Sorry I didn't update yesterday! I took some much needed time to chill. As a friend put it a week ago, we've been playing the post-op shuffle (2 steps forward, 1 step back). It's exhausting! We've been mostly moving forward though so that is great!
Yesterday was back to being a downer day for Jordan. Dr Atkins came in and had compared it to what she saw Friday night. Jordan slept a good chunk of the day with not waking up until about 11:30AM and then asleep again at 1:30PM until 6-6:30PM. 1 step back. We met with the infectious diseases doctor who knocked down her antibiotic from the big guns (Vanco) to Nafcillin. 1 step forward! It seems to be doing the trick as Jordan's blood counts continue to go down and her 2nd blood culture has come back negative. Another step forward!
Nana came to see Jordan again on Sunday too. Since she was sleeping anyway, Nana told me to get out of the room for a bit. I ran up to the Patient Library to get some new movies for Jordan and some magazines for me. The Patient Library isn't overly huge but seems to have a good selection overall.
Travis and Ashley came to visit that evening too. Travis tried but didn't get much of a smile out of here either! That is actually a rare thing! Travis gets everyone to smile. The guy is crazy!
Today Jordan has been more herself for most of the day. She sat and watched Cinderella in her Daddy's lap this morning. It was priceless to see but did I pick up the camera to catch it...nope. Wish I had! We had another ECHO this morning too which came back with nothing new. It was done to see not only if she has any pericardium effusion (blood pooling around her heart) but also to see if she had any infections in her heart from the staph bug. Another big step forward!!
Kristy and Ben made the trip down to visit Jorgie Porgie. Unfortunately they weren't able to see much of Jordan! Between doctors checking in, her ECHO, and the weather itself, they were gone again by noon. It was great to see them, just wish they would have been able to stay a bit longer :-)
We found out her docs were ready to put in her PICC line today too. Jordan was scheduled for 3PM which meant that she couldn't eat at all until after the procedure. I was a bit nervous about this since blood cultures can take up to 48 hours to grow out. She had just had a culture done the day before so we hadn't hit that 48 hour mark. After talking to several different docs, I felt a little better about it but still a bit nervous.
We talked to the social worker about which company to use for the meds and the rental of the IV pumps. Also found out from the Infectious Diseases doc (Dr. Gomez) that we are looking at doing meds by Jordan's PICC line for the next 4-6 weeks every 6 hours! Jeremy will be there to help this week and probably next but after that, it will be me at least during the day. This could be interesting!
3:00 rolled around and we took Jorgie Porgie to the exam room to have the PICC line put in. Long story short, even after 2 doses of Versed, the poor girl was just not having it! The PICU nurse who was putting in the line could not get it in after 2 pokes. She kept trying to thread it through but the line kept kinking up and not getting past a certain point. After trying it twice, she called it quits and told us it would have to be tomorrow when Jordan can be knocked out. The nurse didn't know if it was because Jordan was so upset and her veins clamped down or if they were hitting a valve. Regardless, the poor girl was so upset and exhausted from it all, Jordan fell asleep shortly after getting back to her room and continued to sleep for 2 hours!
SO tomorrow should be the day. I talked to Holly (who actually used to be our neighbor!) from Peds anesthesia about the drugs being used, answering some of Jordan's health questions, etc. We are hoping that if Jordan is knocked out, she won't be as upset and then her veins will open better to get the line in. They are squeezing us in so hopefully this will work. Once we get the line in, we could be talking about the h-word within 24 hours!
There are a few things yet to hurdle before the h-word happens. One is the inflamation levels in Jordan's blood draws. They are going down, but Dr Gomez wants it at a certian level before we leave. Also, she needs to be fever free and eating/drinking. Hopefully she'll cooperate!
I will hopefully get some pics loaded tomorrow. Right now, I'm having issues getting them on right now! AGH!