Monday, May 31, 2010
Monday, May 24, 2010
Sunday, May 2, 2010
Update... UF Visit This Week
So, it's been a lot lately. We have had a lot going on with the kids schedules and Joshua's trips to UF.
We had our appt with Joshua's doctor regarding the results of the heart cath in addition to his regular monthly appt (6 min walk, labs, EKG, and ECHO.)
It was an emotional visit for me. We discussed what things look like as far as the slight progression of the disease. He discussed there are 4 classes of PAH, 1 being the least advanced and 4 being the most advanced. Joshua is at a high 3 almost to 4. He told us there could be an argument for going to the next step with Joshua since his numbers from the cath were not great but he is optimistic that we don't need to do that just yet. The next step would be the continuous IV meds through a central line. After that happens, Joshua would most likely be placed on the transplant list. Of course he answered my many questions and I am just trying to stay hopeful that won't happen for a long time and if/when it does, that an organ would be available. This makes me sad just thinking about it since that means someone else would lose their loved one.
Most of this conversation happened while Joshua was getting his ECHO so just John and I were in the room with the doctor. It was a lot to hear. I hate having these conversations about transplant like this is just a normal conversation. I never thought I'd be sitting in a doctor's office talking about this, but then again, who does? I've almost felt like Sally Field in the movie Steel Magnolia's during the cemetery scene where she loses it with her friends. From laughing to crying to yelling. That's how I've been feeling. It's hard. I know God is going to use this for good but it still is hard.
Micayla had made a card for Dr. A that read:
"Dear Dr. A., This is Joshua's little sister. Thank you for taking care of my big brother. I love him so, so, so much and I don't want to lose him. Love, Micayla".
She had drawn very detailed pictures of all of Joshua's equipment. His CPAP machine, Tyvaso machine, an EKG monitor, blood pressure cuff, syringe, and pill box. It was very cute but makes me cry thinking about it.
We gave it to him and he spoke with her about becoming a doctor and finding a cure for Joshua. He was impressed she knew what all the different things were for. John and I both had tears in our eyes.
Once we were finished talking to Dr. A. he told us he would not be seeing us again. He has to go overseas to take care of his parents. Of course, I started crying.
Lots of tears this visit. I know we will be in great hands with Dr. F. but it's a comfort thing. We've seen him every month, sometimes several times a month, for over a year.
Anyway... that's all for now. I'll leave you with this picture we took after hearing he would be leaving. Thank you Dr. A. for taking such good care of our boy! We love you!
We had our appt with Joshua's doctor regarding the results of the heart cath in addition to his regular monthly appt (6 min walk, labs, EKG, and ECHO.)
It was an emotional visit for me. We discussed what things look like as far as the slight progression of the disease. He discussed there are 4 classes of PAH, 1 being the least advanced and 4 being the most advanced. Joshua is at a high 3 almost to 4. He told us there could be an argument for going to the next step with Joshua since his numbers from the cath were not great but he is optimistic that we don't need to do that just yet. The next step would be the continuous IV meds through a central line. After that happens, Joshua would most likely be placed on the transplant list. Of course he answered my many questions and I am just trying to stay hopeful that won't happen for a long time and if/when it does, that an organ would be available. This makes me sad just thinking about it since that means someone else would lose their loved one.
Most of this conversation happened while Joshua was getting his ECHO so just John and I were in the room with the doctor. It was a lot to hear. I hate having these conversations about transplant like this is just a normal conversation. I never thought I'd be sitting in a doctor's office talking about this, but then again, who does? I've almost felt like Sally Field in the movie Steel Magnolia's during the cemetery scene where she loses it with her friends. From laughing to crying to yelling. That's how I've been feeling. It's hard. I know God is going to use this for good but it still is hard.
Micayla had made a card for Dr. A that read:
"Dear Dr. A., This is Joshua's little sister. Thank you for taking care of my big brother. I love him so, so, so much and I don't want to lose him. Love, Micayla".
She had drawn very detailed pictures of all of Joshua's equipment. His CPAP machine, Tyvaso machine, an EKG monitor, blood pressure cuff, syringe, and pill box. It was very cute but makes me cry thinking about it.
We gave it to him and he spoke with her about becoming a doctor and finding a cure for Joshua. He was impressed she knew what all the different things were for. John and I both had tears in our eyes.
Once we were finished talking to Dr. A. he told us he would not be seeing us again. He has to go overseas to take care of his parents. Of course, I started crying.
Lots of tears this visit. I know we will be in great hands with Dr. F. but it's a comfort thing. We've seen him every month, sometimes several times a month, for over a year.
Anyway... that's all for now. I'll leave you with this picture we took after hearing he would be leaving. Thank you Dr. A. for taking such good care of our boy! We love you!
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