We are sitting in our room in the Marriott Marquis hotel in New York having just come from seeing Les Miserables. This is Haley's absolute favorite Broadway musical. The starring role was played by her favorite singer, Ramin Karimloo. In February, I wrote him a letter explaining that Haley was really sick and that she played his music over and over and that it brought her great comfort. He responded with an autographed photo, which thrilled her.
She actually bought the tickets for herself and I as a graduation gift for me. She wanted so badly to meet Ramin. My sister knows someone in the show and contacted her to see if she could arrange for Ramin to meet Haley. As we were standing at the stage door, I read an email that my sister had forwarded to me from the lady apologizing and saying that she had to dash out right after the show to go to an audition. Haley was disappointed but we waited anyway.
Eventually, the door opened and there he was. I called out his name (much to Haley's horror) and he came over to her. He spoke with her for a few minutes as she explained how much his singing had meant to her these many months. He looked directly at her and thanked her for her kind words. He asked about her surgeries and said that he would pray for her!! What a thrill for Haley and what a classy man Mr. Karimloo is! Haley just said to me, "I can die now!"
As a mom it has been so hard to watch Haley miss out on so many things in her life. What a blessing to see her have a dream fulfilled. I must say that I was not entirely looking forward to this trip, as I wasn't sure how we were going to get her around in a wheelchair. We usually stay with family in New Jersey and take a train in to NYC but that was not going to be easy in her present condition. Then last week we got a call from some very generous relatives who offered to put us up in a hotel that is literally yards from the theater. What a blessing. And then for her to have a few moments with this singer and for him to autograph her program was just wonderful. We have been counting the blessings that come her way this whole trip. In fact, Haley keeps jokingly saying "hashtag blessed" to me whenever we spot one, and there have been many. She has not waited in any lines. They waved her up to the head of the bathroom line in front of 25 people during intermission (hashtag wheelchair perks?). I asked folks to pray that she wouldn't faint during the show and she didn't! (Except for once after her bathroom break). Blessings are all around us and they point is to the God of all blessings. We are headed to Carmine's for dinner with some of our family from New Jersey (another yummy blessing!) I will post pictures later when I am not on my phone. We are so grateful for you all!! Today is such a good day!!
Wednesday, August 12, 2015
Sunday, August 2, 2015
Good-bye Pain Meds, Hello Seizures
I have been meaning to post an update for some time, but haven't done so until now. Haley has been on pain meds for a long, long time due to her chronic illness and the pain that goes with it. She has wanted to get off of them and has worked very hard at weaning down at different times. She nearly got off of them last fall (which one doctor told her was a huge feat that few people were able to accomplish), when she began fainting again, so the doctor told her to stop the weaning. The thought was that her body was not handling the change, even though it was gradual.
Anyway, a few months ago she got it in her head that she was going off the pain meds no matter what. She took herself down pretty quickly. (She's quite determined!) One night at the beginning of July, when she was nearly off of the meds, she fainted on the kitchen floor. When she woke up, she said that her muscles weren't working. I could see that they were quivering. I tried to reassure her and to help her to a sitting position, but it was like she couldn't hold herself up. I called the doctor, and he told me to give her some of her pain meds. (It had been a long time since her last dose.) I hung up the phone and turned to see her having a seizure. She had never had one before. I called the doctor back and he said to call 911. She was taken to the hospital and was admitted. Apparently her body was rebelling against the lack of pain meds.
She stayed in the hospital for a few days and was really ill with a lot of GI issues that go along with stopping narcotics. We are all so proud of her, as it was not an easy thing to do. After she got out of the hospital, she was scheduled for an EEG, which measures brain activity. During the test, she passed out several times. The report showed that there was some seizure activity in her brain during these times.
She has continued to faint multiple times a day and has had seizures daily, although they are seeming to lessen. Dr. Henderson was contacted and recommended a medication. She was put on that, and it seems to have decreased the seizures. In fact, yesterday was the first day that she has not had any seizures!! Dr. Henderson suspects that she has instability in the bones in her neck, and that is likely the cause for the fainting. We hope that he will see her soon.
