Glorious Scars

Today was a rough day for Haley. She has continued to have severe headaches, neck aches and pain in her back and legs. Tonight she started to have abdominal pain on top of everything else. Oh, and she has bouts of severe nausea. As Larry and I were about to leave tonight, she expressed that she is lonely and tired of this. It hurts our hearts to hear her and see her like this.

Dr. Henderson came in late yesterday afternoon and said that he wonders if she has encephalitis. He is always very calm, and he was that way yesterday (thankfully). He sat on the side of Haley's bed and rubbed her leg as he talked. He is really very kind and connects well with her. He said that we will have to wait until the cultures come back so we know what kind of infection she has. (They cultured the spinal fluid that they took at our local hospital.) I asked the nurse how long that usually takes, and she said at least 72 hours, possibly longer. So, we wait. And she is getting big gun antibiotics and antiviral meds. Also steroids. And pain meds. And nausea meds. And a ton of other meds that Dr. H wants her to have.

So tonight, when the overhead announcement came on saying that visiting hours are over and that we must all leave (I usually leave when I am good and ready, and NEVER when she is not settled!), we started to gather up our things to go to the hotel. And she said, "Mom, I'm lonely." It made me tear up seeing her so sick and so sad. I grabbed a notebook that I had with me and quickly wrote her favorite quote (the one that is on the top of every blog entry of this blog) and I found a roll of nurse's tape and I taped it to the trapeze bar above her head. She was grateful. I told her to read it over and over and that I would pray that it had new and deep meaning to her.

The quote says that "the  joy of your glory will be that much greater for every scar you bear." Haley will be one joyful, glorious lady one joyful, glorious Day. And I find myself really longing for that Day.

 Haley hanging on:

We are so grateful for all of you who have prayed. It has truly been our sustenance. Please continue!! Sometimes it really hard to imagine how things will one day get better. Thank you, again, for your constant support. 

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!!

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.

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.