We're still not on the right track to helping her feel better. The last month has been one of constant pain and fatigue for her. She had her first infusion of Solumedrol by IV with the hopes of ending this continuous flare. That didn't work. She's been on 40 mg. of Prednisone(along with everything else) for a while now and nothing is getting better for her. Then last week her doctor called and suggested that we have a consult to talk about new medication options. He talked to me on the phone a couple of weeks ago about the next level of medication that he thought we needed to try but because of the risky nature of the side effects he asked me to come in so that we could talk face to face.
Her tiredness had increased quite a bit after the Solumedrol infusion. According to the fact sheet they gave me, it should have ramped her up a little bit if anything. Because they drew blood to test it during the IV procedure, I asked about the results when I arrived for the consult thinking that perhaps she was a little anemic. The doctor didn't order the blood test and didn't know it had been done, so he hadn't checked for results. Something was off in her test. Something called Sed rate. Apparently that Sed rate is an indicator of inflammation in your body. Normal for her would be between 0 and 20. Her Sed.rate is 140. The doctor said that she would have to feel horrible with that kind of inflammation in her body. He had suspected that she has vasculitis somewhere, and this confirmed it for him. So we went from thinking she was really sick to knowing she's really sick. It took away any doubts that she needed to be on a new medicine. One that has some scary side effects that I prefer not to think about, but they are there. Her doctor said that in his whole rheumatology practice that he might have ten kids that are sick enough for him to put on Imuran and she's one of them. Having the test results that leave no doubt that she needs this new medication gave me a little peace about it. It's another example of God's hand guiding us through all this.
My prayer is that this medicine works, and that she might be able to stay on a low enough dose to reap the benefits without the risks. I love this girl. She needs a life of happiness, the Jonas Brothers and frosty eyeshadow. If this is a means to that end then we will be beyond blessed.
Showing posts with label sjogren's. Show all posts
Showing posts with label sjogren's. Show all posts
Sunday, November 22, 2009
Friday, October 30, 2009
Alrighty then
The doctor FINALLY called, apologizing for his terrible phone system. He raised her Prednisone to 40 mg., which is the highest dose she's been on since her Sjogren's diagnosis a year ago. He said that there was a dramatic difference in the body's response when you go from 30 to 40 and thought she should see some improvement in a couple of days. Why then, did he not try this dosage a long time ago? He has admitted that because she is dealing with issues that he doesn't regularly treat that he may not be as aggressive as a rheumatologist that sees adults would be. She'll be seventeen in less than a year and that's the magic number when an adult rheumatologist will see her. Other than his phone system, I have no complaints about her doctor. Pediatric Rheumatologists are in very short supply (would you believe there are 10 states WITHOUT one) so I understand why it's hard to get in touch with him sometimes. Most likely, I'll be scheduling her to see another doctor the day after her seventeenth birthday. We need aggressive.
I finally found the saline gel that the ENT recommended for her nose. Not sure it's helping, but that along with saline spray and a vaporizer in her room will hopefully keep her more comfortable. Her lips have been less chapped since we started keeping her room "moister" and reducing the use of our air conditioning system. The nosebleeds continue but are less frequent. I almost feel like she should live somewhere that was steamy like a green house. We see 100 percent humidity often so I shouldn't complain.
Tonight she's going to a sleepover with her Sunday school class. A little more fun in her life would be a good thing.
I finally found the saline gel that the ENT recommended for her nose. Not sure it's helping, but that along with saline spray and a vaporizer in her room will hopefully keep her more comfortable. Her lips have been less chapped since we started keeping her room "moister" and reducing the use of our air conditioning system. The nosebleeds continue but are less frequent. I almost feel like she should live somewhere that was steamy like a green house. We see 100 percent humidity often so I shouldn't complain.
Tonight she's going to a sleepover with her Sunday school class. A little more fun in her life would be a good thing.
Tuesday, October 27, 2009
Camp Boggy Creek
Haley's rheumatologist handed us an application for us to go to a family weekend at Camp Boggy Creek on her last appointment. I filled it out not knowing just what to expect. When she was accepted to go for the weekend, I was excited but a little apprehensive as well. Camp Boggy Creek provides fun time away for kids/families dealing with some type of chronic illness. It's funded by Paul Newman Charities and other private donors. The weekend we were there for was the Juvenile Rheumatoid Arthritis and other rheumatoid conditions weekend.
