Big Secret Revealed

Extreme Makeover: Bedroom Edition

Today was a wonderful day. I have been keeping a big secret for a long time and today it was revealed. First some background:

Several years ago Haley asked her dad to paint her room red. I'm talking dark red. I was not at all a fan of the idea, but she explained to us that because of her migraine, she wanted a dark color so she could go in there and rest without the light hurting her eyes. So, of course, her dad complied. I always hated the color because it seemed more like a cave than a room. She had mentioned to me that if her migraine went away, she might want her room to be yellow.

A few weeks ago, I made a call to the "Head Angel", Karen, and asked her if she knew of anyone who was uniquely gifted with decorating as I was thinking of getting her a new bedspread and maybe a few throw pillows. I would be happy to fund the "sprucing" but I didn't have a flair for decorating.  I wanted to spruce up her room for when she would be able to get back into it. (She's still in the hospital bed in the living room because the stairs are just too much and, frankly, not safe.) I thought that I may be able to persuade my painter husband (summer-only painter, teacher the rest of the year) to paint her room for her at some point.

The next thing I knew, there was a full-scale makeover planned for the room. There were over 30 people involved and boy did they get going. The whole operation was spearheaded by Kristin, who is an amazing decorator. Larry was able to paint the room to coordinate with the new quilt that they bought. Curtains were bought and hung, as were lamps, a pillow, a throw, several picture frames, and various other tidbits. There are even plans underway to re-carpet the room thanks in part to Donna speaking with a local carpet company who is willing to carpet it at a discounted price! (Thanks, Weavers!!) Needless to say, this army of angels have been hard at work. Some were able to provide ideas, some hands-on labor, and some financial backing!

Needless to say, I have become a wonderful liar! Who knew I was so good at it. I have told Haley more lies in the past few weeks than I have in her whole life! I so wanted to keep everything a secret so that she would be surprised and boy, was she!!

On July 17, while we were in Maryland seeing Dr. Henderson, folks were at our house taking Haley's furniture out of her room so it could be painted.  Also, John W. came to install a new curtain rod. Karen and Kristin came by to drop off the bedding. On the way home from Md., I was texting Kristin to see if John was out of the house yet. She suggested that I might have to make up a story about a leaky toilet to explain his presence if he was still there when we got home. (What's one more lie?) He was gone and she suspected nothing.

So here a just a few of the before pictures. Actually, Larry was already in the process of painting and the furniture was already piled in the middle of the room.  Notice the color of the walls and of the furniture.

 

Now here is the finished product. Notice the framed things over the bed. They are things like ticket stubs from Broadway shows, pictures of some of her favorite people, a favorite verse, her most recent letter from Joni, a head shot of Lea Salonga (her fav Broadway actress), the Hunger Games dude, who is her celebrity crush, and her picture of zebras (medical oddities are referred to as "zebras").  Each of these treasures was smuggled out of the house by me and given to Kristin, who, with the help of others, matted and framed them (Kathy was the mat queen!)

 

 

 

This kind of says it all!!

So today, Burress, our church's music minister, and his family came over to sing with Haley, as he has been doing weekly since she's been sick. He mentioned to her that he had asked a few other people to join him. Haley didn't know that these were many of the ones who had re-done her room. We sang and some ladies (Donna and Julie) set up a party bagel in the kitchen (that was Haley's idea--Let's feed the singing people! haha). After we sang, Kristin gave her a card with the names of all of those who had a part in the project and then the card said for her to go up to her room. She looked puzzled, but with the help of Larry and some of the men, she ascended the stairs... slowly. Her sister Paige and I had sneaked up ahead of her to snap some pictures. Here is her face when she saw her "new" room.

What a great day. Before she even knew about the big surprise, she read a passage of Scripture and thanked everyone who was there for supporting her so well along this journey. What a sweet time we had. She told me later that she wishes she can spend time in her new room. I sort of wish we had an elevator in the house so she could!! But, as I told her, she is getting stronger every day and will be climbing those stairs in no time.

I know this was a long post, but I had to share all that has gone on here. It's really been over a month's work! Thanks to all who had any part in putting this look on her face! Our family continues to stand in awe of all that God has done and thankful for who He has used!

The Smile Is Coming Back!!

Stronger Every Day

Haley is getting a bit stronger every day. She is walking around the house with her walker and even though sometimes her legs give out, and she gets tired, she is able to go where she wants. She has not fainted once since the surgery. Her headache is still there, but it is manageable with the medication that she is on.

This evening her older brother Ryan came to visit along with his dog, Cosby. She was able to walk to the corner, which is only one house away, but it was just great to see her walking. Our neighbors came out of their house and were so pleased to see her walking. After the walk, she was exhausted, so she and Ryan sat on the edge of the porch and talked. So sweet. Of course, I snapped a picture.

Zipper Dee Do Dah

I took a good picture of Haley's incision tonight, so I thought I would post it here. I have taken several photos of her incision, but most were emailed to a doctor or two, and they were definitely not appropriate for this blog (infection is something no one but medical professionals want to see--trust me!) As you may remember from an earlier blog, people who have had this surgery refer to themselves as "Zipper Heads" because the scar looks like a zipper. So here it is:

Pretty impressive, huh?

In keeping with the "zipper" theme, I have a bunch of zipper bracelets in many different colors. I thought it would be nice to make them available for folks to wear in honor of Haley. I have been wearing a few for some time and I use them as a reminder to pray for Haley whenever I feel it on my wrist. If you want one and can give a few bucks for it, we will use the money toward the hospital bills. Here is a picture of my wrist with three of them on.

