Cuddles...

Today was what we would call an completely unproductive day. Yes we got things done but in the time that it took them to get those things done cost us the one thing on the top of her list, the Zoo. We were suppose to have 1 appointment today so she'd have a break before surgery tomorrow morning but that didn't happen. After the CT scan we had our appointment with anesthesia to go over her complications. Alana has to use Malignant hyperthermia precautions due to whatever is going on with her. We've been using them for about 4 years now and it has helped her dramatically with every aspect of surgery. Anyway, this lead to her line and the dreaded crack that's been in it. After the ANP saw it she called the CVC team to take a look at it. They then asked us to call when she was having her labs done and they'd evaluated it. This appointment was scheduled for 1. 

After that she had the pulmonary exercise test done. This is done by hooking her to an EKG, blood pressure cuff, pulse ox on her forehead and then the best part, a face mask that measures the make-up of every breath she takes. Did I mention this is all done on a treadmill as it inclines every 20-30 seconds? Yeah about that...

To say she was unhappy and uncooperative would be putting it mild. She's allowed these moments of course, I just wish she'd do them at appointments when it really doesn't matter. Not in one where they need her to talk and point at a pain chart for her own good. Eventually she was willing to at least work on her pain chart and draw where her pain was and type to communicate. It's a small step and Ill take it. 

After that we were able to have some lunch (first time all week we've had lunch anywhere close to lunch time) and then we were off to the next appointment. After check in at 12.45 we sat in our pretty little room 7. We waited. We watched Chicken Little...all the way through. The Zoo was quickly disappearing and she was becoming increasingly upset and frustrated. Eventually the CVC team came in and looked at her line and decided repairing it was the best option. They they explained that they'd be setting up a mini OR in the room and showed us how it would work. There's another section of the line that has a metal connector in it. This part would be inserted into a clipped section of her old line. It would be glued using a special surgical glue and a clear tube would be placed over that as well and glued. Sounded rather straight forward. They then tell us that the line cannot be used at all for the next 5 hours. Well lets see...where are the nurses we've been waiting on to draw this huge lab list?

After they finally come in and announce the amount of labs they are taking there is a double take from both the CVC nurses. Did they just say 74 mL's? Are you sure? The average amount for a lab draw is 2 mL's. Needless to say that is how much they needed. 

After that was done they went ahead and started the line repair. Now it's repaired, is it pretty or what I would call a great? No. The splice isn't clean and there's now a metal coupler that is showing. Im told this is okay, that it should last anywhere from a few months to a year. 

Tomorrow morning at 7:30 am she will be taken back to the OR for the first round. This will be sinuses, ENT scope (looking at the voice box and surrounding area), bronchoscope with biopsies, and the bone marrow biopsy. Here's to another day and another day closer to what they think they know.