On Monday Josh had a successful surgery to remove the tumor in the Thalamus in his brain. Thankfully the doctor was able to remove all of it.
Recovery from that surgery has been slow he had a hard time waking up fully after the procedure, but has been responsive to questions of a yes/no variety with a thumbs up/down answer. He has also been able to respond to directions without just mimicking. The hardest part is that he has not been able to speak since before surgery. Something we were not expecting.
He was improving yesterday very slowly. He was beginning to move his right leg and arm a bit and PT even had him sitting up with a lot of support. Around 4 – 4:30 pm yesterday he got very agitated and became clammy and his heart rate dropped. They rushed him down for a quick MRI and found that fluid was building back up in his ventricles and there was some type of fluid in the area where the tumor had been. The fear was it was a blood clot.
Josh headed into surgery around 5-5:30 pm and was in there for several hours. It took extra time because he got sick just before surgery began due to the pressure in his head. So they had to clean him all up.
Surgery revealed his ventricle drain had shifted and was not working properly, so they fixed that. The fluid in the tumor resection area was actual cerebral spinal fluid that got in, but couldn’t get back out so it was building up pressure. They cleaned it out and then left a drain behind to help make sure it was gone. He then went through a CT to make sure everything was placed properly and a lung x-ray to make sure they were clear of fluid from when he got sick. He also got moved back to the PICU
Last night and today have been for the most part (thankfully) uneventful. He’s recovering and waking up from the anesthesia slowly. And is a little of the way back to where he was yesterday before everything went downhill. OT came in and worked with him on his arms a bit today and he did get a feeding tube as he has not really been able to eat in days. He is also scheduled for a full MRI at 4 pm today and is expected to be transferred out of the PICU sometime today.
Pathology is still not back on the tumor, but doctor did say that he can see that the current tests they are running would be for finding out the level of an astrocytoma, which is what he thought it was in the first place, but we’ll wait for the final report to be sure.
We’ve now been in the hospital a full week, been in 3 different rooms on the PICU floor, one room on the 9th and one on the 7th. We’ve dealt with a lot, but somehow we will get through it all. Thank you all so much for your continued thoughts, prayers and blessings on us it means more than you can ever know.