I Stand Corrected
Well, I really didn't have a lot of hope about the appointment for Shelbie earlier today. In fact, truth be told, not only was I negative and hopeless about the whole thing, I was nervous too. Deep down, I didn't want to get back to life so soon after the couple of weeks I have spent with my head buried in the sand!
In case you were wondering, my head is no longer in the sand...blech! I think I learned a few things about us while sitting in the doctor's office waiting, waiting and waiting. Our nervous anxiety comes out in the most ridiculous joking and uncontrollable laughter. All the waiting really got us out of control. I was wishing we had a video camera with us to make a You Tube video...it was so funny but, you had to be there.
When he finally walked in the room, I was red with laughter and blurted out, "Glad you could make it!" then Shelbie said, "Thanks for joining us." and we all laughed again. Seriously, he was nearly 45 min. late just getting in the exam room. We waited 20 minutes in the waiting room but the whole time, he was wandering around the reception area chatting and laughing with the receptionists and we were the only ones in the waiting room so being late didn't make sense.
He scoped Shelbie and saw that she has tons of swelling and inflammation and initially thought it was a viral infection. As we spoke more about her history, he felt strongly we needed to look further for a fungal infection because none of the antibiotics, steriods, anti histamines, decongestants have done anything to make even a slight difference in two months. He said a fungal infection would be stubborn to any of those treatments. So, tomorrow, we will do the CT scan to rule out a fungal infection or more serious bacterial infection in her sinus cavity, behind her eyes or even in her bone. Let's pray it's not a fungal infection. The only treatment is surgery and trust me, we don't need surgery!
This doctor earned his place on my coveted pedestal. It's getting harder and harder to make it to my pedestal of fame. What did he do to earn that place you ask? Well, he was the first doctor ever to acknowledge how hard this is on Shelbie, on me, on our family. He didn't try to treat her like a 'regular' patient. He considered deeply all the factors...no B Cells for instance and the role her crummy immune system might be playing. He explained that her body may not show an immune response like most to an infection so she overdoes it. Most of us, with a sinus infection would be laid up, fever, feel pretty crummy. Since Shelbie has only had a low fever of 99, we, some doctors, assume it's nothing serious when it could actually be life threatening but her body doesn't recognize the seriousness of it. That was a paradigm shift for me. It's hard, even for me to change gears and know how to take care of someone without an immune system. It's actually very terrifying.
He went on to review what she has gone through in the past 4 months. Chemo, bone marrow biopsy, iron infusions, plasma infusions...He said that the amount of energy her body is expending just to try to heal from those things...how it is taking all the energy to try to rebuild her bone marrow after chemo destroying it all, is staggering. Then throw even a simple virus into the mix and it will overwhelm her system. Wow!! That is staggering and sobering! Most doctors assume she is just depressed and that is the reason she is so tired...I will never look at her in the same way again. How do you even be a parent in a situation like this? My reference points for taking care of illness have been lost...I can't wait for a high fever to alert me to a problem...I can't let things like eye infections go for two months without being a louder squeak in the wheel.
This is crazy...what is becoming of this beastly disease....it's hard.
In case you were wondering, my head is no longer in the sand...blech! I think I learned a few things about us while sitting in the doctor's office waiting, waiting and waiting. Our nervous anxiety comes out in the most ridiculous joking and uncontrollable laughter. All the waiting really got us out of control. I was wishing we had a video camera with us to make a You Tube video...it was so funny but, you had to be there.
When he finally walked in the room, I was red with laughter and blurted out, "Glad you could make it!" then Shelbie said, "Thanks for joining us." and we all laughed again. Seriously, he was nearly 45 min. late just getting in the exam room. We waited 20 minutes in the waiting room but the whole time, he was wandering around the reception area chatting and laughing with the receptionists and we were the only ones in the waiting room so being late didn't make sense.
He scoped Shelbie and saw that she has tons of swelling and inflammation and initially thought it was a viral infection. As we spoke more about her history, he felt strongly we needed to look further for a fungal infection because none of the antibiotics, steriods, anti histamines, decongestants have done anything to make even a slight difference in two months. He said a fungal infection would be stubborn to any of those treatments. So, tomorrow, we will do the CT scan to rule out a fungal infection or more serious bacterial infection in her sinus cavity, behind her eyes or even in her bone. Let's pray it's not a fungal infection. The only treatment is surgery and trust me, we don't need surgery!
This doctor earned his place on my coveted pedestal. It's getting harder and harder to make it to my pedestal of fame. What did he do to earn that place you ask? Well, he was the first doctor ever to acknowledge how hard this is on Shelbie, on me, on our family. He didn't try to treat her like a 'regular' patient. He considered deeply all the factors...no B Cells for instance and the role her crummy immune system might be playing. He explained that her body may not show an immune response like most to an infection so she overdoes it. Most of us, with a sinus infection would be laid up, fever, feel pretty crummy. Since Shelbie has only had a low fever of 99, we, some doctors, assume it's nothing serious when it could actually be life threatening but her body doesn't recognize the seriousness of it. That was a paradigm shift for me. It's hard, even for me to change gears and know how to take care of someone without an immune system. It's actually very terrifying.
He went on to review what she has gone through in the past 4 months. Chemo, bone marrow biopsy, iron infusions, plasma infusions...He said that the amount of energy her body is expending just to try to heal from those things...how it is taking all the energy to try to rebuild her bone marrow after chemo destroying it all, is staggering. Then throw even a simple virus into the mix and it will overwhelm her system. Wow!! That is staggering and sobering! Most doctors assume she is just depressed and that is the reason she is so tired...I will never look at her in the same way again. How do you even be a parent in a situation like this? My reference points for taking care of illness have been lost...I can't wait for a high fever to alert me to a problem...I can't let things like eye infections go for two months without being a louder squeak in the wheel.
This is crazy...what is becoming of this beastly disease....it's hard.
Comments
Post a Comment