For the last month Haley has been feeling pretty bad. Her relapsing polychondritis is flaring again and she's been dealing with a lot of pain. She has a new foot injury that is adding more pain to the mix. Not good. Last week, just before we went, her doctor made some adjustments to her medication that has given her some relief. He wanted her to feel better for Boggy Creek. He warned me that most people that would be there wouldn't know anything about what Haley has yet alone have any of her issues. He said that there would be kids there that had dealt with the horrible side effects from her meds though, and that she would still have fun. He kind of gave me a nice little pep talk.
We arrived on Friday evening and Haley's pals Colin and Dahlia were outside the cabin waiting for her. Dahlia was a psychiatry resident who would have a lot of jobs to do during camp, but would hang out with Haley when she could. Colin was a college senior from Kentucky who's fraternity flew him (and other members) in to volunteer for the weekend. Colin would be with her/us for the whole weekend just to make sure that Haley was comfortable and had whatever would make her happy. Whatever Haley wanted to do, Colin did. I don't know his parents, but they should be so proud of the caring young man they've raised.
From the time we got there, every minute was about the kids and families having fun. There was so much downright silliness that you couldn't help but laugh. A lot. Friday night was dinner, ice breaker activities and a camp fire. Saturday was full of activities, including time when Colin took the kids to do whatever they did while John and I went to a time for just the parents. This was the only time when there was talk of conditions, medications and the hardships of having a sick child. They separated the men from the women for this time. We thought that the boys would talk for about ten minutes then watch football. John said they talked the whole time. Not sure what went on there. As for my time with the women, it was really good. We cried for each other's children and for our own. There was something very special about that time and I was really blessed by it. These were all moms of kids that lived with pain too much of the time. There's a part of you that can't be okay when they are hurting and those women were right there with me. I didn't count on having that kind of experience and it was really a blessing.
After dinner Saturday night Haley was really in pain and wanted to put her pajamas on at 7:30. I had given her everything I could for pain at that point and knew that she needed to go home and to her bed. She was positively drained and had that look on her face that a mom just knows isn't good. We had to leave camp early. I was crying as they hugged me and told me that they understood. They drove me to pick up my car and I was still crying. I want my girl to be well and she isn't. It was so disappointing that we needed to go. Then I started to look through the photos that we took from just that day. She did more fun stuff in one day than we've done in a long time. She did have the best day, she laughed lots and really enjoyed herself. God really gave me peace in that moment. Maybe we can't do so much at once, but we need to do more to enjoy life, even if it's at a little slower pace. That's the biggest lesson I learned this weekend.
For the last month Haley has been feeling pretty bad. Her relapsing polychondritis is flaring again and she's been dealing with a lot of pain. She has a new foot injury that is adding more pain to the mix. Not good. Last week, just before we went, her doctor made some adjustments to her medication that has given her some relief. He wanted her to feel better for Boggy Creek. He warned me that most people that would be there wouldn't know anything about what Haley has yet alone have any of her issues. He said that there would be kids there that had dealt with the horrible side effects from her meds though, and that she would still have fun. He kind of gave me a nice little pep talk.
We arrived on Friday evening and Haley's pals Colin and Dahlia were outside the cabin waiting for her. Dahlia was a psychiatry resident who would have a lot of jobs to do during camp, but would hang out with Haley when she could. Colin was a college senior from Kentucky who's fraternity flew him (and other members) in to volunteer for the weekend. Colin would be with her/us for the whole weekend just to make sure that Haley was comfortable and had whatever would make her happy. Whatever Haley wanted to do, Colin did. I don't know his parents, but they should be so proud of the caring young man they've raised.
From the time we got there, every minute was about the kids and families having fun. There was so much downright silliness that you couldn't help but laugh. A lot. Friday night was dinner, ice breaker activities and a camp fire. Saturday was full of activities, including time when Colin took the kids to do whatever they did while John and I went to a time for just the parents. This was the only time when there was talk of conditions, medications and the hardships of having a sick child. They separated the men from the women for this time. We thought that the boys would talk for about ten minutes then watch football. John said they talked the whole time. Not sure what went on there. As for my time with the women, it was really good. We cried for each other's children and for our own. There was something very special about that time and I was really blessed by it. These were all moms of kids that lived with pain too much of the time. There's a part of you that can't be okay when they are hurting and those women were right there with me. I didn't count on having that kind of experience and it was really a blessing.
