Katie Update #20

It is hard to believe that this is the twentieth update on Katie's condition. It is even harder to believe that this today is the thirty-first anniversary of her first seizures and her admittance to the hospital. For all of us, time has seemingly stood still throughout this entire ordeal. It is now almost March, and I feel like winter just began. Well, again I must apologize for my tardiness on getting this out. I wanted to wait until we had the results of the MRI so that I wouldn't simply be reporting more of the status quo.

Katie did, in fact, have the MRI late last night. Now that she is off of most of her IV medications and is much more stable, this process isn't nearly as stressful as it was in the past. Of course, I wasn't there this time for fear of those defibulator paddles in Melrose's hands, but by all reports, things went well and without incident. We received the results a couple of hours ago. The good news is that there is no bad news. There is still no sign of further growth in the lesions. The neurologists were somewhat concerned about this, as Katie was having some pretty severe seizures Sunday night and early Monday morning, which may have indicated that her medications weren't working and that something else was going on in her brain. Had the doctors seen any further progression in the lesions, they would have had to do a biopsy on the affected portion of her brain to try and determine what else might be happening. Fortunately, this will not have to be done.

She has been disconnected from the EEG for a little over 24 hours now, which is a bit troubling to us, but for the 24 hours prior to disconnection, she had no seizure activity. They increased her dosage of Phenobarbital on Monday morning in response to the seizures, and we assume that this new dose was (and hopefully still is) working to control the seizures. The doctors now want to see a few things before we start celebrating any major achievements here. First, obviously we need to see a few more days of seizure free consciousness. We have had quite a few false positives in the past, and we certainly don't want to assume anything here. Second, she has to be able to breathe on her own. She is initiating her breathing now, but the ventilator is still providing quite a bit of support. Third, she has to be able to swallow on her own. Currently she is unable to do this very well, which requires that we suction out the saliva quite regularly. Once these three conditions are met--and perhaps others that we aren't aware of--she can be taken off of the ventilator and moved out of PICU. We are wary of looking forward for fear of further bad news, but that is the plan assuming all goes well over the next few days.

She is quite conscious now at times. Today, especially, she has been very reactive. The occupational therapist came in today and was encouraged by how much movement Katie was able to initiate and control on her own. She is moving her hands and arms quite regularly now, and does so on request, which is a very positive sign. Her eyes are open and somewhat reactive to movement now, which is new and also positive. There seems to be less crying now, which is hard to interpret, but certainly better on the emotions of the family. They continue to lower her Methadone and Ativan levels, which are pretty much the only remaining medications that are not intended to control her seizures. She continues to have a strange fever that fluctuates between 99 and 103 or so. They are now looking to her sinuses to see if perhaps there are problems there that might be the source of the temperature issues. The MRI shows signs of a sinus infection and she has some other signs of infection in her ears. The doctors plan on sending her for a CT scan tonight or tomorrow which will provide data for the ENT attending in determining what, if anything, might need to be done with her sinuses. All in all, since Monday afternoon things seem to be going pretty well. As always, we remain cautiously optimistic and constantly in prayer.

More to come as more comes.

Paul