If you're interested, just let me know. If you're local I can just get it to you. If you live out of the area, I can mail it to you.

Thanks for your continued support. Today marks four weeks since her surgery. Wow. I can hardly believe it. I will continue to update this blog because so many have been so faithful to pray and so many want to know what's going on.

We feel so blessed to have gotten this surgery for Haley. We know that it is only the grace of God that led us to this particular diagnosis and doctor. We also recognize that God used many of you along the way. We had financial help even getting to see Dr. Henderson, as well as help with the expenses involved with getting to Maryland and back. We absolutely could not have done it alone. As I read the Face book page of others who suffer with the same (or similar) conditions, I see that many are trying desperately to get to one of the two or three doctors in the country who know how to operate on these type of patients. It breaks my heart to know that many people are having to have bake sales and auctions to raise funds to get across the country to have the same chance of a solution that Haley has had. We are so, so blessed. So we may have to raise funds to pay for the hospital  bill, but that's a much better position to be in. Our daughter has already had her surgery. She is already beginning the process of healing. That makes anything we have to do feel like a small task in comparison!

Thanks for walking this road with us. We are so grateful!

Good News

Another MRI

We left early this morning to go to Maryland. Haley had an appointment at 10:00 for an upright flexion and extension MRI of her cervical spine. We arrived just a few minutes early and she was taken back for the MRI. She was in there for over an hour, and she said it was quite painful as they had her tip her head way back and hold it there while they got images. Then she had to bend her head way down and hold it while they took more images. They brought her back to the lobby and we waited while they burned two copies of the CD--one for us to keep and one for Dr. Henderson.

Here's a picture of her waiting for the CD.

Off To See The Wizard

Next we traveled about 30 minutes to Dr. Henderson's office. He has many nicknames that I've seen on the face book group of his patients, among which is "The Wizard". He's also called "Superman" and an angel, among other terms of endearment. When we arrived, Haley walked from the parking lot all the way into the office, which is in a high rise building, so it's not a short walk. She was tired and in a good bit of pain, so the sweet nurse asked her if she wanted to lie down. She said that she did, and we were escorted into a small office with an exam table in it. We waited for a while, and while we were in there, I noticed a model that showed the hardware was placed in Haley's skull and neck during surgery. I snapped a quick picture because I thought some of you would want to see what she had done. This model only showed fusion to C2, but hers was to C1 and C2.

 

Pretty impressive, huh?

 

 

Encouraging News

 

 

Dr. Henderson was really pleased with how Haley is doing overall. He popped the CD into his computer, and took measurements. It seems that she has two areas in her neck that have some instability. These are between C4 and C5 and between C6 and C7. He took measurement and said that the "pathologic threshold" (where surgery is warranted) is 11.5 degrees of movement. Hers measured 11 degrees, so not enough for surgery at the present time. Yay. This is good news. He also showed us that the bone he added is growing well and that her brain stem is really straight!!  This is great news. He was delighted to learn that she has not fainted one time since the surgery.

 

So Why The Headache?

 

That was the question. He gave two reasons for the headache. First, the instability causes the type of headaches she has (along with the occasional vomiting--who knew?). He asked her if the headache was worse with the neck brace off, and she said that it was. (He didn't seem surprised.) He asked her where her head hurt and she showed him where it is the worst. He said it is from TMJ dysfunction. The neck brace is causing her to clench her teeth, which is putting a great deal of  pressure on her TM joints. The pain is not felt at the joints themselves, but elsewhere in the head. He wants her to get a bite guard and to stop wearing the neck brace ("unless she's riding in the car with her mother driving!" Ha ha. He's such a comedian.) He also wants her to begin physical therapy to strengthen her neck muscles, work on balance and core strength and also improve her posture. He said that when she gets stronger and consistently holds her head up straighter, the headache due to instability will improve. He also put her on an exam table with the head of it at 45 degrees. He asked her what that did to the headache, and she said that it improved it. He said that this was proof that she does not have a spinal headache. If she did, it would be worse even at a 45 degree angle.  He's a pretty smart guy, and he really seems to have a genuine affection for Haley. He will see her again in 6-8 weeks. Of course, with the Ehlers-Danlos syndrome, we know that she will be inclined toward instability for the rest of her life, so we assume that she will probably need fusion at other levels in her spine. But for today, this was really good news.

 

Here is a picture with Haley and Dr. Henderson

 

He told me he was going to charge me for taking this photo, and I said that I was sure we had already more than paid for it!! (Take that, funny guy!) He really is a dear man and we believe that God is using him in the lives of many people like Haley who have suffered for so long.

 

Thanks for your continued support. We have renewed hope for Haley. The road will likely be rough, but God is faithful!



Strength in Weakness: Haley's Amazing Statement

Headache Continues

There is not much change in Haley's condition. She is still suffering from the headache, neck pain and pain where the shunt is. Her spirits are good, though, which is a relief. We travel to Maryland on Wednesday to see Dr. Henderson, and I have been trying to predict what he will say. (Those who know me know that I like to be prepared.) So I have narrowed my guesses down to these: 1) He will say to wait longer for the blood patch to work. 2) He will suggest that we repeat the blood patch. 3) He will suggest that she needs fusion further down her cervical spine. Or 4) He will suggest surgical repair of the dural tear.  I have no idea if any of these are truly possibilities, but these are my best guesses. Please pray that we will be prepared for whatever he has to say. Also pray that he will possess extra wisdom to figure out what to do.