After dinner Saturday night Haley was really in pain and wanted to put her pajamas on at 7:30. I had given her everything I could for pain at that point and knew that she needed to go home and to her bed. She was positively drained and had that look on her face that a mom just knows isn't good. We had to leave camp early. I was crying as they hugged me and told me that they understood. They drove me to pick up my car and I was still crying. I want my girl to be well and she isn't. It was so disappointing that we needed to go. Then I started to look through the photos that we took from just that day. She did more fun stuff in one day than we've done in a long time. She did have the best day, she laughed lots and really enjoyed herself. God really gave me peace in that moment. Maybe we can't do so much at once, but we need to do more to enjoy life, even if it's at a little slower pace. That's the biggest lesson I learned this weekend.
Friday, June 12, 2009
Just this much.
So it's been a while since I've posted. Things have been difficult, and while writing usually helps me keep things in perspective, it's something I haven't been able to do. During the last six weeks Haley's pain has continued to escalate. She is limited in what pain medication she can take because of stuff she already has to take. We try to comfort her, keeping her calm and semi-distracted because that's all we can do. It's not all we can do, because we pray constantly. That's a lot because I know God still hears our prayers, but it feels like we should be doing much more when prayer for our Mighty God's healing is the most we can do.
Just over a week ago, a wonderful specialist in Atlanta has agreed to see Haley. We beat our heads against walls trying to find a doctor that would see her for the polychondritis and were rejected every time until this doctor. We are praying for him to be healthy, and for him to have wisdom when he sees Haley on July 28th. It was so miraculous for him to see her next month. We waited the entire summer last year for an appointment for her to see a pediatric rheumatologist. This would feel like nothing in comparison if it wasn't for her nose.
Her nose is where this whole polychondritis stuff started. For months, like since at least December, she would frequently complain of pain in her nose. I thought she had a pimples in it or maybe it was a side effect from something she was taking. It did look reddish at times but didn't seem like a big deal at all. When I finally remembered to mention it to her doctor, I quickly knew it was a big deal and that he should have known about it sooner. Last month, he did try to treat the inflammation by tripling her dose of prednisone for two weeks, but that didn't help and the side effects were horrible for her. He then decided that this was more than he could handle and gave us more names to contact. Now, after much (and I mean MUCH) prayer and waiting, she has an appointment with a big time rheumatologist that I believe will figure her out. But right now her nose is still what we refer to as "angry". Reddish, swollen and inflamed. The shape of her nose is changing. She is losing cartilage. We are praying for her cartilage to be healed and for this attack to stop. Now.
Still in all of this God is here. He gives us rest and we have peace in knowing that He is in charge. My heart breaks because my child is in pain but God knows that. There is a purpose in all of this and He still shows himself to be faithful and worthy of our trust. We have been given encouragement from strangers and really amazing friends in surprising ways that are clearly from Him alone. Haley is proof of God's grace being sufficient. We are so blessed.
Just over a week ago, a wonderful specialist in Atlanta has agreed to see Haley. We beat our heads against walls trying to find a doctor that would see her for the polychondritis and were rejected every time until this doctor. We are praying for him to be healthy, and for him to have wisdom when he sees Haley on July 28th. It was so miraculous for him to see her next month. We waited the entire summer last year for an appointment for her to see a pediatric rheumatologist. This would feel like nothing in comparison if it wasn't for her nose.
Her nose is where this whole polychondritis stuff started. For months, like since at least December, she would frequently complain of pain in her nose. I thought she had a pimples in it or maybe it was a side effect from something she was taking. It did look reddish at times but didn't seem like a big deal at all. When I finally remembered to mention it to her doctor, I quickly knew it was a big deal and that he should have known about it sooner. Last month, he did try to treat the inflammation by tripling her dose of prednisone for two weeks, but that didn't help and the side effects were horrible for her. He then decided that this was more than he could handle and gave us more names to contact. Now, after much (and I mean MUCH) prayer and waiting, she has an appointment with a big time rheumatologist that I believe will figure her out. But right now her nose is still what we refer to as "angry". Reddish, swollen and inflamed. The shape of her nose is changing. She is losing cartilage. We are praying for her cartilage to be healed and for this attack to stop. Now.
