Thursday and Friday, May 17th and 18th

Good evening,

It really seemed in the early morning hours of Thursday morning that Tori knew a trip back to the PCMC was coming. She had high anxiety and agitation and stayed up and going until 2:30am... Then we had to wake her up just two hours later to head to the PCMC for her 7:00am surgery. We did eventually make it and Tori's surgery went right on schedule. It lasted just over an hour and now Tori has 5" of stitches on her side once again where the baclofen pump is located and another 3" of stitches on her spine. A new tube and catheter were placed during the surgery. She is sore and getting alot of pain medications at this time.

After the surgery Tori was moved to the NTU (Nuero Trama Unit) on the second floor of the PCMC. She woke up a short time afterward and within an hour we could see she was incredibly tense with high muscle tone in her arms and upper body. Tori was on 1300 micrograms per day and upon placing the new tube and catheter they lower the rate to 100 micrograms per day. They had to do this because Tori was basically getting close to ZERO baclofen into her spine previously according to the rehab physicians... I'm still quite frustrated with this fact because when we had her baclofen levels tested last June we were informed everything appeared to be normal and working correctly. Thankfully during Tori's last baclofen pump refill Amy from the PCMC thought there is no way Tori can be that tense with 1300 micrograms of baclofen and her research into the June results showed there was a misread of some type... I'm still trying to get the details on this and I am wondering if someone just missed a decimal point or what?!?! Tori went almost a year like this?!?! Seems unbelievable... I should probably be more irate than indicated but the staff at the PCMC did save Tori's life several times previously and I have a great respect for them due to this. Right now I just want to put this behind us and keep focused on Tori and getting this baclofen pump working and providing her the benefit she deserves.

We have slowly been upping Tori's baclofen dose 100 micrograms at a time since her surgery. We increase it about every 6 hours or so then observe her and look for improvement. Tori is now at 400 micrograms. She has a very high degree of muscle tone at this time and I'm sure we are not done raising her levels. She is also moving her arms constantly in every direction possible. I haven't seen before some of the arm placements she is doing at this time. She is touching my hand where ever I place it but again, her muscle tone is very high. Her arms and hands are also black and blue with bruises because she is banging them against everything around her. I'm just wondering what she will be able to due when some of that muscle tone is under control. We are hoping and praying that she will eventually amaze us all!! :-)

Tori's anxiety and agitation levels are also very high. We have no doubts that she knows exactly where she is and is quite unhappy about it... I ended up spending Thursday night at the PCMC with her and she did not sleep one bit during the entire night... That means I didn't sleep either so in two days I've slept 3 hours and I'm going to make up for that after I finish this update. Maria relieved me this morning and just gave me an update that Tori only slept for one hour during Friday as well... I hope she is not going for her record of 64 hours without sleeping or anything like that... I gave her just about every medication possible last night and they didn't even touch her. Hopefully Maria will have much better luck tonight. Tori is totally exhausted at this point so when she finally crashes it might last for a while.

We are going to attempt to get Tori released tomorrow if at all possible. We shall see how that goes of course. After spending about 9 months in total previously at the PCMC and being at home for as long as we have it is plain hard to be there at this point. And Tori certainly can attest to this as well.

Thank you for all of your thoughts and prayers,

Tim, Maria, Tori, Whitney and Brendan