"I'm So Honored To Have Been Chosen For This"

Last night Larry, Haley and I were having family devotions (which just consisted of each of us reading Bible passages that were meaningful to us aloud to one another). We began to discuss the fact that we are hearing from so many people who are following this blog and how humbling it is to find out that so many (even folks we don't know) are praying for Haley and our family. Our family has been blessed with a strong faith and the deeply held belief that all things are under God's sovereign control and that He does everything for His own glory. We talked about what God's ultimate purpose in this journey might be (yes we really do have these type of conversations for fun! Haha!). Haley read the following passages:

"If I must boast, I will boast of the things that show my weakness." 2 Cor 11:30 and  "Three times I pleaded with the Lord about this (she inserted, 'three times? How about three thousand times?'), that it should leave me. But he said to me, 'My grace is sufficient for you, for my power is made perfect in weakness.' Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me." 2 Cor 12:8-9

It was then that Haley said the most extraordinary thing.  She said, "I'm so honored to have been chosen for this." At first I couldn't believe this had come out of her mouth. She went on to say that she felt that it was a special privilege to suffer so that God could be glorified. It's times like these that make all the pain tolerable. Of course, we all have our moments of doubt, fatigue, sadness, etc. and there is nothing anyone in our family would not give to get her well, but it made me grateful that God has gifted us and especially Haley with a deep, abiding faith.

Most people don't know this, but in the days leading up to her surgery, Haley was convinced that she would not survive the surgery. This was much more than fear or apprehension, it was a deep-rooted feeling that she would die during surgery. The night before surgery, we were in the hotel and she was sharing these thoughts with her brother Kevin. He opened his Bible and read a passage from the book of Revelation. It was a description of Jesus on His throne and Kevin went on to say to her, "Hafe (that's her childhood name that her brothers still call her) you can't lose here. Either you survive the surgery or you are in the presence of Jesus. It's a win-win either way." I was surprised at his frankness, as I was much more comfortable reassuring her that she would come through surgery fine. But Kevin chose the logical approach and she seemed to respond well. As an aside, her first words to Dr. Henderson after surgery were, "I'm still alive."

Here is a picture I took of Kevin having this conversation with Haley.  His wife (Hailee) is in the background.



 

So Blessed

We have been so blessed by the support of our many friends, family and even strangers. We have heard from some in the area who suffer from the same or similar conditions as Haley. We have heard from friends of friends who want to help in any way. We have a friend who would like to do a fund-raiser, and just yesterday I heard from a friend at my work who wanted my permission to do a fund-raiser at work. We have gotten very generous donations on this blog site, and we are so very humbled. We still have "Haley's Angels" coming to the house to sit with her so I can work and run errands, etc. So many people are praying for Sweet Haley, and not a day goes by that she doesn't get at least one card in the mail. And, of course, Haley's siblings and their spouses have loved her and us well for many, many years.  I must agree with Haley. Even in the midst of this excruciating trial, I can say we are so blessed.

The Healing Continues

Blood Patch Part 2

We went back to RMH on Friday morning for the second attempt at the blood patch. I must first say that the front door greeter, John, at RMH is a gem. They definitely have the right man for the job. He greeted us on both days and did everything in his power to make her as comfortable as possible. I pulled up to the front door and got a wheelchair for her. He took it from me and wheeled her right to a couch and tucked her in with a pillow (which he told her to keep). She had brought along her fuzzy purple blanket (smart girl-it was freezing in the radiology department), and John made sure she was able to lie flat to minimize her headache. He hand carried her paperwork to admitting and made sure the ladies there knew that I would be registering her, as she was unable to do so. He then escorted me to radiology and told those folks the story. He pointed to Haley on the couch and made sure they knew that she needed to stay flat. When we came back on Friday morning, he looked at me with furrowed brow as if to say, "Why are you back?", and I explained that they couldn't get blood the day before. He seemed really touched to see such a young person struggling with so much. (Sometimes I get the impression that people are thinking, "This could be my child.") He sprung into action again, an did exactly the same thing as he had done on Thursday. I  plan to write a letter to the CEO of our hospital letting him know how wonderful John is. This is customer service at its finest. Here's a picture of Haley tucked in on the couch in the lobby of our beautiful hospital.

The blood patch went off without a hitch. They were able to get the blood and insert it into her spine. She tolerated it very well, and we were home in just two hours. See below for more on that.

Some Improvements

Haley is making some improvements. We notice that she is moving better, but she is still very weak. On Friday afternoon, I convinced her to climb the stairs to take a shower. This was no small feat. Our staircase is 14 steps and pretty steep. I have several bad memories of Haley and the stairs (she's fallen down them on many occasions-and I mean the entire flight), so it was scary for me and I'm sure for her. My friend Bonnie agreed to come over to help bathe her. Bonnie is very wise and very adept at most everything. She arrived with a new hand-held shower head and a shower seat. She then proceeded to install the shower head! I was impressed. Finally we got Haley and she had the equivalent of climbing the Matterhorn before her. She took her time, but I was so afraid that her legs were going to give out. (They've done that a handful of times since her surgery and she collapses. Very scary.) She made it to the bathroom and was just pooped! She went through the demeaning process of allowing two women to bathe her. She was so tired and in pain. Plus she couldn't bend her head down or twist so she was limited in how much she could help us.

