The ride continues

You remember a few weeks (or maybe days ago) -- I seem to have lost the ability to know what time/day/date etc it is -- there was a roller coaster somewhere that got stuck. They were able to get the ride down, lowering the car into the station, but after the call arrived in the station, the hydraulic lines exploded and poured hydraulic fluid over all the riders.

That's kind of what today feels like for me.

We woke up after sleeping in and headed over to IPOP. Trish had a good night and was feeling good this morning. She looked good too. We were excited to begin the process of recovery to get home. Her platelet account was low and she was scheduled to get platelets today. I ran errands and worked while she was in IPOP.

Two roller coaster corkscrews came our way during this time. Trish (and most patients) get pre-meds before platelets -- it is usually Benadryl. Usually the side effect is sleep. Occasionally the side effect is anxiety -- you feel like you are wound up and jumping out of your skin. Usually Trish only gets this when they give her more than a dose of 37.5 (I forget the units). For some reason, when her nurse was about to give her 37.5 of Benadryl, Trish stopped her and said just give me .25 and go up if needed. Boy was it a good thing she said this....If she had gotten 37.5, she would have been a whole lot sicker. She got .25 and got the anxiety side effects. To counteract this, they give vitamin A -- Ativan (not really a vitamin folks). This of course makes her sleepy and now she is groggy instead of awake and happy as she started the day, her speech is slurred and she is resting.

This was the more mild of the two curves we rode today. The bigger and scary curve came when the nurse printed Trish's lab reports for us. Her liver function tests, if the lab test is accurate, have worsened. The billirubin is up about 10 points to 51.5. The ALK and AST also rose significantly (click on the counts link n he left column to see these and read the post from earlier this week for an explanation). This is scary stuff. We are all hoping that this is more lab error than anything else. The nurse did mention that the lab said the blood samples were clotting and difficult to test. Let's all hope and pray that's the primary issue and these counts are really lower. It seems everytime we get excited about a significant move forward, we get kicked down a few notches.

In other news, Dr. Bolanos-Meade made a special trip to talk to us today and let us know that he, Dr. Jones and Dr. Griffiths had tea this morning and all agreed that Trish should continue ECP at least once a week, once she is home. So I have already started the wheels turning to make thise appointments. This also means that we will leave Trish's catheter in place, until her body recovers to the point where she might prefer being suck with a needle weekly instead of having the catheter.

Folks, we are still far from the safe zone and today's labs serve as a reminder of that and spook us into less happier moods than we have known in the days since her gall bladder removal. Please continue to pray, send good cheer and root Trish on to success.

We will likely move back to Aunt Mary's this weekend. We have been residents of the Hackerman-Patz house since August 7th when Trish was discharged from the actual transplant and we are looking forward to actually being in a home again.