My day with “Christian” looked like this…..
Left at 6:30 am for the Hemophilia Treatment Center (2 hour drive to Albuquerque)
9:00 am appointment
The hematologist accessed Christian’s port and we thought all was well (I was not able to access it the night before and my husband is out of town…..I had no back up)
When the hematologist left the room, I mixed factor to infuse before we headed home….the port would not work.
Between me and the hematologist, we attempted to access the port at least 8 times. No luck.
The screaming was from deep down….Christian has an intense fear of needles. A boy with hemophilia that has a fear of needles is not an easy situation. I had to help hold him while the doctor was manipulating the port and every time I held time down, a piece of my heart broke. The shuddering took over his entire body…the tears flowing like a river. His cheeks were bright red, and there was nothing I could do to take away the pain.
The x-ray showed the port at a severe angle and we thought we had it figured out.
No luck.
An IV was started, because we had to get factor in Christian. He has a high titer inhibitor and needed to be infused.
3:15 pm the decision was made to replace the port. (This is Christian’s third port).
We were allowed to leave the hospital, drive back home (2 hours), packed our bag, took the dog to the dog sitter, went by the church to get a couple of things and fold bulletins for Sunday morning (because hubby is out of town) and then me, Christian and Lance hit the road back to Albuquerque (another 2 hours).
9:20 pm arrived at hospital and waited for room to get ready. While waiting, I mixed factor to infuse, and the IV blew.
Could the day get any better?
9:50 pm our room was ready, my husband walked in, we were all together and a specialty nurse came up to our floor to start a new IV (two sticks).
Now I am listening to the beep of monitors, looking out an all too familiar window, while smelling “hospital.” I am comforted by the familiar faces of the nursing staff, and even the workers in the café downstairs that have become friendly to me in the wee hours of the morning.
I am thankful for the familiarity, the comfort in knowing my child is in great hands, but I have yet to truly “feel” the events of the day. I am little scared to let myself completely give in to what happened today.
