Thursday, September 14, 2023

Thursday, September 14, 2023

Tonight's picture was taken in September of 2008. Mattie was in his second month of treatment. That day, his "girlfriend" Charlotte came to the hospital to visit. Keep in mind that both of these children were only 6 years old. Entering a pediatric intensive care unit is scary! Yet Charlotte did it often and endured many of Mattie's highs and lows. That day these friends sat in Mattie's bed and watched Scooby Doo together. Meanwhile, Tricia, Mattie's favorite HEM/ONC nurse was accessing Mattie's IV and was doing it in a way as to not interfere with their time together. Tricia's birthday is on Saturday, and in honor of an incredible nurse, I posted tonight's photo. 

Quote of the day: I miss the warmth of your gentle hug and the love I felt when my arms were wrapped around you. I miss seeing your beautiful smile and the sound of your voice saying my name. I miss hearing you say, ‘I love you’ and me saying, ‘I love you’ in return. ~ Millie P. Lorenz

I am at it with my dad again! He is itching all over again. He has no insect bites, but I now know what this means. The itchiness is internal, which in my mind means it is medication based. The doctor thought it was the antibiotics that he was on. My dad was taking antibiotics for two weeks because he had open wounds from scratching so much. So to counteract that reaction my dad took prednisone for five days. Now everything is out of his system except the diabetes medication, which is a relatively new addition. I felt right from the beginning that my dad was having a reaction to the diabetes medication and not the antibiotic, but frankly since both were added around the same time, I decided to follow the doctor's recommendation. However, I text messaged the doctor and asked him if we could try stopping the diabetes medication for a few days to see if there is a difference. In any case, today was the first day without being on the med, and guess what? I haven't seen my dad scratching! I am hoping this is a trend, because this is a vicious cycle. 

I would say overall that my dad is declining. His physical therapist sees what I am observing too. In fact, today she recommended that he go back to in-home PT, which is reimbursed through Medicare. She feels he would requalify for these services and that his rehab doctor would most likely agree. The reason she is recommending this, is my dad would get an addition day of physical therapy a week. Two private sessions a week, plus one reimbursed through Medicare. I am thinking about it, because I am well aware of my dad's level of exhaustion and am not sure that three sessions a week will be what he needs. 

Two highlights of my day today. This evening, after meeting all of my parents needs, I went for a six mile walk. When I start walking, part of me wants to turn right around and go back home. As I am chronically tired. But I push through that feelings and eventually feel better about having fresh air and seeing signs of nature. 

The other highlight of my day was receiving a beautiful and heartfelt card from my friend, Denise. Denise wanted to remind me that I am not alone, that my friends are still out there and care. Which was good to hear because given all I am dealing with, it is easy to feel alone and unsupported. As soon as I saw the sunflowers on this card, I knew immediately that words of support and compassion were going to be inside. Sunflowers are the ultimate symbol of Team Mattie, and ironically many members of this team, are still supporting me through this next phase of my life.