Apr 2005 | May 2005 | Jun 2005
Next IV treatment...went well. He is more fearful. No real improvement seen yet though with physical abilities. Lots of pain still. Rested at babysitter's home and with grandparents all week...no school! Will go to his dad's this weekend per Charlie's request.
February 21, 2005
Third port IV treatment...went well. No improvement seen in pain or abilities. Does not want to do stretching, but agrees with some when we try each day. Still coughing.
February 22, 2005
Back to school. He was tearful all day. Teacher called and he "missed me." Out of sorts and depressed. Academically doing ok, but his physical problems are same. Difficulty coping with physical issues.
February 23, 2005
Back to Chicago and Chidren's Memorial Hospital. PT and OT evaluations done. Slight range of motion improvement. Dr. Pachman is worried about his cough and the muscle weakness in his trunk and neck. He still has swallowing issues also. Dr. Pachman suggested admission to Children's Memorial to begin a one week IV treatment regime of Solu-Medrol and wants to add methotrexate and Zantac (IV). Asked if this could be done with home health and she agreed and ordered treatment through Option Care as long as he stays at home and gets plenty of rest. Dr. Pachman also wants him to stay home from school for one more month and get a tutor. This will help alleviate stress and psychological trauma. Being at home to get treatments and being out of school will be good for him psychologically. Chest x-ray and blood taken at Children's Memorial. Nurse had some trouble all the vials of blood...had to restick the port to get four final vials.
February 24, 2005
Home health here. Began treatment...1st zantac, 2nd methotrexate, 3rd Solu-Medrol. Went well. Nurse left needle in Medi-Port since IVs will be daily over next week. Charlie had a migraine...slept most of day on the couch.
February 25, 2005
Charlie much better...more perky today. He went to sitter's house...laid on her couch all morning so I could work. Went ok. Home health here for Zantac and Solu-Medrol treatments. Tolerated well. Phone call today from Option Care stating that Blue Cross/Blue Shield denied payment for his treatments. Called BC/BS case manager, who was rude and short with mestating that Dr. Pachman did not give reason enough to justify treatments at home. BC/BS saying he should have been an inpatient as treatment is unsafe in the home. The case will now go through an "appeal" process. Dr. Pachman will have to talk to them herself...provide documentationenough to show necessary medeical need and prove that treatment is successful thus far. I had an emmotionally bad day going through this. Also called Children's Memorial and talked to Susan (Dr. Pachman's nurse) regarding the issue. She is waiting for the appeal letter and will give she can to get insurance to help us. She states many kids in clinic get these types of treatments at home. On BC/BS website with Children's Memorial Hospital they say they cover services through them...why us? Must call next week. Dr. Pachman not in the office until next Wednesday. We go back that day for follow up anyway. I'm praying BC/BS will come through for us, otherwise Option Care agreed to only charge $100/day for the days they are out here. X-ray results cme back negative for pneumonia.
February 26, 2005
Charlie seems even better today. Up himself...did stairs himself...first time in two weeks again. Option Care here to give Zantac and Solu-Medrol. He is tolerating treatment very well and cough is better today too. Charlie had a friend over today. This elevated his mood also. Tutor starts Monday. She'll come 5 - 6 pm each night.
February 27, 2005
Charlie is asking for help today. Seems wiped out and resting all day on couch. Refused to even try stairs or walk any distance. Mood was sad. Maybe having a friend over all day yesterday wore him out. Got IV treatment today of Zantac and Solu-Merol.
February 28, 2005
Still more weak. Helping him with stairs. Mood is a little better. Received IVs of Zantac and Solu-Medrol. Cough stil there and disrupting sleep. He loved the tutor.