Report: Day 1 Post-Surgery

Hi to all. Thanks for all your well wishes and for keeping Avery in your prayers all the time. She has had a pretty good day...all things considerd. She did have a seizure today at about 6 PM. It is not unexpected...the doctors say that seizures in the first few days are not too concerning because the surgery itself can lead to some activity. Still, it was unnerving to see! It lasted about 40 secs and only involved the eyes and her right hand (so less then we are used to seeing). We also think she may have had a very brief one (about 5-6 secs) a couple hours before that. So, I ask everyone to still pray hard for her. Pray that the seizure(s) are nothing more than a result of the traumatic surgery itself. Ask God to send them away to never return. We are praying hard here. Otherwise, she was more swollen today, as was also expected. By the time we had to clear out for shift change this evening though I think she was looking better (or, at the least, I had adjusted to seeing her like that such that it didn't look as scary to me anymore). Her left eye is pretty swollen up and bruising (again as expected). She is in a little pain on occasion, but we just push the button on her pain med pump and she rests again. She DID get the breathing tube removed this afternoon and so is breathing without assistance (YEAH!!) One less thing hooked up to her! She still has the drain in her head (and some stuff has been draining slowly since about 2 AM this morning...again, this is normal), an arterial line, a central line, a regular IV, a catheter, an O2 SAT monitor...so she has a lot of "lines" running from her here and there. She will have a CAT scan in the morning to evaluate the disconnections...to make sure that nothing points to any remaining connections between the two side. Please pray that all looks great on that scan. I can't think about her going through another surgery again...not yet anyway. We saw Diana today, the clinic coordinator who was my inital contact here at Hopkins and a super nice and helpful lady. She told us that Dr. Jallo said that Avery's brain on that side was very abnormal and was up there with some of the worst he has seen. That cetainly validates it being removed/disconnected, as it was serving her at all. The nurses clean her up a bit more today and she looks better with the breathing tube out of her face. We can actually get close enough to kiss her pretty face now! And close enough to rub her head since they turned it today (so that the incision sites are against the bed). She has the hair side up! See, they only shave were they needed to make the incisions and work. So she has hair on the other half of her head still. We will have to work on that when she gets feeling better. That should be in a couple of days if all goes well. Today, I got to meet another parent that posts on one of the boards I am often posting on. She is here at Hopkins with her daughter for some diagnostic testing and a video EEG. Her daughter, who will be 6 years old in December, had recently been diagnosed with Rasmussens. This is another brain condition that causes intractable seizures and for which hemispherectomies are performed for. They received a bit of news that was concerning...that the non-Rasmussens side may be showing some non-normal function (I think, if I understood correctly). But, they are doing more testing to try to further understand the picture. Please pray for this family too when you pray for Avery. It is a tough place to be for a parent, especially when the news is not coming back the way you had hoped or when the experts are not yet certain hoe to proceed. Thanks again for all your thoughts and prayers. The heavens have certainly been flooded in her name. It has certainly been working, so keep them coming. Love to you all.