About a week ago, she began having abdominal pain. It got worse and last Sunday, and when she was doubled over, I realized that she had a problem with her stomach. I dug around in the medicine cabinet and found a medicine that she had been on a while back that is to coat the stomach. I gave her some and it worked like a charm. On Monday we notified her doctor, and he wanted to see her and get some lab work. (It seemed that she had developed some irritation or maybe even an ulcer from the Ibuprofen and Naproxen she was taking for her head and neck pain since stopping the narcotics.) She dealt with this pain all week, ending up in the ER twice. The cycle of vomiting, dehydration, and pain was ongoing. The ER trips provided her with IV fluids and nausea medicine, along with a strong acid-reducing med that helped tremendously. The ER physician, who was somewhat familiar with her case (most of the docs there have treated her at one time or another), told her that he was so proud of her. He said that it was a great thing that she had done and that it might take months for her body to adapt to being off of the narcotics. He was really kind to her and you could tell that he respected her for her strength and determination.
So even though she has made great progress in this one area, she is still very "fainty". In fact, she has been told by several doctors that she is not allowed to go upstairs at all. This is because she had a faint/fall-down-the-stairs episode a few weeks ago. As you can imagine this is really discouraging to her. She now resides on the couch in the living room and has to be escorted to the bathroom. We aren't sure why this has happened or how long it will last, but we covet your prayers for her. It's really hard to live day-by-day, trusting that God has control of everything. With most illnesses, there is a predictable pattern; you get sick then you get better. Not so with this stupid illness. She can be walking around and doing relatively well and the BAM, back to fainting.
I am really grateful for her friends who have rallied around her. The other day, she was having severe belly pain, and in a flash, a group of friends were at the house praying for her, reading Scripture passages and comforting her in any way possible. One of them even accompanied us to the ER.
I have a specific prayer request, and it may seem silly, but here goes: Haley got tickets for the two of us to see a Broadway musical (Les Mis) as a graduation present for me. It is starring one of her favorite singers and they are front-row seats. The performance is Wednesday, the 12th and we are supposed to drive up and stay a couple of nights. It looks like she will be in a wheelchair, which makes things more complicated, but she really wants to go, plus these were very expensive tickets. Would you pray that she will be able to make the trip and that for just a few hours she will forget her physical struggles? She even wants to go to the stage door and meet this gentleman and hopefully get his autograph or shake his hand. Thankfully, Larry will be taking us, or I wouldn't be able to manage the trip by myself.
Thank you all so much for your care and concern. We are often holding on by a thread and knowing so many care is really a wonderful thing.
Anyway, a few months ago she got it in her head that she was going off the pain meds no matter what. She took herself down pretty quickly. (She's quite determined!) One night at the beginning of July, when she was nearly off of the meds, she fainted on the kitchen floor. When she woke up, she said that her muscles weren't working. I could see that they were quivering. I tried to reassure her and to help her to a sitting position, but it was like she couldn't hold herself up. I called the doctor, and he told me to give her some of her pain meds. (It had been a long time since her last dose.) I hung up the phone and turned to see her having a seizure. She had never had one before. I called the doctor back and he said to call 911. She was taken to the hospital and was admitted. Apparently her body was rebelling against the lack of pain meds.
She stayed in the hospital for a few days and was really ill with a lot of GI issues that go along with stopping narcotics. We are all so proud of her, as it was not an easy thing to do. After she got out of the hospital, she was scheduled for an EEG, which measures brain activity. During the test, she passed out several times. The report showed that there was some seizure activity in her brain during these times.
She has continued to faint multiple times a day and has had seizures daily, although they are seeming to lessen. Dr. Henderson was contacted and recommended a medication. She was put on that, and it seems to have decreased the seizures. In fact, yesterday was the first day that she has not had any seizures!! Dr. Henderson suspects that she has instability in the bones in her neck, and that is likely the cause for the fainting. We hope that he will see her soon.