Still in all of this God is here. He gives us rest and we have peace in knowing that He is in charge. My heart breaks because my child is in pain but God knows that. There is a purpose in all of this and He still shows himself to be faithful and worthy of our trust. We have been given encouragement from strangers and really amazing friends in surprising ways that are clearly from Him alone. Haley is proof of God's grace being sufficient. We are so blessed.
Tuesday, April 28, 2009
Lamaze breathing, spiritually speaking
So you've probably noticed it's been forever. If there is a "you". Things have been smoothly going along for the most part. Haley and her brother got "real" cell phones. I say real because they had pay as you go type phones after the washing machine incident where someone proved he wasn't ready for the responsiblity/privilege of having a cell phone. That's about as exciting as things have been . Nice and calm. Haley has had lots of dental work done already this year. Even some cosmetic work for the first time ever. She has been mostly feeling much better. Occasional joint pain but more frequent pain in her nose. Not like sinuses, but her nose itself. It's been reddish, changed shape and seem swollen. I finally remembered to ask her doctor about it. Maybe it's a side effect of Prednisone? Maybe she's allergic to it?
Nope. Her nose is inflamed. More specifically, her cartilage is inflamed. Her ear has been as well. Not often, but she had this bright red swollen spot on her ear a week or so ago. Her doctor examined her and said that he suspects it might be relapsing polychondritis. I know because I wrote it down. He said it's "even rarer than Sjogren's and good luck finding someone that knows enough about it to diagnose it". Of course it's rarer, of course it's hard to diagnose. Of course. He said to start with an ENT. We scheduled her next appointment and left.
By the time we were in the car, my chest felt all tight. The weight of something new was on me already. I had never heard of relapsing polychondritis and had no idea what it was until I called John. Then he Googled it. PSA time: the time to find out about a new diagnosis that your child may or may not have is not when you have to drive an hour or so while trying to digest information that you never wanted to hear. But I was mostly calm and okay to drive. Then the analogy hit me. This is like Lamaze breathing.
When Julia, our oldest was on her way, I took Lamaze classes. Do they still call them that? Anyway, it was about using a focal point to help you focus on staying calm, and using breathing techniques along the way. Basically, it worked for three deliveries, two of them without any medication at all. If I could stay focused and breathe then the pain wouldn't overwhelm me and I would be okay. There would be times that John would lean on the bed and it would shake my focus and I would start to be overcome with pain and panic a little. I delivered three babies without a scream, yell or moan because I was so focused on staying calm.
So I've been trying to practice Lamaze breathing of a spiritual variety. If I am focused on God, and knowing that He is wonderous and all knowing, that He alone has designed my child with a perfect plan, then I have His perfect peace and can be calm. It's really easy to lose focus and feel that same sort of pain and panic overwhelm me but I don't have to. He has given me so much grace and my hope is in Him. He's given me such a gift, to know His power is such a blessing.
We are in the middle of waiting on doctors and really don't know what comes next. The ENT suggested we find a specialist that can diagnose relapsing polychondritis. Yesterday I put it squarely back into the lap of Haley's doctor. I'm expecting him to call but he hasn't. Maybe he's looking for a specialist, maybe he isn't. I'll give him a call tomorrow to see what we do next. But tonight, I'm sleeping. Update to follow
Nope. Her nose is inflamed. More specifically, her cartilage is inflamed. Her ear has been as well. Not often, but she had this bright red swollen spot on her ear a week or so ago. Her doctor examined her and said that he suspects it might be relapsing polychondritis. I know because I wrote it down. He said it's "even rarer than Sjogren's and good luck finding someone that knows enough about it to diagnose it". Of course it's rarer, of course it's hard to diagnose. Of course. He said to start with an ENT. We scheduled her next appointment and left.
