Sunday, March 22, 2015

What a Week!!

I know that many of you are aware of what went on this past week, but many (who are not on FaceBook) have asked me to post an update. So here goes...

Ten days ago, I was helping Haley with a bath, and when I went to wash her back, I noticed that her incision looked more puffy than usual. The next day, I brought her to our family doctor, who agreed that it looked like it might be getting infected. She was put on antibiotics. She had been running a fever, and the next day, it was higher, and her incision hurt worse. She called the doctor's office and the nurse said to come in right away. I was at practicum (for grad school), so the lady who was with her took her. Meanwhile, I called Dr. H's NP and she said that she would try to contact him (he was in the OR). He called me and found out that Haley was at Dr. Marsh's office, so he asked me to text him Dr. M's number. He called just as Dr. M was getting ready to lance the incision. He agreed with this and when it was opened, clear fluid came out (lots of it.) It continued to leak that evening, and the next day, Dr. M came to the house to change the dressing and change the drain that he had put in. When her removed that drain, a huge gush of fluid came out (it looked like when a baby is being born!) Her fever went up and up. (Got to 103.8)

The next day, Dr. M again came to the house to change the dressing (Who has a doctor like this??) and he decided to call Dr. H. It was decided that we should go to our local hospital to have some blood work, chest x-ray and urinalysis done. All were normal, and the ER doc called Dr. H to let him know. He then wanted a spinal tap (LP) done, which they did with CT scan guidance. When they did, there was very little spinal fluid in her spinal column and there were white blood cells in her spinal fluid (not normal.) At that point, it was decided that Haley needed to be transferred to Maryland to Dr. H's hospital. They called an ambulance, and we left Harrisonburg at 1:00 am, following the ambulance all the way. We arrived at the Maryland hospital at 3:15 am and they put Haley in isolation. (Note: technically, when there are white blood cells in the spinal fluid, it is considered to be meningitis, although in this case, they said it was viral, so not nearly as serious as bacterial) Dr. H was notified, and Haley was finally put in a room. Larry and I were very tired, as we hadn't slept all night, but he did fall asleep on the tile floor in the ER (which I could not make myself do!)

Anyway, at about 8:00 am, Dr. H came in and said that he had had a cancellation and he was posting her for surgery. She went to the OR at 11:45. He came out a few hours later and said that all went well. The valve on her shunt had completely disconnected from the shunt, so fluid was flowing straight into her back, and out onto the sheets, etc. He said that he had never seen this happen before. (Imagine, Haley with something unusual...)

She stayed in the hospital until Wednesday evening, and has had a terrible headache and neck and back pain since. Yesterday she started with a fever again, and when Dr. M found out, he ordered the PICC line (that she still had in) removed. He believes that it is infected. He told her that she will probably have this awful headache for another two weeks and that she will feel terrible body aches too, from the meningitis, for as long. (This is the part where I find myself saying, "Can't this kid get a break?" but I try to just roll with it. Some days are easier than others.)

So there you have it. Would you please continue to hold her up in prayer? She is scheduled for tethered cord surgery on April 14th and I hope this is all cleared up by then. Also, if I can be so selfish as to ask for prayer, please pray that I can get all of my practicum hours in by the end of the semester. I am in grad school to be a nurse practitioner and am scheduled to graduate on May 7th. I'm grateful for the many who have volunteered to come and sit with Haley while I am out, and it's been a comfort to know she is not alone. Also, many have brought meals by, which has helped us tremendously. Your love and concern are greatly appreciated!

Here are some pix of our latest adventure:
Our view for 2.5 hours as we traveled to Maryland

Haley in the holding area awaiting the doctors before surgery

Our sweet friend, Gary, came to see Haley. He is a special friend of hers and has faithfully visited her throughout her illness. Imagine how happy she was to see him in Maryland!!

Saturday, March 14, 2015

Prayers Needed for a Setback

Haley has had a little setback this week. On Wednesday, I noticed that her incision from her most recent surgery looked more puffy than usual. She was also running a slight fever so I took her to our family doctor, who put her on an antibiotic. The next day, her temp went even higher, so we took her back to Dr. M ( our PCP)  Eventually I called Dr. H and he asked for Dr M's phone number. They talked and it was decided that Dr M would lance the incision.  When he did, a huge amount of clear fluid came out. Apparently she has developed a seroma, which is a collection of fluid that can arise after surgery. For a while it looked like we may have  to go back to Maryland to Dr. H's hospital so he could see her, but for now we don't have to go. Today her temp went up to 103.5. Dr. M came by the house and changed the drain. When he pulled out the old drain, there was a gush of fluid once again. Haley has been leaking fluid constantly with no end in sight. She is lying on towels and we are changing sheets a lot. If her temp is still high, she will probably have to go to our local hospital tomorrow for some tests to see what the source of the fever is. Please pray that the temp stays down and that the fluid stops flowing. She also has a lot of pain from this. I want to say, "how much can one girl take?" but it isn't helpful. We are one month from her tethered cord surgery, so it would be nice if this thing cleared up. Soon. Thanks in advance. We are grateful for all of the prayers we've had.

Tuesday, March 10, 2015

Countdown to Surgery

Haley's surgery has been scheduled for April 14th. She is disappointed that the wait is so long, and I have tried to encourage her, telling her that the time will fly by. Her physical condition has improved, as her fainting has decreased dramatically. But her pain has gotten worse. We are not sure why, but she hurts throughout her entire body (head, neck, legs and back) and at times she can hardly endure the pain. In fact, sometimes when she cries, her breathing gets fast and shallow and it causes her to faint. (So discouraging...) I feel so sorry for her.

Tonight I decided to make her a tangible device to count down the 35 days until her surgery. I made a wreath with 35 Lindt truffles on it plus a pair of scissors so she can snip one off each day and have a sweet treat. When the truffles are gone, it's time to leave for Maryland. Here is a picture of it:

Some details: She will be having tethered cord surgery. Dr. Henderson will "untether" her spinal cord from the fibrous connective tissue that holds it in place. This tissue is extra fibrous in EDS patients and the surgery sounds pretty tedious, but Dr. H has done hundreds. He believes that her pain and bladder issues are due to the tethered cord. Also, she has weakness and decreased sensation in her legs. From what I've read, most people who have had this surgery have experienced a tremendous amount of relief right away. Dr. H says the relief can continue for up to a year. This is very hopeful news. Haley has suffered so much for so long.

Won't you pray for her to be able to hang on for these 35 days? And, of course, please pray for the surgery itself. We don't take one of these surgeries for granted. Dr. Henderson is very gifted and has used his gifts to help many people, including Haley. This will be her 4th procedure with him, but we (and he, I'm sure) covet your prayers for him and for all aspects of the surgery. Thanks so much for all of your continued support. We so appreciate it.

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.