Monday, April 23, 2012
I am writing from an all too familiar place tonight, figuratively and literally. Eli once again has found himself under the rule of Murphy’s Law and is facing his fourth brain surgery at La Bonheur Children’s Hospital. We had an early busy day that started off on a bad foot with Eli having to have blood drawn from his arm and not his line. So, having to hold him down screaming out of the gate this morning was not a good sign. Followed by a bumbling effort to collect a sterile urine sample in which they hand me two containers, a pan, and a squirt bottle of a black antiseptic cleanser that stains everything it comes in contact with then point me to the nearest public restroom. The bustling morning continued with consultations to prepare for chemotherapy which is scheduled to begin May 2, although that is tentative after today’s finding. Then he had a chest x-ray to check that his hickman line was in place, followed by sedated CT scans and MRIs of the brain and spine to check if the tumors had responded, and a lumbar puncture to get a sample of cerebrospinal fluid. The imaging revealed that there was bleeding in his brain cavity, so the lumbar puncture was canceled and the wheels were set in motion to immediately move us over to La Bonheur to prepare for surgery in the morning. So, I am once again sitting in an alcove in a room on the 7th floor looking through my reflection in a window that faces east toward home. The bleeding is expected to be due to “over shunting.” He will have surgery to replace the static valve with a programmable valve which will control the amount of fluid that is allowed to flow out of his cranial area to the torso. Currently, the valve pulls fluid from that area whether it is overflow or not. The “power” is too strong and has created a vacuum which has ruptured tiny capillaries around the outside of the brain. This is not an acute injury, there is no brain damage, and it is something that does happen, nevertheless it is a complication and requires surgery. Our doctor at St. Jude was visibly frustrated because of the complications by which we seem to be plagued, but he was relieved that the problem manifested itself before chemo began. I believe the chemo affects his body’s ability to clot (maybe), so to have something bleeding while undergoing chemotherapy would be a detrimental situation. So, we are blessed to know about the problem now, and it is detectable with CT scans, so he can be easily checked to determine that the bleeding has stopped before beginning chemo. Furthermore, he said he would be comfortable to move the start of chemo a few days to ensure that Eli has healed. I am not sure of the exact time of surgery, but it is in the morning and we may stay another night. As far as the tumors, Dr. Robinson said that they have responded to the radiation, but were not gone and he did not expect them to be gone. But, he said Eli looked “very good” going into chemo. Eli is doing well. He has eaten pretty good tonight, and has been in a good mood. He is eager to get to Toys R Us. I made a silly statement back in January that he can get a toy when he has surgery. I never thought that we would be making our sixth trip to TRU in four months. The picture tonight is of Eli wearing his “cheerios”. These are special stickers that are used as markers in a STEALTH CT scan which takes 3-d images to help guide the surgeon during the procedure.