By the time we were in the car, my chest felt all tight. The weight of something new was on me already. I had never heard of relapsing polychondritis and had no idea what it was until I called John. Then he Googled it. PSA time: the time to find out about a new diagnosis that your child may or may not have is not when you have to drive an hour or so while trying to digest information that you never wanted to hear. But I was mostly calm and okay to drive. Then the analogy hit me. This is like Lamaze breathing.
When Julia, our oldest was on her way, I took Lamaze classes. Do they still call them that? Anyway, it was about using a focal point to help you focus on staying calm, and using breathing techniques along the way. Basically, it worked for three deliveries, two of them without any medication at all. If I could stay focused and breathe then the pain wouldn't overwhelm me and I would be okay. There would be times that John would lean on the bed and it would shake my focus and I would start to be overcome with pain and panic a little. I delivered three babies without a scream, yell or moan because I was so focused on staying calm.
So I've been trying to practice Lamaze breathing of a spiritual variety. If I am focused on God, and knowing that He is wonderous and all knowing, that He alone has designed my child with a perfect plan, then I have His perfect peace and can be calm. It's really easy to lose focus and feel that same sort of pain and panic overwhelm me but I don't have to. He has given me so much grace and my hope is in Him. He's given me such a gift, to know His power is such a blessing.
We are in the middle of waiting on doctors and really don't know what comes next. The ENT suggested we find a specialist that can diagnose relapsing polychondritis. Yesterday I put it squarely back into the lap of Haley's doctor. I'm expecting him to call but he hasn't. Maybe he's looking for a specialist, maybe he isn't. I'll give him a call tomorrow to see what we do next. But tonight, I'm sleeping. Update to follow
Tuesday, February 3, 2009
Well it's been a while...
This blog has been a bit neglected. It's pretty much just been here as a dumping ground, and I don't seem to visit unless something new is happening with Haley. Pretty much it's been more of the same for her. The good news is that the medication she has been on is still working. She sees her rheumatologist next week and he'll be letting us know what will happen next in that respect. Hopefully, he's found a few other pediatric Sjogren's patients somewhere that he could get a little more treatment information from. The thought of her on Prednisone for too much longer. It's pretty scary stuff. We'll see.
Yesterday was a visit to Shriner's Hospital. You all know (if there is even a "you"?) that I love the Shriners, they took good care of her again. Her curves have increased more than they'd like to see. Considering how little she's worn that brace, it's understandable. Everyone has a breaking point, and that brace has been hers. For now, they recommended water physical therapy. With her also having the Sjogren's, Ehlers Danlos syndrome and hypotonia (low muscle tone) the therapists there thought water therapy was the safest. So I'm looking. Haley's just glad she doesn't have to wear the brace for now.
Our next stop was to see Dr. L (aka, world's best dentist!) because I noticed a new cavity last week. Actually she had two. That's how fast things go badly in her mouth. Her amazing dentist fixed everything with the least pain and we were off. The dentist had printed me out an article about the oral issues of Sjogren's patients. I started to read it in the office but thankfully, finished it at home. It contained helpful information but also information that shook me pretty good. I've read this before but choose not to acknowledge it. Patients with Sjogren's syndrome have a "twenty-fold" increased chance of developing lymphoma. Not fun to read about your child. The patients studied are generally 40-60 years old, so no one knows what to expect with patients Haley's age. Again, I choose not to think about it. But for some reason, the thought has been creeping in more than I'd like it to. God has been so good to us, and He's given me the most peace that I think any parent of a "special edition" could have. I read Luke 12 today. Verses 22-26 really helped me. Wasting time worrying won't add an hour to anyone's life. That's a good lesson for me. My trust is in the Lord.
Yesterday was a visit to Shriner's Hospital. You all know (if there is even a "you"?) that I love the Shriners, they took good care of her again. Her curves have increased more than they'd like to see. Considering how little she's worn that brace, it's understandable. Everyone has a breaking point, and that brace has been hers. For now, they recommended water physical therapy. With her also having the Sjogren's, Ehlers Danlos syndrome and hypotonia (low muscle tone) the therapists there thought water therapy was the safest. So I'm looking. Haley's just glad she doesn't have to wear the brace for now.