When it was over, we dressed her and she wanted to go straight back to bed. Bonnie very gently combed out her hair, taking pains not to touch her scalp as she has several painful places (I suppose from the "tongs" they used to keep her head still during surgery) and a pretty large numb/sore place near the crown of her head. Our doctor thinks it's referred pain from a nerve that was disrupted during surgery. Anyway, she was really sensitive. Poor thing. To be so young and have to go through all of this is hard for me to watch.

Here is a picture of "Fix-It Bonnie" installing the new shower head:

Her neck incision is looking better. It seems the antibiotics are doing the trick. Her steri-strips are coming off on their own and the many incisions are healing. The spinal headache is still a challenge. The blood patch went well on Friday and she got a tiny bit of relief from it. She held her thumb and index finger about an inch apart to indicate how much it helped. The radiologist said that if it was going to work, she would feel some improvement within the first hour. That was disappointing for all of us. But, Dr. Marsh came by on Saturday morning, and he said it can take up to several days to see improvement! So we are holding on to some hope that she still may get some relief.

How to Pray

Please continue to pray for Haley for patience as she waits to feel better. For the CSF leak(s) to heal, for the muscle pain in her neck and back to go away, and for all of us to count our blessings every day. It's so tempting to just focus on the now without remembering how far she has come. It really does our hearts good to see her walking around the house with her walker, and to think that just a few short weeks ago she was unable to put her feet on the floor without passing out.

On Wednesday, July 17th, we will travel back to Maryland for her post-op appointment with Dr. Henderson. Please pray for safe and relatively comfortable travel. I don't know what he will say about her spinal headache, but pray that we are ready to hear whatever he does say. We have a great deal of trust in him and are forever thankful that God led us to him. The surgery really made all the difference in her life. To be able to walk again is HUGE, even though for the time being, she is suffering with pain.  Thanks, all, so very much.

The Low Lows and a Very High High!!

Difficult Days

The days have seemed to go on endlessly with little change. Today we got word that the blood patch could not be done at our local hospital and that we would have to travel back to Maryland. This was quite a blow for us. I couldn't even imagine how I would get her up there, as it is hard for her to be upright for any more than about 3 minutes without her headache becoming very, very severe.  Some phone calls were made, and Dr. Henderson clarified the type of order and it was determined that our local hospital could indeed do that type of blood patch. What a relief. It is scheduled for some time tomorrow (although we don't know the time yet.)

House Call

Our doctors have been known to make occasional house calls (I know y'all are jealous!) and tonight Dr. Schubert did just that. He wanted to see her incision with his own eyes. He thought it looked a bit better than the picture I sent him, but wants us to continue with the warm saltwater compresses and the antibiotic. He also said that she looks overall better than when he saw her in the office on Friday. This is good news. He thinks that once the spinal headache is gone, she will continue to improve and life will get much better for her.

A Surprise Phone Call

A few minutes ago, my cell phone rang and a female voice asked me if this was the residence of Haley Chico. I said that it was, and the person on the other line said that she was Joni Eareckson Tada. This is Haley's hero of the faith. For those of you who aren't familiar with Joni (pronounced "Johnny"), she was paralyzed in a diving accident many years ago as a teenager. She has gone on to become a famous author, singer, inspirational speaker, and artist. Haley has read some of her books, and has found great strength in her writings about life and faith and perseverance. I nearly tripped running down the stairs with the phone to give it to her. When I told her who it was, she burst into tears. She told Joni that she couldn't believe she was talking to her. Joni seemed to know a lot about Haley's situation (maybe she's been reading my blog--YIKES!) Before the operation, Haley kept saying, "I wish I could speak to Joni."  Anyway, they spoke for a few minutes, and Haley put the phone on speaker. Then Joni started to sing to her. This was about the sweetest thing I have heard in a long time.

Haley has received two letters from Joni in the past several months. The first one was sort of a form letter, but the second one was more personal. She was amazed that a busy lady like Joni would take the time to write to her. She treasured those letters and wanted to get them framed. (I haven't done it yet.) This was even better. (Too bad you can't frame a phone call!) This is a picture of Joni:

I find it so interesting that this happened today. Today was a really hard day for me. I was struggling with fatigue (mostly emotional) and the feeling that things will never improve. It is immensely hard to watch your loved one suffer and you can do nothing about it. In addition, I feel as if I am constantly having to call some doctor or connect two doctors, or speak with staff at some office, or text some doctor...you get the idea. It is exhausting. I ran to the doctor's office this afternoon with a urine specimen (oh the things I do to get out--ha ha) and left Haley with our sweet neighbor, Roger for a few minutes. It was during this trip that I had a mini-meltdown. (see above)  Then after dinner, Haley's pain became really bad after she had vomited (TMI?). She began to cry and asked her dad to read her a Psalm (that's what she usually asks when she's feeling low) and to hold her hand. I retreated up to my study (Kevin's old room--who are we kidding?) to get to work on a paper for school. It was then that Joni called.

