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.

Back to Dr. H

Things have gone from bad to worse for Haley. She has had several episodes of her "fainting" spells coming one on top of the other. She has been taken by ambulance twice to the ER, only to be sent home after getting IV fluids. Sometimes she can go a pretty long time (close to an hour) without passing out; other times I've timed the passing out at every 30-50 seconds. This is so difficult on her and on us. She cannot be left alone at all. Yesterday, she began to vomit while she was passed out. Even though I am a nurse, I was ill-equipped (literally) to make sure her airway was secure. It is really easy to aspirate liquid into the lungs when consciousness is altered.

Phone calls were made to Dr. Henderson and he would like to see her at the hospital in Maryland to do a procedure to check her spinal fluid to try to find a cause for these spells. We will travel to see him on Wed. Jan 21. He will likely keep her overnight and do other tests. Please pray for an answer and a remedy for her.

Our family has also suffered another difficult trial in the past few days. My mother passed away in her sleep on January 5th and we all (except Haley) traveled to Long Island for the funeral. This was a big shock, and very, very difficult for me, especially. I have postponed the start of my semester of grad school until things calm down at home, but I am anxious to get back, as this is my final semester and I am hoping to graduate on May 7th. For now, we all live moment-to-moment, which is a challenge. We are relying on friends to come and stay with Haley so that we can run out to do a quick errand here and there, and we will be hiring folks to stay with her so that we can work and so that I can be at my practicum site.

Will you pray for us? Haley feels so isolated and discouraged. Just last evening, she had several friends stop by for a visit, and it really boosted her spirits. Please pray for:

• Dr. H to figure this thing out and correct it
• For Haley to tolerate the procedure and the travel to and from Maryland
• For Larry and me to have the resources and stamina to care for her
• For friends/family who will offer to help us care for her
• For us to see God's hand in all of this, even when things are so bleak.

As always, thank you for your concern, support and prayers. They are keeping us afloat!