Hi everyone. I know I haven't posted in months but life sure gets busy and stressful. I am doing okay. I am pretty devastated by all this. Josiah has come leaps and bounds since Augaust 17th. That day I thought I was going to loose Josiah. That day I will never forget. I called all of our families to come down. The night before i had read to him before bed time and he seemed fine. The next morning he looked tired and he threw up. I recall the doctors telling me that if he throws up and continues to play he is okay, but if he acts lethargic bring him to the hospital. So based on that information we took Josiah to the hospital. When we arrived the nurses were expecting us and so we were admitted pretty fast. The first thing they did was take his vitals, get a catscan,and access his port. Well things would have gone okay if his port hadn't been clogged. The nurse had to access him three times and then with no success they ended up puting in an IV in his arm. We had to hold Josiah down because to access (which means to insert a needle in the port that is right under his skin on his chest) him he had to be still. Well Josiah screamed and wrestled. We had to hold him down as he tried so hard to escape all the chaos. Josiah needed steroids (Decadron) asap and also blood sample. Once they got the IV in and started his steroids he calmed down. I ended up reading to him as I held him. After the steroids took effect Josiah was so much better.
After things calmed down the doctor said that the throwing up was tumor related. He advised a shunt(which is a pump that takes the excess fluid from his brain to his stomach)to be put in so that it can alleviate pressure from all of the fluid back up in his little brain. It was hard decision, but well worth it. Up until the surgery we had quite a difficult journey. Since Josiah was on a high dose of steroids his moods were very intense. He was irrational, you couldn't reason with him, but God sure did help us. We were able to help Josiah process the major events ahead of us. The first one was the MRI (which he did awesome), then waitng for hours for results, and finally for the neurosurgeon to look at the MRI scans to plan the surgery. On the day of surgery Josiah had to go 8 hours with out eating or drinking. It was so hard. Josiah kept incessantly asking for his sleepy medicine (which is his anestetia)literally every minute. The neurosurgeon finally arrived and had looked over Josiah's results. She said that the tumor has grown 40-60%. She then proceeded to tell Dan and I how things would go if Josiah were to pass. She showed the MRI scans and yes his brain stem was swollen and the tumor was bigger. I stood there numb and rejecting that information. AS soon as we finished talking we prepared Josiah for his shunt surgery. He kept saying he wanted his sleepy medicine and he was scared when the nurses were prepping him for surgery. I had to carry Josiah to the operating room and lay him on the operating table. That was an outer body experience for me. I felt like I was in a dream and that none of this was really happening.
During the surgery, I went downstairs to the cafeteria to see my incredible family. I enjoyed just being there with them. I kept thinking how blessed we are to have family that comes down anytime we need them. When it came time for Josiah's surgery to end I got to see him almost right after leaving the operating room. As I approached the recovery room I heard Josiah screaming and crying. I ran to him and the first thing out of his mouth was "I want my sleepy medicine!!!" I tried to explain to him that he already had it done and that it was over but he was still under the effects of the anesthia. He was drowsy and unsettled. He was confused and pulled out one of his IV's from his foot. I tried to comfort him but nothing seemed to work. I was so angry and just devastated seeing him like that. I wanted to go outside and scream. I had such intense emotions that I just started to cry.
Well I will type later I am tired.