Aslan's Still Moving

Do you think that maybe God knew that we all needed a lift. I believe that God sends people to be His hands and feet. I'm sure that's what happened tonight. We saw a lot of His hands and feet today. Roger walked Lucy several times and stayed with Haley (watching Monk) while I ran an errand. Mary Lou and Elwood brought us the most yummy gluten-free dinner, Suzanne dropped off a half gallon of Kline's ice cream and gave me a therapeutic hug, Julie (my professor) assured me that she was flexible with my school work, and then Joni called. A few weeks back, I posted about how there are blessings all around us, and that if we would just open our eyes we would see them. I'm sorry to say that of late my eyes have not been very open. Yes, dear friends, Aslan is still on the move. Pray that we (I) would have the eyes to see Him.

Status Quo (With A Bit of Hope)

Dr. H Checks In

Things are still about the same. Haley is still dealing with pain and she still has that blasted spinal headache. This morning Dr. Henderson's nurse, Rebecca, called to check on Haley. She said that Dr. H had called in from his vacation and asked her if she had heard from us regarding Haley. She said that she hadn't, and he asked her to call and check on her. I told her about the last several days and how our family doctor had made several calls to the covering doctor and also to the PA, seeking advise in how to treat Haley. I asked, again, about the blood patch, and she said she would contact him and get back to me.

Infection

In the meantime, the home health nurse came to see Haley. She listened as I filled her in on the past several weeks' events. Then she wanted to look at all of Haley's incisions. When we removed the dressing on the back of her neck, we noticed what looked like infection. I immediately called both our family doctor and the Dr. Henderson's nurse. I actually took photos on my phone and was able to text them to Dr. Schubert and also to Rebecca, who would send them on to Dr. H. (Isn't technology wonderful?) Dr. Schubert immediately called a prescription for an antibiotic in to our local pharmacy. This is a bit scary to me, as she has screws and other hardware in her neck and skull, and an infection could be really bad. Please pray that this oral antibiotic works well and quickly. Our dear doctor Schubert is coming by the house tomorrow night to see it for himself!

Blood Patch

On a more positive note, Dr. Henderson sent word through Rebecca saying, "Yes, please, get a CT guided blood patch." I think this may make all the difference in Haley's spinal headache. Of course, sometimes they don't work and need to be repeated, and there is a small chance that her shunt may be interfered with if it is not done just right.

Side Note: It occurs to me that some may not know what a blood patch is. I will explain (or try to.) There is a covering over the brain and spinal cord called the Dura, which contains a liquid, the cerebral spinal fluid. This fluid serves as a sort of shock absorber for the brain and spinal cord. When there is a tear or puncture in the dura, fluid leaks out and the brain is left without that liquid protection. This is more pronounced when the person is upright, as gravity drains the fluid downward, resulting in a wicked headache. There is a space outside the dura called the epidural space, (where anesthesia is injected for having babies, etc). In a blood patch, blood is drawn from the person's arm in a pretty big vial, and then a needle is stuck in the low back into that epidural space. Then the person's own blood is put into the needle and pushed in. This is often done by anesthesiologists and is done by feel. Now, Haley is a bit more complicated because she has that shunt inside the dural space so it can drain CSF if the pressure gets too high. The other end of the shunt is sitting in her abdomen, where the fluid will be reabsorbed into her body and eliminated as urine. Because of this, Dr. H wants it done under CT guidance, which means that an interventional radiologist will put the needle in while he or she is looking at the whole thing under a CT scan. This means that they can be really sure that they are in the correct place before shooting the blood in. Hopefully that makes sense.

For now, she is still in a lot of pain. The doctors have changed around some meds, and we can get her a bit more comfortable for short periods of time, but she is grateful for any relief. Also, she is getting continuous IV fluids at home to try an encourage her body to make more CSF. She's able to eat small amounts, but still vomited at least once today, so it's slow and steady. She should be taking in as much caffeine as possible, but this has been hard. (Caffeine helps the process. Not sure how.)

Thanks to all who have prayed. Please continue to do so. We are ever so grateful!!

So Much Pain

Warning: Downer Post Ahead

Sorry I haven't updated this blog in a few days. It's hard to share when the news is not good or when there's no real news at all. Haley has continued to suffer with this stupid spinal headache. Last night I was awakened by her cries. So sad to be so helpless (her and us). We were in touch with our family doctor all weekend. All of our PCPs are wonderful and so dedicated. The one on call this weekend was able to speak with the neurosurgeon covering for the vacationing Dr. H, and a new oral med was tried. We have also resumed IV fluids at home, increasing the frequency from three times a week to every night. She really needs a blood patch, but our docs want to speak with them first. So.....we wait. And we give meds. Lots of meds. Larry has set an alarm on his phone to give meds every three hours around the clock. It's a bit complicated because they are different meds, so he has resorted to using Ziploc snack bags and writing the time on the outside so he doesn't get confused in the middle of the night.

How Much Pain Can One Person Take?

I keep asking myself, "How much pain can one person take?" and I also find myself thinking, "If this were an animal, someone would do something."  Larry and I are fried. This is so stressful watching her suffer so. And then there is the physical fatigue. I called a good friend this morning and "vented". She told me to quit being so nice. I'm not sure anyone's ever said that sentence to me! She meant that I need to make more noise and advocate for Haley. She said, "even if you have to call Dr. Henderson on his cell phone on vacation to get her some help, do it." I'm not to that point yet, but getting close. (Don't be surprised when I go all "John Q" on someone. Ha ha. If you've seen that movie, you know what I mean!) I called the hospital in Maryland and asked to speak to Bob, the PA. They asked who I was and I said, "A patient's mother" (death knell). The next thing I heard was the telltale voice mail recording. (Cue the crickets.) I left a message, but who knows how long it will be in voicemail purgatory before he gets back to me. It's hard to be patient when she's hurting so badly. ("Lord, give me patience NOW.")