Our next stop was to see Dr. L (aka, world's best dentist!) because I noticed a new cavity last week. Actually she had two. That's how fast things go badly in her mouth. Her amazing dentist fixed everything with the least pain and we were off. The dentist had printed me out an article about the oral issues of Sjogren's patients. I started to read it in the office but thankfully, finished it at home. It contained helpful information but also information that shook me pretty good. I've read this before but choose not to acknowledge it. Patients with Sjogren's syndrome have a "twenty-fold" increased chance of developing lymphoma. Not fun to read about your child. The patients studied are generally 40-60 years old, so no one knows what to expect with patients Haley's age. Again, I choose not to think about it. But for some reason, the thought has been creeping in more than I'd like it to. God has been so good to us, and He's given me the most peace that I think any parent of a "special edition" could have. I read Luke 12 today. Verses 22-26 really helped me. Wasting time worrying won't add an hour to anyone's life. That's a good lesson for me. My trust is in the Lord.
Friday, October 17, 2008
mystery no more
Last night, when I thought it would be too late to hear anything from the rheumatologist, the phone rang. The results of her biopsy confirmed a diagnosis of Sjogren's sydrome. This morning she took her first dose of Prednisone. Her doctor told us that because so few kids her age are diagnosed, that there isn't a standard protocol of treatment. He is going to collect some information and see Haley the first week of November. Hopefully her inflammation and pain will subside before then.
I don't know how to feel right now. I'm numb. We needed to know what was causing her hand symptoms and pain. That answer is here, along with the cause of her dental problems. I don't like this Sjogren's syndrome. I wish my daughter didn't have it. There are parts of it that downright frighten me. That's where God steps in. I can't bear the weight of it all right now, so He is helping me out.
We've had enough of all this for now, so we are going to Disney World. Just for the evening. Haley is hurting but wants to go. She'll be on wheels so it won't be too much of a strain for her. The distraction might be nice. For all of us.
I don't know how to feel right now. I'm numb. We needed to know what was causing her hand symptoms and pain. That answer is here, along with the cause of her dental problems. I don't like this Sjogren's syndrome. I wish my daughter didn't have it. There are parts of it that downright frighten me. That's where God steps in. I can't bear the weight of it all right now, so He is helping me out.
We've had enough of all this for now, so we are going to Disney World. Just for the evening. Haley is hurting but wants to go. She'll be on wheels so it won't be too much of a strain for her. The distraction might be nice. For all of us.
Thursday, October 16, 2008
Ketchup or Catch up but never Catsup
Okay, tons has happened since my last post. The rheumatologist did a very thorough exam of Haley, we talked a lot and he ordered a bunch of blood tests. He scheduled a follow up appointment in January and instructed me to call him in two weeks for him to review the test results.
Haley woke up the next Sunday morning with an aching body and fever. She had no energy. I thought that she was getting something like the flu and just gave her motrin for the pain and tried to keep her comfy. On Wednesday her rheumatologist called with some news. I asked him if I should get a pen and he said that would be a good idea. Haley tested positive for ANA, and another antibody SSA/ro which is one of the indicators for Sjogren's syndrome. Sjogren's syndrome is an autoimmune disease that causes your white blood cells to attack your moisture producing glands. Like your saliva glands, causing severe dental problems. The doctor wouldn't have run the test in the first place because of Haley's age, but her dad asked the doctor to test her for it. Why?
Because John watched an episode of Mystery Diagnosis with me that profiled a lady that had it. While that episode sounded like some of Haley's symptoms, I had given up on suggesting potential diagnosises to doctors. But John thought she should be tested and told the doctor just that. Thankfully John did and the doctor listened. First, you should know what a "God thing" it is that John even watched that show with me, I tivo it, but he usually won't watch it. If there 's no one getting arrested, catching a fish or football or fugitive, then it's not something he' ll watch by choice. God put this diagnosis on our minds, and here we are.
Haley would need a Schirmer's test to measure the tear level in her eyes. I don't think she has dry eyes, but less than normal. She would also need a salivary gland biopsy to tell if her salivary glands were being attacked by this syndrome. Not fun and invasive. Her doctor said that he didn't know who to send Haley to for the biopsy or what lab could do the pathology. My head spun a little for the next day while I found places to have the tests done. The eye test was easy, her eye doctor (who she loves) could do it. The biopsy wasn't so easy to figure out.
