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.
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