drugs.
It also brings up lots of emotions from the the past and makes me reflect on the last 2 plus year of our life. Especially with surgery. This one was a bit harder than most of the other ones except maybe the eye surgery. She didn't feel good at all when she came out and all she wanted to do was blow her nose. Obviously she couldn't do that. It took her a couple hours to stop crying, man that was hard. Part of it was that she was so tired. Once she took a little cat nap she was much better, that was at about 3pm. Tiffany left once Abby had calmed down and went back home to relieve her mom who was watching Anna and Lily.
The overnight in the hospital was pretty good. Abby woke up a lot during the first part of the night and went through 2 boxes of Kleenex dabbing her nose. It bleed a lot at first and by midnight it was pretty much done. Speaking of bleeding, she did have to have 3 transfusions on Thursday. One during surgery of platelets and one more unit of platelets after surgery following a quick infusion of packed red blood cells. She had a hemorrhage when they did the bone marrow and since her platelets were down to 68,000 they decided that they should give her some more before they started the sinus surgery.
The right sinuses were pretty clogged up with infection gunk and the other side was a lot better with just a little bit of gunk. They drained the right side and made both sides a bit bigger and easier to drain in the future. They also took a bunch of cultures of different spots so that they know what antibiotic will be the best to put her on. Those cultures will take a while since she's been on so many antibiotics but we should know by next Wednesday or Thursday. Right now she is still on Cleocin twice a day. She also is starting her Dexamethasone (steroid) pulse but is off all of her other chemo meds until her blood counts come back up. Her ANC (immunity) is still pretty low at 400- 600 depending on the day.
On a positive note, the spinal tap that they did while she was under was her last tap! Also, this Dex pulse is her second to last pulse! And the bone marrow that they did (the preliminary results came back fine) will take the place of the normal final bone marrow that they do in the last month!
So, overall Abby is doing much better. She's been playing today and seems to be in good spirits. She's a bit grumpy and her face and back are a bit sore but you wouldn't know it by watching her wrestle with Anna. She still doesn't like to do the nose rinse but really, who does?!
Thanks for all of your calls, prayers, and help during this busy medical time! You all rock!
Abby's on for the sinus thing tomorrow morning at 11am. We'll take her down, check her in, and they do it all. It takes about 45 minutes per side of her nose and they will also be doing her spinal tap, and a bone marrow while she is under too.
She'll start her Dex pill tomorrow too so I hope she feels like swallowing them. We should be able to bring her home tomorrow afternoon but we may have to keep her over at PSL (the hospital) if they need to watch her. We'll see.
I'm off to finish getting ready.
Well, it looks like we will be going ahead with the sinus surgery. Tiffany took Abby down to see Dr. Pachly, the ENT doc, and he took a look at her old and new films and said that we really shouldn't wait any longer. He's a nice doctor but also doesn't want to mess around and keep trying antibiotics anymore. Actually in the films from October her sinus infection wasn't completely gone on the 2nd scan and in last weeks scan the sinuses are completely filled up, mostly on the right side. There is no opening for the stuff to drain out this time, last time there was a small opening, so we can do nasal rinses until we are all blue in the face but in the end nothing is going to get past that blockage. So, surgery is really the only option left.
Now I do have to say that the film he looked at yesterday was from last Monday, Presidents Day. Things probably are a lot better after a week of antibiotics so maybe some of the wash is getting up there but who knows.
I really don't want for her to have to do yet another surgical procedure but I'm also tired of her being sick. Dr. Pachly said that she'll feel stuffed up and uncomfortable in her nose for a few days after the surgery but it will probably just feel about the same as she does now.
So that's one part of the week. The other part is the Chemo pulse. We start that today. She'll get one of her last spinal taps, some Vincristine, and IViG. And then off to the eye doctor to check her out for her 6 month follow up. She'll be on Dexamethosone for the week so Thursday ought to be a bit fun since she won't be able to eat before the surgery.
That's the scoop. I've got to get Abby ready to go to Denver again. I'm going to need to get her a more comfortable car seat with all of this driving!
Just a quick post to tell you that Abby is doing fair to good. Her fever is down a bit, 99-100, and she is eating a little better too. She still is pretty pale and takes a lot of rests but hopefully things will keep slowing getting better.
We're suppose to call tomorrow to tell them how she is doing so and then we can see what the next step will be.