About a week ago, she began having abdominal pain. It got worse and last Sunday, and when she was doubled over, I realized that she had a problem with her stomach. I dug around in the medicine cabinet and found a medicine that she had been on a while back that is to coat the stomach. I gave her some and it worked like a charm. On Monday we notified her doctor, and he wanted to see her and get some lab work. (It seemed that she had developed some irritation or maybe even an ulcer from the Ibuprofen and Naproxen she was taking for her head and neck pain since stopping the narcotics.) She dealt with this pain all week, ending up in the ER twice. The cycle of vomiting, dehydration, and pain was ongoing. The ER trips provided her with IV fluids and nausea medicine, along with a strong acid-reducing med that helped tremendously. The ER physician, who was somewhat familiar with her case (most of the docs there have treated her at one time or another), told her that he was so proud of her. He said that it was a great thing that she had done and that it might take months for her body to adapt to being off of the narcotics. He was really kind to her and you could tell that he respected her for her strength and determination.
So even though she has made great progress in this one area, she is still very "fainty". In fact, she has been told by several doctors that she is not allowed to go upstairs at all. This is because she had a faint/fall-down-the-stairs episode a few weeks ago. As you can imagine this is really discouraging to her. She now resides on the couch in the living room and has to be escorted to the bathroom. We aren't sure why this has happened or how long it will last, but we covet your prayers for her. It's really hard to live day-by-day, trusting that God has control of everything. With most illnesses, there is a predictable pattern; you get sick then you get better. Not so with this stupid illness. She can be walking around and doing relatively well and the BAM, back to fainting.
I am really grateful for her friends who have rallied around her. The other day, she was having severe belly pain, and in a flash, a group of friends were at the house praying for her, reading Scripture passages and comforting her in any way possible. One of them even accompanied us to the ER.
I have a specific prayer request, and it may seem silly, but here goes: Haley got tickets for the two of us to see a Broadway musical (Les Mis) as a graduation present for me. It is starring one of her favorite singers and they are front-row seats. The performance is Wednesday, the 12th and we are supposed to drive up and stay a couple of nights. It looks like she will be in a wheelchair, which makes things more complicated, but she really wants to go, plus these were very expensive tickets. Would you pray that she will be able to make the trip and that for just a few hours she will forget her physical struggles? She even wants to go to the stage door and meet this gentleman and hopefully get his autograph or shake his hand. Thankfully, Larry will be taking us, or I wouldn't be able to manage the trip by myself.
Thank you all so much for your care and concern. We are often holding on by a thread and knowing so many care is really a wonderful thing.
Saturday, April 25, 2015
A Stunned Dr. H
Yesterday we traveled to Maryland for Haley's post op appointment. As usual, the trip was long and the beltway a mess (what did I expect on a Friday afternoon?). Our dear friend, Kendra, came along to keep us company. Haley looked great. She had had a haircut and some highlights a few days earlier, so she was all spiffed up. Also, she had make-up on and a cute long skirt.
Anyway, we walked in to his office, and were met by his NP, Jean. Her mouth gaped open and she said, "Haley, is that you?" She's kind of new to his practice, so she's only ever seen Haley really sick. She gave her a big hug and told her how great she looked.
Soon we were called in to a room to wait for Dr. H. When he finally came in, he had the most shocked look on his face. He looked like he wasn't sure who he was actually seeing. Then he broke out in a big grin. Over and over he told Haley how great she looked. Then he asked her about her symptoms, and she answered each question by telling him that everything was better. "Headaches?" "Better." "Leg pain?" "Better." "Back pain?" "Only incisional." Again, he looked stunned. He said that he wished that the nurses at the hospital could see her now. He even suggested that some day when we are in the area that we stop by and walk down the hall of one of the floors to let them see her!
