Surgery Went Well: An Update

Today was a long day! We woke up at 4:00 am and left home at 5:15. It was rainy and dark and there were a ton of tractor trailers on the highway, which spit mist up on our windshield. Haley was nervous and kept praying that we would be safe. It took us three hours to get to the hospital, but we made it safely.

Haley was gotten ready for surgery and taken to radiology for PICC line placement. We saw several nurses and other staff members who remembered us. It's weird that we have been here so often that they remember us! Her surgery was supposed to be at 11:00 but it was soon obvious that it would be delayed. Being a preop nurse, I understand that that's just the nature of surgery. You never really know how long an operation will take. So it's good to be patient. (Maybe that's why we call them "patients"??  ha ha)  Anyway, I digress.  Finally Dr. H came in to see her. He looked at her back and poked around a little, saying where he would put the incision. He said a prayer with Haley, and she tagged her own addendum onto his prayer, thanking God for Dr. H and asking Him to guide Dr. H's hand. I think he is truly touched by Haley's prayers. Then the anesthesiologist came in and looked through her chart, asking her questions. At last, Dan, the nurse anesthetist came in. He has always taken care of Haley, and he does a wonderful job. She never throws up after surgery when Dan is on the case. Haley looked at him and said, "Give me the usual, Dan."  He cracked up.  Haley then said, "I hear Carol out there" and sure enough, the OR nurse, Carol, came in. Needless to say, we felt comfortable with the folks taking care of her.

Her surgery took over 3.5 hours. But I was delighted to see a friend from years ago, Lisa, come into the preop area. It was nice to have her with me, and we dashed out to the hotel so I could check in and unload my luggage. We chatted and caught up, and then she had to leave. (She lives in the area and was so sweet to come and see us.) When I got back to the hospital waiting room, there sat Ally, one of Haley's dearest and best friends. She, too, lives somewhat nearby, and also took the time to come and be with me and to see Haley after surgery. That is some of the best medicine for Haley!

A little while later, I saw a wet (still raining) Gary coming toward us in the waiting room. He is the sweet friend of our family from our church, and a dear, faithful friend to Haley through years and years of illness. I gave him a hug and asked what he was doing there. He said that he was in the area for work so he thought he would stop by. (I saw through that--he owns the company, so he can go and check on whatever work is being done whenever and wherever he wants!)  Anyway, what a treat to have two of Haley's favorite people to wait with me.

Dr. H came out of the OR at 5:00 pm and said that the surgery went well. He untethered her cord, and it retracted up, meaning that it was truly tethered. This is a good sign. Then, he fixed the darned shunt, and he said that the rubber on the valve had disintegrated. He has never seen this before, except for the last time he saw it in Haley! What the heck? I asked him later if he thought the valves were defective. He said that that was a good question, and that he isn't sure, but that he definitely thinks that the way they are made is a poor design. Anyway, he fixed the thing and sewed the tissue in her back that had formed into a pocket so that it would heal well.

Haley was in recovery for 3 hours. We got to see her for short periods, as they were trying to control her pain. She said that her headache was much, much better, but that her back was really sore. They finally moved her to a room at around 8 pm. We were allowed to see her for a while in her room. At one point, Gary had her smiling and I snapped a picture.

Gary and Ally left shortly after this, as they both had long trips to their respective homes. I stayed for a bit longer, and stepped out to get Haley a drink from the vending machine. When I got back, I saw Dr. H sitting in the chair holding her hand and talking to her. 

He was so kind and said that Haley is so smart and so strong. He said that he thinks she is going to get over this hurdle and do great things in this world. He is really quite compassionate. He genuinely feels badly for all that Haley has had to endure. I could not believe that he was still at the hospital. His first case was at 7:30 this morning and he had just finished in the OR. What kind of dedication is this? It really blessed me (and Haley.)

So thank you for your prayers. God heard and answered: I was not alone, I'm safely tucked in at the hotel and am fine, and most importantly, God brought Haley through yet another surgery. I don't take one minute of this for granted. Would you please pray for her recovery? She has to lie flat on her back for three days, which will be hard for her. She doesn't ever watch TV, only YouTube videos of Broadway singers, so it may be kind of boring for her. Pray that she can endure the pain and the boredom and that I will be helpful to her. Thanks so much. We are in awe of the support you have shown. And we are humbled. 

Surgery, Here We Come...!

Well, we are two days away from Haley's surgery. I wish I could say that she is excited and feeling strong, but both would be lies. She has continued to feel poorly since her meningitis, and is really pretty weak. Her incision is still puffier than ever, so I called Dr. H's office on Monday to let them know. I was a bit pushy (hard to believe, I know!), but I told them that I really felt he should see it. They reluctantly made an appointment for Wednesday at 5:00 pm, the end of his day.

