Abby's last spinal tap on Tuesday showed Abby's intracranial pressure was still elevated. The increase in medication to control it did nothing to bring it down. Abby's pressure was 25, the goal is 8-12.
The spinal tap Tuesday did very little to relieve the pressure. The doctor hit a blood vessel as he was puncturing the membrane that encloses Abby's spinal column. Then the needle slipped out of place before he could remove enough extra fluid to help reduce Abby's pain.
Abby is still spiking temperatures at least once a day. Her doctors require that she go to ER and have blood cultures drawn every 24 hours when she is having fevers.
We are back in ER now for headaches, a fever and extreme constipation. Abby is grumpy, hurting and very hungry (they wont let her eat). Usually Abby handles the medical stuff gracefully. Today, she just wants to be home with her whole family.
I am not sure what the plan is or why we are having more trouble handling this last few weeks. It is ridiculous that this is so hard for me. I have a friend whose daughter is in the hospital waiting on her 5th surgery THIS year to "fix" her intercranial pressure. I think this will be her 9th brain surgery over all. Please pray for Avalon, her family and her medical team. They are not sure what to do to help her. http://www.caringbridge.org/visit/avalonhavan
We have it easy compared to them. We feel guilty for feeling so weary when little Avalon has it so much worse than us.
I'm writing several hours after Michelle drafted the above. Abby has been admitted with a serious impaction, her entire colon packed full. If you know anything about impactions, it's potentially very serious, more so for someone who has little immunity already. Lots of infections and junk can come from it. It's kind of amazing given all the mineral oil and Miralax we've been pumping down her.
Michelle and I didn't even want to post yet another "hospital again" blog post. It's getting to sound like a broken record that's been broken. But we know that so many people have been following Abby and praying for her over a couple of years, and we owe to you to keep you updated.
To make matters more pressing, I have a planned and extremely important business trip this week. One the one hand I would never leave a child in the hospital; on the other hand, when you've had a kid in the hospital almost 70 times in two years, you have to pick and choose your battles because I still have entire family to provide for.
Thank you for your prayers for wisdom, provision, health and peace.