The night before the appointment, we had decided to make him a cheesecake. A baker, I'm not, so we called Kevin's wife, Hailee, who is a fabulous baker. She offered to come over to our house to help us. Needless to say, we were grateful, as it had been a long day at work for her and we really did not know what we were doing. We whipped up an Irish Cream cheesecake with Dark Chocolate Ganache. It turned out perfectly!! I packed it on ice for the trip and we presented it to Dr. H. He was floored and very grateful. I warned him not to drive after eating a piece of it! (Ha Ha)
Here it is. Believe me, it looked (and smelled) even better in person!
Also, Haley had written a very heartfelt thank you card, which she gave him along with two books that she picked out especially for him. Both books have been a tremendous support and comfort to her during the years of illness. One is called, "The Red Sea Rules" and the other is the autobiography of Joni Earickson Tada, who was paralyzed as a teenager. She told him that she hopes they will inspire him as well.
It's kind of strange to say goodbye to Dr. H. I told him that we are so thankful for the way he uses his gifts to help people with EDS. As I am due to graduate in less than two weeks, I can only imagine how rewarding it must be to help sick people as he has. Of course, I will probably never help anyone to the magnitude that he has. but, still, I can imagine. He gave us big hugs, and we all posed for a picture. We all thought that his eyes were a little misty. Here he is with Haley.
Anyway, we walked in to his office, and were met by his NP, Jean. Her mouth gaped open and she said, "Haley, is that you?" She's kind of new to his practice, so she's only ever seen Haley really sick. She gave her a big hug and told her how great she looked.
Soon we were called in to a room to wait for Dr. H. When he finally came in, he had the most shocked look on his face. He looked like he wasn't sure who he was actually seeing. Then he broke out in a big grin. Over and over he told Haley how great she looked. Then he asked her about her symptoms, and she answered each question by telling him that everything was better. "Headaches?" "Better." "Leg pain?" "Better." "Back pain?" "Only incisional." Again, he looked stunned. He said that he wished that the nurses at the hospital could see her now. He even suggested that some day when we are in the area that we stop by and walk down the hall of one of the floors to let them see her!
The night before the appointment, we had decided to make him a cheesecake. A baker, I'm not, so we called Kevin's wife, Hailee, who is a fabulous baker. She offered to come over to our house to help us. Needless to say, we were grateful, as it had been a long day at work for her and we really did not know what we were doing. We whipped up an Irish Cream cheesecake with Dark Chocolate Ganache. It turned out perfectly!! I packed it on ice for the trip and we presented it to Dr. H. He was floored and very grateful. I warned him not to drive after eating a piece of it! (Ha Ha)
Here it is. Believe me, it looked (and smelled) even better in person!
Also, Haley had written a very heartfelt thank you card, which she gave him along with two books that she picked out especially for him. Both books have been a tremendous support and comfort to her during the years of illness. One is called, "The Red Sea Rules" and the other is the autobiography of Joni Earickson Tada, who was paralyzed as a teenager. She told him that she hopes they will inspire him as well.
It's kind of strange to say goodbye to Dr. H. I told him that we are so thankful for the way he uses his gifts to help people with EDS. As I am due to graduate in less than two weeks, I can only imagine how rewarding it must be to help sick people as he has. Of course, I will probably never help anyone to the magnitude that he has. but, still, I can imagine. He gave us big hugs, and we all posed for a picture. We all thought that his eyes were a little misty. Here he is with Haley.
Doesn't she look great? Of course, she still struggles with having very little endurance, and needs to rest a lot. If she gets too tired, she shakes and has a lot of pain (darn it!). He also thought that she should take an antibiotic for her incisions, which are a little angry. Our prayer is that she will continue to improve. Our family has been through quite an ordeal for a very long time, but God has always been walking with us through it. That cannot be denied.
As we were leaving, he gave me one last hug and said, "Thanks for being such a great mother." That made me smile!! I hope that after he was done seeing patients, he had a cup of tea (I just imagine that he is a tea drinker) and a big piece of cheesecake, read Haley's card, and said a prayer of gratitude for the lives he has touched and changed. I may write him a long letter explaining how he has been used in Haley's life.
Friday, April 17, 2015
Oh Happy Day!!!
