Surgery, MRI, & Good News

 

 

 

We left for the hospital this morning just before 5am amidst snowy and very cold wind chill temperatures. Elias' pre-op report time was 6am After a long day at the hospital yesterday for IVIG we were still a little groggy and not really feeling the long day ahead. Fortunately for us the snow was light and the roads were fine. A good beginning to a good day. 

 

 

Today's O.R. time was the least complicated we believe Elias has ever had. Today he would be out under general anesthesia for dental screening cleaning and oral cancer screening, quite common among Fanconi Anemia patients. While under he would also have another MRI to screen for more seizure evidence. All in all minimally invasive, but with Elias anytime he goes under anesthesia it is a risk, for several reasons and keeps his doctors and us on edge. Elias did great and woke up quickly in recovery. Which was a good thing since we had another appointment following the surgery. Yes we pack it in don't we! The dentist was please with what he saw. Elias teeth are healthy and strong despite not being able to take any food or drink by mouth. There was no cavities or decaying either. Because of his NPO status he had quite a build up on his teeth, but that was all cleaned away and Elias' pearly whites are gleaming. We were happy to hear the things the dentist did not see, no cancerous looking spots. Head and Neck cancers which include the mouth are highly prevalent. They complimented us on how well his teeth have been cared for. In fact they noted that Elias presents older based in his teeth structure. Elias ahead of the curve on something? That was a rare gem to hear.

 

The was Neurologist happy with Elias' development and activity. We spent a good portion of the appointment discussing the things he is doing. MRI showed no evidence of seizures (again). The white spot they have been monitoring looks the same. They suspect that it may just be scarring but they are continuing to watch that it may not be a tumor. Not growing in size and possibly even appearing smaller has them leaning more towards the scarring. She did tell us about a gland that was in the wrong position, and while it has nothing to do with seizures, she would like to watch as he gets bigger, how it functions. So there always has to be something new added to the mix. We also discussed his increased care needs with the potential risk of seizure increasing while asleep. We discussed the situation about the lack of overnight nursing coverage. She agreed to write letters of support for any advocacy we embark. Just to catch everyone up on the nursing, we are down to 1 night per week and every other weekend, however the nurse has shown up just half the time so she isn't reliable. We got the info we needed from Neurology and the strong advocating will commence.

All in all very good news today. Elias is home and recovering well from the grogginess of anesthesia. Our wonderful daytime nurse, who we and Elias love to death offered to work tonight for us since she was "off" today with Elias in surgery so that we can get some much needed sleep. We told her she didn't have to do that, but she insisted. We are thankful for that and will gladly take her up on the rare opportunity to sleep. Especially after the last two long days at the hospital. Thank you all for your support, thoughts and prayers. They help make a rocky road less bumpy. We are thankful for the positive news and progress today brought as we continue to watch Elias thrive and exceed doctors expectations.