I went to practicum in the morning, and left at noon to pick Haley up. We left at around 1 and got to Dr. H's at 4 pm . I figured, an hour is not that long to wait. Haley was feeling really poorly and immediately found a place on the floor, used my coat as a pillow, and covered up with the purple fuzzy blanket she'd brought from home. I played solitaire on my phone and tried not to eavesdrop on the conversation that two other women in the room were having. Eventually, they asked me about Haley, and after speaking with them for a while, I realized that the people who suffer from EDS have many of the same difficulties. Both of these ladies were older than Haley, both were moms, and both had had several surgeries with Dr. H. They felt so bad for Haley having to endure all of this at such a young age. I couldn't disagree with them. Here she is asleep on the floor of the waiting room:

After they were both called back to see the doctor, it was finally Haley's turn. It was shortly after 7 pm and I was both tired and hungry. Haley was tired and in pain, but hasn't been very hungry lately. Dr. H took one look at the incision and said, "Oh dear," in a way that made me realize that my pushiness was warranted. He told us that the shunt is leaking from around the tubing. most likely, and that he could either fix it the next day in the outpatient surgical center or do it when he untethers her cord on the 14th. He gave her the choice, but the next moment he made the decision for her--he would rather do it all at once on the 14th.

We left at 8 pm and stopped to get Haley a bowl of soup (she was finally hungry). We drove home, contemplating the next 5 days and thinking about the surgery. This was a long day, but well worth it. I had told Dr. H that I was happy to drive 5 hours (2.5 each way) for a 5 minute appointment. I think he thought I was being sarcastic, but I meant it. He knows so much about this condition, and we trust him implicitly. (He did spend a lot more than 5 minutes with her, which was nice!)

Larry and I made the decision for me to go with Haley on the 14th alone. His school has graciously allowed him to accompany me for all of Haley's medical appointments, but it causes some difficulty for his students. Even though there is a substitute teacher, they are often confused and in need of more instruction. For this reason, I will go and he will stay.

So the plan is to leave on Tuesday early in the morning to arrive at the hospital at 9:30. She will have a PICC line placed and then will be gotten ready for surgery. It is scheduled for 1:00 pm. I don't know how long she will be in the OR, but I suspect several hours. Obviously, we covet your prayers for a successful surgery. A friend prayed with me this morning and prayed that it would be "his best day." I liked that. Also, I don't like waiting while she's in surgery and usually squirm, read, play solitaire and talk to Larry. It will be difficult to be alone. Please pray that the time passes quickly for me. And I will be staying in a hotel, which is not my favorite thing to do alone. I would appreciate prayers for safety and good sleep. Can you tell I'm anxious?? I think she will be in the hospital for several days.

Finally, I have something a bit awkward to address. Several folks have noticed and made use of the "Donate" button on this site. Up until now we have been able to manage most of the expenses this round, thanks to some money that I was left after my mom died. With me working only 2 days a month (due to finishing school), I have had teeny tiny paychecks. The funds that have been donated are such a blessing. They go into a separate account and will be used for her medical expenses alone. I have not ever mentioned that button, and it was put there, I guess, by the person who set up this blog for me. (She, too, is a Dr. H patient, and has been through as much or more than Haley, so she knew that resources would be an issue.) Anyway, we are grateful for the donations. I am so behind in writing thank you notes, that I don't know if I will ever catch up. Our personal belief is that God will provide for all of our needs, and He has done that over and over through the years. Our own beloved church has helped us in so many ways, including financially, and we are grateful. Thank you for your prayers, your gifts, your meals, and your love for us.

When Will Things Get Better??

When will things get better? That seems to be the question of the day. Every day. Haley is still recovering from viral meningitis/encephalitis. She feels rotten and has pain in her head, neck and back. Several days ago, she noticed that the incision in her back was swollen. It has increased in size and has become more painful in the past several days. She cannot lie on her back or her stomach because of the pain. She wants someone to stick a needle in it and drain it, but that would be dangerous if there is spinal fluid behind it (which is very likely.)

She is also experiencing fevers everyday. They go up to almost 103 at night. The doctors think this is from the meningitis. And...her kidney function is still not normal (probably from the meds she got in the hospital for her meningitis.)

Today we went to our family doctor to have a blood test to see if her kidney function is better. The results aren't back yet, so we don't know. Our doctor called Dr. Henderson, who thinks that there is a leak somewhere in the shunt. He wants to postpone her tethered cord surgery for at least a week due to the fevers. He said that he will do a blood patch when he does the surgery to hopefully plug the leak.

Of course, Haley is disappointed. She is sick of feeling sick and being in pain. She can't stand this huge bulge in her back and says it feels like it might explode. We are really at the end of our collective ropes. I told our family doctor that I would be happy to drive her up to Maryland to let Dr. Henderson see her in the clinic so he can see it for himself and get a good idea about what is going on. We will know tomorrow if Dr. H thinks that's a good idea. (I think my car can find its way up there without me driving it!)

For those who are brave of heart, here is a picture of her incision. It is on her lower back and it is really sore.

At the risk of sounding like a broken record (if you're under 35, ask your parents what that means), we covet your prayers. We are all feeling disheartened, especially Haley. Thanks, as always.

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.