I actually got to go to church yesterday and saw so many who asked about Haley and many who just wanted to give me a hug. (Presumably they didn't want to make me talk about it. So thoughtful!) Anyway, it was good to see folks again. I know that many, many, are praying, which is good. But I also wonder why nothing seems to be happening. During the sermon yesterday, it was said that God is not up there saying, "Wow, I didn't see that one coming!", that He has all things under His control for His glory. Good message, but I'm having a hard time getting it to go from my head (where I agree) to my heart (where I don't see it). So now you know how to pray for me, too. "I believe, help me in my unbelief" (Don't know the Bible reference, but it's in there somewhere!)

Other News

In other news, Haley's Angels (the volunteers who come and sit with her) are back on the job. Such a blessing. I have so much school work to do (I'm taking a graduate class this summer--dumb, I know but I have to so I can graduate on time) and have a hard time getting my mind on it. I tend to walk around the house picking things up and putting them down in other places. I believe it's called "brain fog." Anyway, I'm on vacation this week (ha ha) so I have time and with the Angels here I can hopefully get caught up on the school stuff.

Fund Raiser

I hate to talk about this, but plans are underway for a fund raiser. We found out that we will be responsible for 30% of the hospital bill, which at the present is an unknown amount. A dear friend is planning something big and fun, but will not schedule it until Haley is well enough to attend. I hope this will be a combo fund raiser and celebration of her renewed health. Also, I am in the process of getting zipper bracelets which I wanted to give away, but this same entrepreneurial friend says I should sell to help pay the hospital bill. As you may remember, the folks who have had this type of surgery refer to themselves as "zipperheads", which they swear is a term of endearment. I will have bracelets that are made of zippers that people can get and wear in honor of Haley and to remember to pray for her.  More about all of this later. Thanks again for walking this long, rocky road with us. We couldn't do it without you!

Thanks for reading my random musings. People have been saying that they enjoy the blog. Hope this one doesn't change that, but frankly, it's my therapy. Cheaper and I don't have to leave home.

Struggling

So Much Pain

We have been home for less than 48 hours and the pain is still very severe for Haley. We set an alarm to get up during the night to give her pain and nausea meds, and she seems to rest fairly well. Both mornings, however, we have let her go more than the three hours, and she can't get on top of her pain. Yesterday morning, I saw how well she was sleeping and decided not to awaken her to give it. Boy, that was a big mistake. This morning when I got up, Larry said that he had not given her her meds since 1:00 am. It was 7:30, so I quickly got them and woke her up to give them.

Back To The Hospital (At Least It Was Local)

Yesterday afternoon, she was in a really bad way, so I took her to see our family doctor, who sent her to our local hospital treatment center for IV fluids and a pain shot. You would have thought that the last place I would want to go was the hospital, but surprisingly, I took great comfort in the familiarity of our own hospital where we know most of the staff and they know her. She was quickly attended to and her pain was brought down from an "11" to a 5/10. We took her home and she rested well until this morning when it was really bad again.

I called our family doctor (actually I texted him and he called right back--I love our doctors!) and he asked how he could get in touch with one of the doctors or PAs at the Maryland hospital. I called there and found out that there is a neurosurgeon covering for Dr. Henderson and gave the operator Dr. Schubert's direct number. Hopefully that connection will be made and some guidance will be given to help get Haley more comfortable.  I know that many have been praying. Please continue. I feel as if I may explode from the stress and fatigue of this whole ordeal. Thanks in advance.

Home Sweet Home

Bad Accident

We arrived home at about 5:00 pm on July 4th after a very long trip. Traffic was moving well until a sudden downpour hit, followed by bright sunshine. Haley was encased in pillows, thanks to the handiwork of Paige, and would occasionally moan in pain :(. At the 10 mile post of I-66, the traffic came to a complete stop. Emergency vehicles came racing by in the right shoulder, and I knew it was a bad accident. People started getting out of their cars and talking to each other (I'm sure some sociologist has studied this phenomenon along with the stuck-in-the-elevator phenomenon!!), and it appeared we were there for the long haul. One guy in an orange shirt, decided (I guess) he would be the scout, and took off toward the accident. We could see the flashing lights ahead, so it wasn't that far off. Both of the girls, Haley and Paige, were asleep. Cars started bushwhacking (can a car bushwhack?) across the median to head in the other direction. Presumably they knew the area and could find another route. I thought this was a dumb idea, and I was pretty sure it was illegal, plus, knowing me, I'd get stuck in the tall grass! Anyway, we stayed put. Larry was right behind me, so all was well. Mr. Orange-Shirt came walking back and the guy in the Acura next to us asked him what he found out. (Again, strange.) Orange-Shirt stated, "it was a semi and a mini-van and there was one fatality." Acura-dude thanked him and got back in his car, and Orange-Shirt kept on walking, I suppose to share the news with the rest of us. I kept thinking about that phrase "one fatality" and thought it was such an antiseptic way to speak of the end of a human life. I tried to imagine, since it was a mini-van, if it was a child who had died and if the parents were begging the emergency workers not to take him or her away as they tried to take in the unthinkable. Or perhaps it was a parent that was killed, maybe traveling alone with several kids, and the police were faced with contacting relatives of inconsolable, confused children. Whatever the situation, I knew that I would gladly wait for however long it took to get on with our trip. We were comfortable, the AC was working well, and we had Haley's pain meds with us. No one had urgent need for a bathroom, and for some reason, we weren't hungry, even though we hadn't had a proper meal all day, just coffee and snacks. I whispered several prayers for all concerned and was thankful that we were just behind it and not in it. Even if we were closer, the hard breaking would likely have been tough on Haley. Anyway, it was good for me to realize that even though our situation was hard, there were others with much more difficult things in their path. A good reminder.

