Monday, February 23, 2015

Yet Another Surgery-An Answer to Prayer

Haley and I traveled to Maryland again today for her post op appointment. This was our third trip in the past month. Dr. Henderson was pleased with her incision--it is healing well. He was also pleased that she has still not fainted since the shunt revision surgery. (Aren't we all?)

Anyway, we talked about her incessant pain, and he looked at the MRI of her low back that she had taken last month. This, along with the results of her urodynamics studies (to measure her bladder function) and her physical exam, led him to diagnose her with tethered cord. He explained that the spinal cord is held in place by a thin band of tissue, called the filum. In EDS patients, though, it is very thick and fibrous and can pull the spinal cord down, causing these type of symptoms (pain, urinary difficulties). I commented that I thought it was ironic that EDS patients who have defective collagen can have too much in their filums. He agreed that it seems counter intuitive.

He went on to explain the risks and benefits of the surgery and explained, in detail, how he would perform the surgery. He has done hundreds of these surgeries and has had very few complications. Of course, ultimately, we trust in God for the outcome (and Dr. H does, too--he prays with us before every surgery!)

As part of his exam, he pulled Haley's leg up a bit, and she let out a yell. He also poked her with a safety pin and she cannot feel much in her legs. She is in constant pain, and I, for one, am so hopeful that this surgery will greatly decrease her daily pain. He said that most people feel a good bit of relief immediately, but that more benefit can come for up to a year after.

We don't know the exact date yet, but will let you all know when it will be. Yesterday at church, many folks were saying how happy they were to hear that the fainting had stopped. They said they will continue to pray, and I asked many people to pray specifically for this visit we had today. I asked that they pray that Dr. Henderson would see the need for this surgery and agree to do it. Well, that it exactly what happened. Thank you and thank God!!

Friday, February 20, 2015

Pictures of Haley "not fainting"

As I promised, here are some pictures of Haley walking in the hallway at the hospital on Wednesday. It's hard to get the impact of seeing it in still photos, but, who cares? Here goes.

We left the hospital at 6:30 pm on Thursday, and the ride home was difficult for her. The bumps in the road really hurt her incision on her back, as well as her head, neck and legs, which are her "normal" pain areas. But she's a trooper and we got home at around 10 pm. She has still had no episodes of fainting! We will travel back to Maryland on Monday to see Dr. H for a post op appointment. Hopefully, he will want to discuss doing the other surgery (tethered cord) in the near future.

Thanks again for your continued support!

Thursday, February 19, 2015

Zero is a Great Number

Haley's shunt revision surgery went well on Tuesday. Dr Henderson was pleased and said that her spinal fluid was flowing briskly, indicating that her pressure had been too high. Haley had a good bit of pain after surgery and passed out twice in the immediate post op period. Since then she has not passed out at all!!! None on Wednesday and none so far today (Thursday). That's none, nada, zilch, ZERO fainting spells!!!!! After passing out 50-80 times a day for months, this is fantastic news and we are grateful to God for giving Dr H the skills to help people like Haley.

She is still in pain, which Dr H thinks is from tethered cord. We will discuss this on Monday at her post op appointment. If he thinks she's a candidate for surgical "de-tethering" we trust that her remaining pain will decrease (or even disappear!)

The staff at this hospital has been great. They are so knowledgable and kind. They are so used to taking care of people with this disease (EDS), so it is refreshing not to have to constantly explain things. One of the people told Haley yesterday, "other places you are considered a zebra, here you are a horse!"  It's nice to be a horse for a change!!

The PA, Bob came in a while ago and walked Haley down the hall. No faintiness at all!! She's as weak as a kitten from being in bed for so long, but it's just a wonderful thing to see her up and moving. Hopefully she will soon be able to do all the things a 22-year-old young lady should be doing!!

We are hoping that she will be discharged later this afternoon and I will post a picture of her walking in the hallway with Bob when we get home. I'm blogging from my phone and can't figure out how to get a picture on the blog if I'm not on my computer. Haha. At least I finally figured out how to finally blog!! Thank you all so much for your prayers and messages of encouragement to us. They mean the world to us.

Friday, February 13, 2015

Sometimes It's Good to Fail a Test

I thought it was time to give you all an update on Haley. She has continued to suffer from severe pain from her head to her toes (specifically head, neck, back and leg pain.) Also, her "fainting" has picked up again. She had a decrease in it after Dr. H took some fluid out of her spinal column, but it's back. As you can imagine, she is pretty discouraged. She knows that many are praying for her and she is encouraged by cards, visits and some gifts she has received. Such kind and thoughtful things have made a big difference. Thank you.
Yesterday was a big day. We traveled to Maryland again. This time, it was to see a urologist who Dr. H referred her to so that she could have some testing done on her bladder. Apparently, if the bladder is not functioning correctly, it points to possible "tethered cord." Well, as you can imagine, the tests were no fun. They had to fill her bladder and take measurement while it emptied. (I held her hand and sang to her-- "Fill me up Buttercup!" She wasn't impressed.) Between the embarrassment and pain, she persevered and got through it. (So proud!) Anyway, there was some sort of problem with the office, so the doctor was delayed. (Side note: what is it with doctors' offices in that area that stay open so late?) Anyway, we waited 2.5 hours in a small room for the doctor to review the test with us! Thankfully, our dear friend, Kendra, was with us. I could never have taken that trip without her! When the doctor finally came in, he asked Haley several questions and showed us the printout of her test. Bottom line: she failed. (Yay!) This points to the possibility of tethered cord. I have long suspected that this was the reason for her pain and fainting. If it is, it can be surgically corrected and, hopefully, both can be alleviated. Please pray for this.