The last 24 hours have been amazing. Yesterday at around 2 pm, Haley was so bad that I actually texted Larry and told him that I needed him to come, that I couldn't do this alone. He called me a few hours later and by then things had calmed down, so it was decided that he would wait until this evening to come. (He was really trying not to miss work!)
Then I heard from my oldest daughter, Paige, who was taking one last mini-vacation with her husband and their 7 year old before their new baby comes in a couple of weeks. They were heading to the Washington, DC area and to the Baltimore Aquarium. I asked her what town they were staying in last night, and she said, "Greenbelt." That's exactly where I am! I asked her what hotel they were going to, and she said the Marriott Courtyard. That's right next to my hotel! So last evening, I popped over to the pool at their hotel and surprised Reagan. It was so nice to see them, and I asked Reagan if she wanted to spend the night with me in my hotel room. She said yes, so I had company for the night.
She was discharged from the hospital at around 12:30, but Dr. H wanted us to stay in town one night in case anything goes wrong and we need him. We dropped our stuff off at the hotel and Haley asked if we could go to Target to get a few things. She said she would be okay if she could ride the motorized cart. Here she is:
She picked out some spring clothes and a new purse (she's addicted to purses) and a book and some nail polish. She was so happy to be doing "normal things." At one point, I told her to hold a shirt up against her to see if it was the right size. She held it with her chin and her eyes got wide. She said, "Mom, I don't feel pain down my back when I pull my chin down to my chest. This is the first time in my life that I don't have pain when I do that!" Also, she remarked that her legs don't hurt anymore. She said that for as long as she can remember, her legs have hurt her. She has always called them "leg migraines" and they are so painful. She said to me this afternoon, "You mean I won't have leg migraines anymore?" We are rejoicing at the results of this surgery. After target, we returned to the hotel where she put her loot on the bed. Here she is:
Then I heard from my oldest daughter, Paige, who was taking one last mini-vacation with her husband and their 7 year old before their new baby comes in a couple of weeks. They were heading to the Washington, DC area and to the Baltimore Aquarium. I asked her what town they were staying in last night, and she said, "Greenbelt." That's exactly where I am! I asked her what hotel they were going to, and she said the Marriott Courtyard. That's right next to my hotel! So last evening, I popped over to the pool at their hotel and surprised Reagan. It was so nice to see them, and I asked Reagan if she wanted to spend the night with me in my hotel room. She said yes, so I had company for the night.
Then in the morning, we all met in the parking lot and went to the hospital to surprise "Aunt Haley". Reagan brought her some pink tulips. When we got there Haley was sitting in a chair!!! She looked so good. She was stunned to see Paige and Peter, and especially Reagan. Reags through her arms around Haley's neck and hugged her tight. It's really the best medicine. You have to understand that in Reagan's world, there is no one as wonderful as her Aunt Haley. She prays for her fervently, and loves her so much. It's really quite something. I wish I had a picture of that moment. But here are Paige, Peter and Reagan before we left for the hospital.
Dr. Henderson had already been in to see Haley when we had gotten there, and apparently he absolutely gushed over how proud he is of her. When he got her up to walk her, she went 100 yards. He couldn't believe that she pushed herself after 4 days flat on her back. He insisted on taking a photo of her with his own phone and texted it to Haley. I was sorry that we missed seeing him. I know that Dr. H is fond of all of his patients, but I believe that he has a special bond with Haley. After all she's been through, she still fights. And he says that she is very bright and very tough. He's right. When he saw that we were in her room, he came back in to brag on her to me. Haley introduced her sister, brother-in-law and niece to him. He was quite taken with Reagan (and loved her name!) We snapped a picture of the two of them.
Here's the picture Dr. H took of Haley walking in the hall with the PT and dear Sudha the nurse (hiding her face).
I love seeing her so happy. She must've thanked me ten times for taking her to Target. She said she feels normal, and that's so nice.
