Week 1 Post-Op still a struggle

Luke's first week after the surgery has been full of ups and downs. He vomits almost daily and I worry about his significant weight loss...a whopping 4lbs in 6 days. That's like me dropping from 175lbs to 160lbs in less than a week. He has lost alot of muscle and his skeletal frame is starting to show. By Monday, he ended his medication for brain swelling and nausea; all we had for his pain now was Tylenol.

Wednesday he took a downturn and struggled with the headaches and vomiting. It became so bad we thought it was time to take him to the ER. We loaded him up in the van and he immediately fell asleep. I persuaded Rhonda that if he woke up feeling ok then we shouldn't take him in, so we waited. Once he awoke he seemed to be fine, no headaches...although he continued to vomit constantly. We did not go to the Emergency Room that day. However, Thursday things got worse. At 3:00am he awoke with a headache and vomit. By 6:00am it was time to take him to the Hospital.

Thurs 7:00am
Lukey arrived at the Altoona Hospital ER by 7:00am...still in great pain. Tylenol no longer at any impact. Within an hour, they gave him a painkiller but it had no effect either. Maybe it was called fenofeterol...although I know that wasn't the name...I have no idea, but it sounded like some russian hockey player to me. :) The analogy used was that if morphine was like Pepsi, this first painkiller was like Diet Pepsi. Next, they gave him 1mg of morphine. Again, no effect. Things even seemed to get worse as every minute he would grab his head and cry out loud. Finally, they doubled the morphine and it pretty much knocked him out. After days of headaches and pain he at last had some peace.



The ER doctor ordered a CAT scan that turned out very positive. Absolutely no swelling...at least no swelling significant enough to appear on a CAT scan. This was good news although it begged the question..."Where was all this pain coming from". The ER doctor called the Hershey neurosurgeons who operated on Luke. They assured us there was nothing major happening to Luke based on the scan but he was probably dealing with some swelling around his brain where they operated. They told us because children have large brains relative to their skull that even the smallest amount of swelling feels massive to them. This was explained as something that could happen after coming off the steroid medication that was controlling the swelling. This, coupled with the fact that the swelling was probably occuring in the area of the brain that controls nausea, would explain the increase in vomiting. The Altoona Dr recommended transport to Hershey within the hour so he could be admitted and treated in Hershey. We were fine with this decision. By 11:00, they loaded Luke into an ambulance...we decided Rhonda would take the ride with him since she would be best able to answer any questions about his condition. I tried to persuade the doctor that 2 hours was too long and a 40 min heli-flight would've been better. :) No Dice!

Thurs 1:30p
Rhonda and Luke arrived at Hershey and got a suite on the 7th floor. It was a single bed with his own shower and bathroom. They hooked him up with a fluid IV and continued hydrating him. It wasn't long before they started him back on his previous medication...steroids for swelling and some other medication for nausea.

Nancy Newlin, our neighbor and church family friend, was kind enough to drive down and stay with Rhonda through the night. She was able to give Rhonda breaks for eating, resting and showering. I stayed home with the kids and my mother who continues to spend her every breath helping us.

On Friday, he was still not well enough to go home. His appetite did increase and this was a good thing however when he was given his pills he would vomit everything up. Rhonda says this is a mental barrier and not a physical one.

Friday, 8pm
Nancy headed home and Uncle Mark came to the hospital dressed as DARTH VADER. Yep, Lord Vader did something unthinkable to the rest of the world...he visited Luke Skywalker at Hershey Medical Center and they battled in the children's room playing a few games of air hockey. Granny got a Pix message on her cell and it was Darth with lil' Luke.



We expect he will come home tomorrow. Rob Mock called and offered to go along with me on the ride to keep us company so we hope to get over and back by about 2pm. Luke still needs prayers but needs to learn to be patient and take his meds calmly so he doesn't vomit his food away. The only other issue is the fluid in the back of his head that has built up over the past week. The neurosurgeons are concerned but we have an appt Tues in Hershey again with the primary surgeon and hope to get an answer on that day.

We continue to be thankful for the overwhelming support we get from the Spring Cove Community!