Home At Last

After one hour, traffic started moving again. When we got up to where the accident had been, we saw the semi, which looked unscathed, and the mini-van with its front bumper peeled off. It had a vanity plate, that I noticed was two names, presumably the husband and wife of the family. I again, said a silent prayer for this poor family and for the truck driver as well. The rest of the trip was uneventful, although I did drive even more cautiously the rest of the way. We arrived home to see our front door decorated with a "Welcome Home Haley" sign. Our sweet neighbor, Julie, was at it again!!

Here is a picture of Haley with pillows all around her for the trip. You can tell by her face that it was still so painful for her, even with the pillows.

And here is a picture of our front door.

Please keep praying for Haley's healing. It's been a bit discouraging for me to see how much pain she is still in. It's also a bit scary to be this far from Dr. Henderson. But I'm thankful for our wonderful family practice doctors, who I know are just a phone call away. Still, Haley needed pain meds through the night (Larry set his alarm to get up and give them to her), and even now, she just cried out to me that the pain is overwhelming. I'm the type of person who loves stories with happy endings, and in my mind, when I saw that she could walk and that her migraine was gone, I thought it would be smooth sailing from there. I need to readjust my expectations and realize that based on what others who have been through this have said, it's a long, painful convalescence. They estimate 12 weeks or more until she's functioning somewhat normally and up to a year for full recovery. It's a bit discouraging to see her back in the hospital bed in the living room and me needing to contact her "Angels" for more help. Pray for Larry and me, as we are tired and need to realize what a marathon this is. (I hate marathons!!) Thanks, friends!

 

IT'S INDEPENDENCE DAY!!!!

We're Outta Here...

We got the good news that Haley is being discharged. She met all the criteria and we snatched her out of the hospital at about 9:00 pm. Larry and Paige drove up to Maryland to help me get her out. We had a pile of stuff that had accumulated over our 8-day stay, so there were many bags, flowers and balloons to carry to the car.

Holla Day Inn Slumber Party

We got to the Holiday Inn and we got Haley relatively (not really) comfortable. We used the trick that we had learned from Bob the PA and put folded towels under the mattress to elevate it a bit. We gave her pain meds and prayed she would get some decent rest. She woke up at the exact time she was due her next dose, so sweet Paige, her bedmate, gave it to her and she fell back to sleep. When I woke up, Larry was already awake, sitting in a chair (he had brought Paige and me coffee, love that man!) and I noticed that it was 2.5 hours past her next dose. She woke up a few minutes later, and, as predicted, her pain was off the chart. Paige (the should-be nurse), gave her another dose and we waited for it to kick in.

The hotel's internet was down, so we ran to the local Starbucks so I could update this blog. We are planning to go buy a bunch of bed pillows so we can encase her in fluffiness for the trip home. If you are reading this anytime on Thursday early in the day, please pray for our trip home. It is 2.5 hours and she had a tough time tolerating the 1 mile trip home from the hospital. The speed bumps were especially painful.

We anticipate the need for much more help when she gets home. Our sweet neighbor, Julie has already washed the sheets and remade the hospital bed in the living room. This will be a long, difficult recovery, but we must keep in mind that there is great hope for Haley. The surgery was a success and she will be able to resume her normal life and pursue her dreams. With the Ehlers-Danlos Syndrome, though, she will likely have other challenges, but we will take things one step at a time. I plan to continue this blog, as we are so desperately in need of continued prayer and support.

Here is a picture of Haley getting in the van last night.

Thanks, friends. I will update later today after we are home.

Turnaround

Progress

Today things were looking really bleak. I felt like we were in a sailboat without any wind, just floating in the ocean.  I woke up early to shower and meet Dr. Henderson at the hospital. I had spoken with him by phone last night and he said he would be at the hospital at 7:00 am. I said, "I will meet you then." I must have misunderstood him because he didn't come. I finally texted him, at the nurse's urging, and basically said, "I'm here, where are you?" (Not in those words, though, haha)

Finally at 11:00 he came in. He poked his head in the door and asked if it was OK if he brought someone in to see Haley. Of course we agreed, and in walked this young lady named Carissa. He said that she had had similar surgery as Haley, but she had had a really tough time. He told Haley, "Compared to her, you are a rock star!" I asked her how long she was in the hospital, and she said "32 days." Wow!! All of a sudden things didn't seem so gloomy for us. She only told part of her story because Dr. H was late for clinic. He told us we could talk with her more later. He stood Haley up out of bed and decided that her head was too far forward, which is adding to her pain. Here he is teaching her how to stand up straight.

Then he took her for a walk down the hall. I love the pictures of the two of them together. He really is a kind doctor who connects well with his patients. He sort of sees these young people as if they are is own kids, it seems. I thought these two pictures were especially sweet. Haley said that while they walked, she was telling him that she hadn't walked since May 22nd. He had forgotten that and seemed surprised. I think he was extra pleased at how well she was walking then.