I know that EDS is a lifelong disease and that there's no cure for it, so I don't usually get too optimistic, but I have such a feeling that Haley has good things in her future. Maybe it's because Dr. H keeps telling me that she's going to change the world. Anyway, my heart is full of gratitude...to God, and to you, our friends and family who have loved us so well. And I'm really thankful for Dr. Fraser Henderson.
As I was sitting in the van in front of the hospital waiting for them to wheel Haley out, I saw Dr. H coming out the front door. He walked around to the driver's window, and I rolled it down. He said, "Take care of yourself. You know see's really a remarkable girl." I smiled at him and said, "You know, you're pretty remarkable yourself." He smiled and walked away. I said, "See you next week" (her post-op appointment is next Friday). I sat there feeling so thankful that God had brought that man into our lives. He has truly changed the course of Haley's life. And he knows where his skill comes from. And he, too, is thankful.
Thursday, April 16, 2015
Quick Update
Just thought I would put out a quick update on Haley's progress. I know that so many are praying and concerned, so I figured folks might want to know what's going on. Today was a really hard day for Haley. Her pain was worse than it has been since the surgery. She went in to this surgery thinking that it would be pretty easy, and it's been really tough. The nurses told us that some people have a hard time with this surgery and some do really well with it. I guess we know which camp Haley fell into.
The other factor is that she really had two surgeries (Dr. H reminded her of that last night). Also, she was not "optimized" for surgery, as she had recently had meningitis and probably encephalitis, with fevers for days. The meds she was getting for those ailments had taxed her kidneys, temporarily, which is just another stress on the body.
Dr. H came in tonight and held her hand and told her that he would like to get her up tomorrow and see how she does. He is not one bit concerned about her progress thus far, and is making sure they keep her as comfortable as possible. I really doubt that she will be discharged tomorrow. We will have to take it one day at a time.
Larry is planning on driving up tomorrow after work, and we are both looking forward to seeing him. I hate the helpless feeling of not being able to do much for her when she is in so much pain. A small thing such as turning over in bed causes her a great deal of pain and she has to inch herself along until she is in a comfortable position, then I help her replace the pillows between her knees and behind her back. It's really so pitiful.
So there you have it. Please continue to pray for God's mercy and for quick healing. It's great to be up here where they all know so much about her disease, yet we both really want to go home. Thanks, as always, for your concern. I read all of your comments to her, and it means so much to both of us.
The other factor is that she really had two surgeries (Dr. H reminded her of that last night). Also, she was not "optimized" for surgery, as she had recently had meningitis and probably encephalitis, with fevers for days. The meds she was getting for those ailments had taxed her kidneys, temporarily, which is just another stress on the body.
Dr. H came in tonight and held her hand and told her that he would like to get her up tomorrow and see how she does. He is not one bit concerned about her progress thus far, and is making sure they keep her as comfortable as possible. I really doubt that she will be discharged tomorrow. We will have to take it one day at a time.
Larry is planning on driving up tomorrow after work, and we are both looking forward to seeing him. I hate the helpless feeling of not being able to do much for her when she is in so much pain. A small thing such as turning over in bed causes her a great deal of pain and she has to inch herself along until she is in a comfortable position, then I help her replace the pillows between her knees and behind her back. It's really so pitiful.
So there you have it. Please continue to pray for God's mercy and for quick healing. It's great to be up here where they all know so much about her disease, yet we both really want to go home. Thanks, as always, for your concern. I read all of your comments to her, and it means so much to both of us.
Tuesday, April 14, 2015
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.
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.
Sunday, April 12, 2015
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.
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.
Monday, April 6, 2015
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.
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.
Saturday, March 28, 2015
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:
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.
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.
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!!
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:
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.
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!!
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!
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.
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.
.
