Another Surgery

Thought I write another update:  Haley had a tough time recovering from her lumbar puncture (or LP, commonly known as a spinal tap.) She could barely move without excruciating pain for about 4 days. She couldn't even get out of bed to use the bathroom, so we resorted, again, to the bedpan. Dr. H called on Friday to check on her and he specifically asked about the fainting episodes. We realized that they were quite less frequent--about 5-10 times a day versus about 40-60+ times a day before the LP. He had checked the pressure around her spinal cord during the LP and told us that it was high, so he took off some fluid. The fact that her pressure was high, combined with the fact that her fainting was made better when the pressure was lowered, made him realize that 1) her shunt is not working and 2) he needs to do surgery to repair the shunt. So, he has booked her for  surgery on 2/17. It seems a long way off, but I'm sure the days will go by fast.

Dr. H also suspects something called "tethered cord," which is where the spinal cord is pulled down too tightly at the lower spine. This is not uncommon in folks with EDS, and gives symptoms like Haley has been experiencing. In order to diagnose this, there are some tests that must be done, especially bladder tests. Once these are done, Dr. H will decide if she needs her cord "untethered." The tests have been scheduled for 2/12 in Maryland with a urologist who Dr. H uses for many of his patients. I understand that this is not a "fun" test, so prayers would be appreciated.

Based on some conversations I have had with others with similar conditions, I believe that Haley has tethered cord and that if it is corrected, she will have a great improvement in her symptoms. Will you pray that this is the case? We all want to see Haley return to her "normal life" as she is tired of living in a hospital bed and needing constant care.

I have had some wonderful people come and stay with her so that I can continue with my schooling. I have dropped my part-time hours at the hospital to prn (as needed), so I will be working even less. This will ensure that I get my practicum hours in so that I can graduate in May.

Thanks to so many of you for your encouraging messages to Haley and to our family. I especially appreciate all of the sympathy cards we received following the loss of my mother. They are precious reminders that we don't walk through this dark valley alone. We are grateful.