 

 

This one is from a distance, but I think it shows a tenderness between doctor and patient. He really is something the way he can get these post-op patients up and moving.

 



Finally, on the way back to her room, Haley flashed her signature thumbs up sign. She really is such a trooper. Love that girl!!

Discharge?

So they are starting to talk about what needs to happen for Haley to be discharged. She has to be eating and drinking and her plumbing has to be working. So far all is good with these. Then her pain needs to be controlled by oral pain meds. This is being tested as we speak. They gave her a pill a while ago, so if it works, we may be ready to declare our independence soon.

I called Larry and told him that I wanted him to come back up here and help me get her home. Paige, our oldest daughter, had volunteered to come, so it was decided that they would come up this evening and spend the night with me in the hotel. If Haley is let out tonight, we will take her back to the hotel and Paige and I will help her get a proper bath--the first one she will have had since May 19th (not counting the outdoor Bathsheeba-style deck-bath behind the towels!!) If she's not up to it, we will just wash her up. We will also do a dry shampoo for her. Dr. H. says no water yet on the incision at the back of her head. Speaking of that, apparently they call folks who have had this type of surgery "zipperheads" because their scar looks like a zipper up the back of their heads! Two of the other patients, Sarah and Dianne, tracked down these zipper bracelets and Sarah came by last night before leaving town for Canada, and gave one to Haley.  Here is a picture of the bracelet:

I think that's really a cute idea. Maybe when I get back home, I will have to find some more to give to all of Haley's Angels who have helped us so much through this amazing and difficult journey. I will post again soon!!!

Spinal Headache

Holding Pattern

Haley is in a holding pattern. She has been so, so ill. It was determined that she has a spinal headache. This is when there is a puncture in the lining of the spinal canal/brain. It can happen after a person has a spinal anesthetic or, less commonly, after a spinal tap. The usual treatment is for them to draw a vial of the patient's blood and inject it into the spinal space, where it clots and closes the leak. We know that Haley had a tear in her dura during the surgery on Wednesday. It happens pretty frequently. She had the shunt placed on Friday night because Dr. H. said that her pressure was high in her spinal fluid and that it caused the tear that he had repaired to "spring a leak". (My words, not his.) I spoke with the PA, Bob, this morning and asked about getting her a blood patch. He spoke with Dr. Henderson, and came back and told us that it was not possible because it could clot off the shunt. So she has to ride it out, which is usually two days flat in bed with a lot of IV fluids and as much caffeine as the person can tolerate. (Not sure what the caffeine does, something with vascular constriction, I think.) Anyway, we asked about IV caffeine (yes, it does exist, don't tell Larry or he will want some!) and we were told that the manufacturer stopped making it. Boo.

So, she has to lay flat or the headache is really bad. When she gets up to use the bathroom, her headache pain goes to a 15!!! Poor Haley. She is so brave and has fought so hard. She has also had some nausea and vomiting, but that is a bit better.

10,000 Reasons 

As I type this she is listening to the song, "10,000 Reasons." For anyone who goes to our church, you know that Haley sang this as a solo at the end of January when she was so sick she had to be helped on and off the stage. It was beautiful and for me and many others it will always be "Haley's song".  In fact, one lady emailed me a few days ago to say that when she heard Haley sing it, she had a sense that things were going to get better for her. She didn't know how or when, but she just knew that God was going to do something great in and through Haley. She told me she wants Haley to sing it again for the church when she's well enough. I think that's a good idea. I always cry when I hear it, but that's pretty much par for the course these days.

Here is a picture of her listening to that song.

 

For those of you who are unfamiliar with the song, some of the lyrics are:

 

Bless the Lord, Oh my soul, Oh my soul. Worship His holy name.

Sing like never before, Oh my soul, I'll worship your holy name.

 

The sun comes up, it's a new day dawning. It's time to sing your song again.

Whatever may pass and whatever lies before me, let me be singing when the evening comes.

 

You're rich in love and you're slow to anger. Your name is great and your heart is kind.

For all your goodness I will keep on singing, ten thousand reasons for my heart to find.

 

How sweet to see her in this condition and wanting to hear this song over and over. How wonderful to know that we can always sing in our hearts even when the days are dark, like these have been.

 

Many have asked when she will be discharged. The answer is, I don't know. They said it's usually two days flat before the thing seals itself up. She said that if she felt like she does when she's flat, she could go home, but the headache is really severe when she gets up at all. Plus, I am probably traveling alone with her for the 2.5 hour ride home, which is a bit daunting. If she's not in good shape, it will be really hard to get her home.

 

Larry left to go back home to tend to his painting business, and a friend, Kathleen, came to stay with me, but she has to leave tomorrow morning (Wednesday) so I will be by myself. It's a bit scary, but I can do it.(I think. Anyone up for a road trip, I hear Maryland is lovely this time of year, ha ha!)

 

Please pray for quick healing of this leak and subsequent spinal headache. Also for perseverance for Haley (and me, too). Pray that there will be no more vomiting (she had some a while ago this afternoon.) Pray for her to be strengthened inside and outside (she's really physically weak and I wouldn't let them get her up today because of the spinal headache.)

 

Thanks to all who have followed and prayed and helped in other ways. I have no idea who is following, and this blog will not let folks leave comments, so I don't get many (any). Feel free to send me a face book message or email me at chicofam7@msn.com if you have something you would like to say. Thanks.https://www.facebook.com/amy.a.chico