Yesterday was a big day. We traveled to Maryland again. This time, it was to see a urologist who Dr. H referred her to so that she could have some testing done on her bladder. Apparently, if the bladder is not functioning correctly, it points to possible "tethered cord." Well, as you can imagine, the tests were no fun. They had to fill her bladder and take measurement while it emptied. (I held her hand and sang to her-- "Fill me up Buttercup!" She wasn't impressed.) Between the embarrassment and pain, she persevered and got through it. (So proud!) Anyway, there was some sort of problem with the office, so the doctor was delayed. (Side note: what is it with doctors' offices in that area that stay open so late?) Anyway, we waited 2.5 hours in a small room for the doctor to review the test with us! Thankfully, our dear friend, Kendra, was with us. I could never have taken that trip without her! When the doctor finally came in, he asked Haley several questions and showed us the printout of her test. Bottom line: she failed. (Yay!) This points to the possibility of tethered cord. I have long suspected that this was the reason for her pain and fainting. If it is, it can be surgically corrected and, hopefully, both can be alleviated. Please pray for this.
Today she has her pre-op physical and blood work in preparation for her shunt revision surgery on Tuesday. She also needs to go to the hospital and have an x-ray taken of her back so that Dr. H can see the shunt placement before surgery. Finally, we have an appointment with the Social Services department to see if she qualifies for any type of disability coverage. Hopefully, she will get a little money each month, as she is not able to work and has no discretionary spending money. If it's more than a little, she can take care of some of her medical expenses.
If you're reading this early Friday, will you pray that she can make it through all of these appointments today? I can't tell you how difficult yesterday was for her. For someone with virtually no activity level to be out for 11 hours (we got home at 10:30 pm!) and constantly sitting up, was rough. At times, she faints continually, one after the other, which she did several times yesterday. Again, Sweet Kendra, rode in the back of the van and revived her with alcohol preps while I drove like a lunatic on those crazy Washington, DC-area roads. I'm glad to be back home where traffic is virtually unheard of.
I will update this blog after her surgery on the 17th. We do covet your prayers for her and for us as we care for her. I continue to have hope that the situation will improve, and I constantly remind her that "it's not forever." We are praying fervently that that is the case. Thanks in advance, all.
Thursday, January 29, 2015
Another Surgery
Thought I write another update: Haley had a tough time recovering from her lumbar puncture (or LP, commonly known as a spinal tap.) She could barely move without excruciating pain for about 4 days. She couldn't even get out of bed to use the bathroom, so we resorted, again, to the bedpan. Dr. H called on Friday to check on her and he specifically asked about the fainting episodes. We realized that they were quite less frequent--about 5-10 times a day versus about 40-60+ times a day before the LP. He had checked the pressure around her spinal cord during the LP and told us that it was high, so he took off some fluid. The fact that her pressure was high, combined with the fact that her fainting was made better when the pressure was lowered, made him realize that 1) her shunt is not working and 2) he needs to do surgery to repair the shunt. So, he has booked her for surgery on 2/17. It seems a long way off, but I'm sure the days will go by fast.
Dr. H also suspects something called "tethered cord," which is where the spinal cord is pulled down too tightly at the lower spine. This is not uncommon in folks with EDS, and gives symptoms like Haley has been experiencing. In order to diagnose this, there are some tests that must be done, especially bladder tests. Once these are done, Dr. H will decide if she needs her cord "untethered." The tests have been scheduled for 2/12 in Maryland with a urologist who Dr. H uses for many of his patients. I understand that this is not a "fun" test, so prayers would be appreciated.
Based on some conversations I have had with others with similar conditions, I believe that Haley has tethered cord and that if it is corrected, she will have a great improvement in her symptoms. Will you pray that this is the case? We all want to see Haley return to her "normal life" as she is tired of living in a hospital bed and needing constant care.
I have had some wonderful people come and stay with her so that I can continue with my schooling. I have dropped my part-time hours at the hospital to prn (as needed), so I will be working even less. This will ensure that I get my practicum hours in so that I can graduate in May.
Thanks to so many of you for your encouraging messages to Haley and to our family. I especially appreciate all of the sympathy cards we received following the loss of my mother. They are precious reminders that we don't walk through this dark valley alone. We are grateful.
