Wednesday, April 3, 2013

Chemotherapy Week #3

Brayden had three different appointments yesterday, and while we didn't get any great news, we also didn't receive any life shattering news. Brayden did pretty well considering we left the house at 730 and didn't get home until almost 2:00.
The hearing clinic informed us that Brayden still has fluid in his ears, which means we still do not have a baseline assessment of Brayden's hearing. I have to say that I am very annoyed with having to pay a $50 copay for them to tell me that he still has fluid in his ears!!! They have done this to us 4 times now and I am losing have lost my patience. Brayden has an appointment with an ENT specialist on Tuesday so I am hoping we can get this issue resolved.
Then we went to get Brayden's vincristine (chemo). He flirted with the child life specialist Elizabeth and didn't even flinch for port access. Our NP checked in with us to see how things were going, and gave us our lab results. The good news is that his ANC, which is his count that is directly related to his infection fighting ability, is going up and is no longer critically low. He is still at risk for infection, but he is a lot better off that he was last week! His hemoglobin, which are red blood cells that carry oxygen, are still dropping. He was 8.4 which is low, but not low enough to require a blood transfusion. Our oncologist does not transfuse unless this number is less than 7. His platelets, which help the blood clot, are also still dropping. He was 75 this week which is low, but also not low enough to require a transfusion. If he drops to 50, then he is a higher risk for bleeding. I did notice some blood on his shirt and he has a bruise from his port access which he has never had before.  I am assuming that is related to the drop in platelets.
After chemo we packed Brayden in the car and headed over to the Broadway clinic for his eye appointment. The nurse asked the same questions I have answered over and over and again. I mean really, can't you at least glance at his H&P? After she was done she put some drops in his eyes to dilate his pupils and then she tried to send us to a tiny waiting room packed full of kids waiting to dilate as well. Did she hear me say he had chemo this morning? or that he was immunocompromised? After again explaining to her that he was on chemo and at risk for infection, she decided that he could wait in his exam room.  While we waited we walked a lot of laps around that exam room and cuddled. He had just gone to sleep when they came back. 
 Then a resident came in, examined Brayden, and then she went to get her attending. The attending wanted Brayden to do all the things he did for the resident, but he was much less cooperative given he was losing his had lost his patience. As she was trying to hold his head still I started to wonder if she would leave a thumb print on his forehead. She finally decided she had what she needed..... We were told that he has optic nerve damage to both eyes equally, yet he doesn't see as well out of the left eye as well as the right eye, but she doesn't really know why. She mentioned that it could be from the hydrocephalus, or the coding at birth, or who knows? She also told us that his left eye drifts inward and doesn't move out as it should which is causing him to turn his head look left. Her treatment plan? Patch the right eye for two hours everyday, and come back in a month. If we see no improvement then her plan is a surgery to help straighten that eye. She clearly didn't read missed the part of his history about his inoperable brain tumor. Why would I let them do a surgery to correct that? His quality of life is not affected by having to turn his head to look left...... he is compensating and as long as he is happy, then I am as well!

Today we went to see our primary care physician Dr P for a well baby check up. It was nice to see Dr P and the other staff from our NICU experience. I was again suprised at the care and compassion that was shown towards Brayden and myself during our visit today! Today was the first day I did not find myself emotional and fighting back tears when someone asked "How are YOU doing".

After running a few errands, Brayden and I headed back home. As we were driving home I had some time to reflect because Brayden was napping.... I cherish everyday that I have spent with Brayden and I wouldn't give any of them back, but I also have never been more relieved to see the month of March end and April begin. Maybe this is because in my mind March will always be the month that I was told that I would outlive my baby and I found my world falling apart around me. April also brings the promise of spring weather, sunshine and lazy afternoons at the lake with my family. Those are memories I am excited to make with Brayden! 

1 comment:

  1. Many prayers for your sweet little Brayden. I am not sure if you can talk your dr.'s office into doing this, but I used to give my cell # to the nurse and tell her that we were waiting in the car with our little one who was a 28 wk.preemie. She could call us when it was our turn and we would be right in. It kept us from waiting in those germy waiting rooms.