Days that Jackie has an appointment always turn out to be adventures. Today was no exception. Jackie got up a little early this morning because he was going to have speech at 8am. Becca took him into the dining room to have breakfast with the other patients. This was another trial to see how he could eat in a louder, busier environment. He did well. Based on this Jackie is getting one step closer to a regular diet and we have been given the green light to eat dinner with him in the cafeteria every night. PTL. We will start this tomorrow.
When Jackie has his follow up appointments with his neurosurgeon we like to get the CAT scan on the same day. We were picked up by the transport company in a wheelchair accessible van and taken to the neuroscience building for the CAT scan. Our driver was really nice and drove slow, avoiding as many potholes as possible. During the time we walked into the building and walked out when we were finished, we saw a handful of Jackie’s nurses from Jefferson. Many of them were purchasing the new uniforms that would now be required for them to wear at work. It was odd but wonderful to see them outside of the hospital setting. The CAT scan was quick and painless. We walked across the street to the building where Jackie’s post surgery follow up appointment was scheduled. We were almost 2 hours early. The office staff said they would try to get us back as soon as they could, but we only went back 15 minutes ahead of schedule. Between weight shift reclines in his chair and standing breaks, we managed to work Jackie through this tiring period of time. Right before we went back we ran into a Mother and son who looked familiar. The young teenage boy had been in the NICU during part of the time Jackie was there in April. I approached her and she remembered me. As moms, we shed some tears together in the NICU waiting room. Dr. E had removed a large tumor from her sons sinus cavity near the brain and he had made a full recovery. I could tell she had wished the same for Jackie, but it will just take a little longer for him to get there.
It is always great to see Dr. E, our neurosurgeon with the personality of a GP. We have become familiar with most all of his residents and today we saw one of his senior female residents who we have come to know and really like. She saw Jackie first and gave us the awesome news that his CAT scan looked good! PTL!!! At this point, Jackie seems to be be shunt independent, meaning we can keep it turned off! She proceeded to take out all the stitches and staples in his head. Jackie is such a trooper, he has been through this drill so many times he doesn’t even flinch. Dr. E then came in and we were able to get all of our questions answered. We plan to follow up with him one more time before we head back home.
We then proceeded to wait another 2 hours until the transport vehicle picked us up and took us back to Magee. There is always a valid excuse why they are late, as to whether I believe it is another story. By the time we got back to Jackie’s room you can only imagine how tired he was. We managed to have him eat a small snack before getting a shower and heading to bed.
It had been a very long day. We feel incredibly blessed by the CAT scan results and will continue with our mantra of prayer, positive thoughts and patience.
Great difficulties may be surmounted by patience and perseverance.