Today she has her pre-op physical and blood work in preparation for her shunt revision surgery on Tuesday. She also needs to go to the hospital and have an x-ray taken of her back so that Dr. H can see the shunt placement before surgery. Finally, we have an appointment with the Social Services department to see if she qualifies for any type of disability coverage. Hopefully, she will get a little money each month, as she is not able to work and has no discretionary spending money. If it's more than a little, she can take care of some of her medical expenses.

If you're reading this early Friday, will you pray that she can make it through all of these appointments today? I can't tell you how difficult yesterday was for her. For someone with virtually no activity level to be out for 11 hours (we got home at 10:30 pm!) and constantly sitting up, was rough. At times, she faints continually, one after the other, which she did several times yesterday. Again, Sweet Kendra, rode in the back of the van and revived her with alcohol preps while I drove like a lunatic on those crazy Washington, DC-area roads. I'm glad to be back home where traffic is virtually unheard of.

I will update this blog after her surgery on the 17th. We do covet your prayers for her and for us as we care for her. I continue to have hope that the situation will improve, and I constantly remind her that "it's not forever." We are praying fervently that that is the case. Thanks in advance, all.

Thursday, January 29, 2015

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.

Thursday, January 15, 2015

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!

Friday, December 19, 2014

Dr. H, the thinker

Our visit with Dr. Henderson yesterday was a long one. The appointment was for 3 pm, but we waited a long time in the waiting room (he was running behind). We got out of there at 7 pm!  Haley passed out about 6 times in the waiting room in her wheelchair. (Once, I timed her as being out for 12 minutes!) Needless to say, it was a long, tiring day for all.

Dr. H was really stumped by her. He had the disc with the MRI of her head and neck up on the big screen when we got into the exam room. He saw no evidence of anything on the scan that would explain her symptoms. After much thought, including him leaving to go back into his office for about 30 minutes to think (per his NP, we were the only people still there, and he was "thinking"). He believes that she has two things going on:

1. He thinks that these episodes are not fainting at all, but are non-epileptic seizures (also known as "drop attacks"), where she loses muscle tone everywhere. This would explain why she can often hear during these attacks and can quote what was said while she was "out".  He thinks that the cause is due to mast cells activation syndrome. We are not exactly sure what that means, but I know that mast cells are important in immune function and it seems that they can go haywire to varying degrees. He speculates that her mast cells are attacking her brain stem, (his words) and he feels that this can be turned around with medications and a special diet.  He said that he sees this a lot in patients with Ehlers-Danlos Syndrome, which she has, and that he currently has about 100 patients with this. He prescribed many medications to "stabilize" her mast cells and he wants her to follow a low histamine diet (or even a ketogenic diet). This is a lot of information for us to process. I asked where the specialist for this condition is, and he said the best doc is in New York--(road trip, anyone?) We will plan to go up there as soon as possible, but the doctor likes people to be on the meds/diet for at least a month before she sees them.

2. He thinks Haley has "tethered cord syndrome", which is also not uncommon in EDS patients. She has chronic leg pain, neck and back pain, and some odd urinary symptoms. He poked her with a big safety pin, which she barely felt in her lower extremities, and checked her reflexes and muscle strength. He would like some further testing, such as an MRI of her low back and some special tests of her urinary system before he considers surgery to "untether" her cord.

This news was very difficult for Haley, as she was hoping that he could do surgery to help her to stop fainting, just like last time. Her life is so hard now, and she misses being able to do what she wants. To be dependent on others for everything (including bathing) is very demoralizing.

My thoughts are that this condition has been present for a long time. Dr. H listed the "triggers" for mast cells misbehaving, and one of them was structural problems. Haley definitely had a big structural problem before he corrected it, so I think that maybe her previous fainting was due to mast cell problems. Other triggers are stress, some foods, some medications, and environmental factors.

Even though I am in the medical profession, I must admit that I have some research to do on this condition, but for now, I am just trying to be her mom and support her in whatever way I can. We are grateful to you for your support as well. As we were in the exam room waiting for Dr. H to come back, I knew for certain that there was an army of folks praying for wisdom for this man. Our phones were blowing up while he was in with us, as many were calling and texting to find out what he said. We have had many Facebook messages from people saying they are praying for Haley and us. Thank you all for that. We are truly grateful.

Please continue to pray as follows:

  • For the "fainting" to go away quickly so Haley can resume her normal life and get out of the wheelchair and the hospital bed in the living room.
  • For her to be able to follow the special diet and for it to make a big difference.
  • For Dr. H to continue to think about her condition (I understand from his staff that he will continue to think and research long after his patients have left the office).
  • For Haley's pain to decrease.
  • For our family to know how best to love and support Haley through this difficult time.
  • For us to all know God's kindness in a new and clear way.