Dr. H also suspects something called "tethered cord," which is where the spinal cord is pulled down too tightly at the lower spine. This is not uncommon in folks with EDS, and gives symptoms like Haley has been experiencing. In order to diagnose this, there are some tests that must be done, especially bladder tests. Once these are done, Dr. H will decide if she needs her cord "untethered." The tests have been scheduled for 2/12 in Maryland with a urologist who Dr. H uses for many of his patients. I understand that this is not a "fun" test, so prayers would be appreciated.
Based on some conversations I have had with others with similar conditions, I believe that Haley has tethered cord and that if it is corrected, she will have a great improvement in her symptoms. Will you pray that this is the case? We all want to see Haley return to her "normal life" as she is tired of living in a hospital bed and needing constant care.
I have had some wonderful people come and stay with her so that I can continue with my schooling. I have dropped my part-time hours at the hospital to prn (as needed), so I will be working even less. This will ensure that I get my practicum hours in so that I can graduate in May.
Thanks to so many of you for your encouraging messages to Haley and to our family. I especially appreciate all of the sympathy cards we received following the loss of my mother. They are precious reminders that we don't walk through this dark valley alone. We are grateful.
Thursday, January 15, 2015
Back to Dr. H
Things have gone from bad to worse for Haley. She has had several episodes of her "fainting" spells coming one on top of the other. She has been taken by ambulance twice to the ER, only to be sent home after getting IV fluids. Sometimes she can go a pretty long time (close to an hour) without passing out; other times I've timed the passing out at every 30-50 seconds. This is so difficult on her and on us. She cannot be left alone at all. Yesterday, she began to vomit while she was passed out. Even though I am a nurse, I was ill-equipped (literally) to make sure her airway was secure. It is really easy to aspirate liquid into the lungs when consciousness is altered.
Phone calls were made to Dr. Henderson and he would like to see her at the hospital in Maryland to do a procedure to check her spinal fluid to try to find a cause for these spells. We will travel to see him on Wed. Jan 21. He will likely keep her overnight and do other tests. Please pray for an answer and a remedy for her.
Our family has also suffered another difficult trial in the past few days. My mother passed away in her sleep on January 5th and we all (except Haley) traveled to Long Island for the funeral. This was a big shock, and very, very difficult for me, especially. I have postponed the start of my semester of grad school until things calm down at home, but I am anxious to get back, as this is my final semester and I am hoping to graduate on May 7th. For now, we all live moment-to-moment, which is a challenge. We are relying on friends to come and stay with Haley so that we can run out to do a quick errand here and there, and we will be hiring folks to stay with her so that we can work and so that I can be at my practicum site.
Will you pray for us? Haley feels so isolated and discouraged. Just last evening, she had several friends stop by for a visit, and it really boosted her spirits. Please pray for:
Phone calls were made to Dr. Henderson and he would like to see her at the hospital in Maryland to do a procedure to check her spinal fluid to try to find a cause for these spells. We will travel to see him on Wed. Jan 21. He will likely keep her overnight and do other tests. Please pray for an answer and a remedy for her.
Our family has also suffered another difficult trial in the past few days. My mother passed away in her sleep on January 5th and we all (except Haley) traveled to Long Island for the funeral. This was a big shock, and very, very difficult for me, especially. I have postponed the start of my semester of grad school until things calm down at home, but I am anxious to get back, as this is my final semester and I am hoping to graduate on May 7th. For now, we all live moment-to-moment, which is a challenge. We are relying on friends to come and stay with Haley so that we can run out to do a quick errand here and there, and we will be hiring folks to stay with her so that we can work and so that I can be at my practicum site.
Will you pray for us? Haley feels so isolated and discouraged. Just last evening, she had several friends stop by for a visit, and it really boosted her spirits. Please pray for:
- Dr. H to figure this thing out and correct it
- For Haley to tolerate the procedure and the travel to and from Maryland
- For Larry and me to have the resources and stamina to care for her
- For friends/family who will offer to help us care for her
- For us to see God's hand in all of this, even when things are so bleak.
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