In the mean time, Haley was still sick and achy. I took her to her pediatrician the day after we got the results, thinking that she might need some antibiodics to get over whatever was making her ill. Well, we found out that what she was having was inflammation caused by something. She needed to be treated by her rheumatologist for whatever this was. She was in so much pain. Her shoulders and arms were the worst. Haley wasn't sleeping and just looked gray. Her rheumatologist called in a couple of different prescriptions that didn't help. He told me that he couldn't give her anything that would interfere with her biopsy. We had to get that biopsy done fast so that he could give her something more effective for her inflammation.
I had a couple of flustered days trying to coordinate everything. Then everything fell into place. The rheumatologist's office helped us get everything lined up. God was so gracious and showed Himself faithful again. The pathology was set, doctors appointments opened up and so did the surgical center. This would happen quickly and she would get some relief when it was over. Done.
Not so fast. There were concerns regarding the specimen getting to the right place and making sure it was handled correctly. At the last minute, the decision was made to put off her procedure an extra three days and change it to the location that the pathology would be handled (a children's hospital). My first reaction was to be upset because that would mean three more days before they could give her treatment for her pain. Then it hit me. This was for the best. Another "God thing". She would be at the best facility and there would be no question regarding the specimen. I was thankful for the change. Then early the next morning the phone rang. Haley's surgeon wanted to do the procedure that afternoon at the children's hospital. She was still sleeping, and hadn't had breafast. It was perfect. We woke her up just before we had to leave. She got dressed and we had our family prayer then left. There was no time for anxiety for her. It would have been so hard for her to fall asleep if she had known that this would happen. God worked it all out. They took great care of her and the biopsy is over.
She's sore. Her throat is bothering her (from the tube while she was under) and the site of her biopsy hurts. Haley's shoulders still hurt too. I just called the doctor because she needs that better medication before the weekend. Yes, I want to know the results. I am not patient right now. At all. A big part of me thinks that the test will be inconclusive or negative. Nothing has been clear cut for Haley. Why should now be any different? Don't think for one minute that I want her to have Sjogren's syndrome. If she has it we need to know to take the best care of her. What I want is an answer that will lead to her relief.
I love Psalms 139. It is reassuring that God knew every bit of this and nothing was secret from Him. He isn't surprised by any of this, any new symptom or pain. He knew that our hearts that are blessed by having our children would break when they are hurting. That's where 2 Corinthians 12:9-10 comes in. His strength has been made perfect in our weakness. When I have been at my absolute weakest moments in the last few weeks, His strength is revealed in huge ways. There is no way that I could walk this without the reassurance that He gives me. It comes from scripture, answered prayers, kind strangers and steadfast friends. It's all going to work together for good. God is worthy of all our praise no matter what.
Haley woke up the next Sunday morning with an aching body and fever. She had no energy. I thought that she was getting something like the flu and just gave her motrin for the pain and tried to keep her comfy. On Wednesday her rheumatologist called with some news. I asked him if I should get a pen and he said that would be a good idea. Haley tested positive for ANA, and another antibody SSA/ro which is one of the indicators for Sjogren's syndrome. Sjogren's syndrome is an autoimmune disease that causes your white blood cells to attack your moisture producing glands. Like your saliva glands, causing severe dental problems. The doctor wouldn't have run the test in the first place because of Haley's age, but her dad asked the doctor to test her for it. Why?
Because John watched an episode of Mystery Diagnosis with me that profiled a lady that had it. While that episode sounded like some of Haley's symptoms, I had given up on suggesting potential diagnosises to doctors. But John thought she should be tested and told the doctor just that. Thankfully John did and the doctor listened. First, you should know what a "God thing" it is that John even watched that show with me, I tivo it, but he usually won't watch it. If there 's no one getting arrested, catching a fish or football or fugitive, then it's not something he' ll watch by choice. God put this diagnosis on our minds, and here we are.
Haley would need a Schirmer's test to measure the tear level in her eyes. I don't think she has dry eyes, but less than normal. She would also need a salivary gland biopsy to tell if her salivary glands were being attacked by this syndrome. Not fun and invasive. Her doctor said that he didn't know who to send Haley to for the biopsy or what lab could do the pathology. My head spun a little for the next day while I found places to have the tests done. The eye test was easy, her eye doctor (who she loves) could do it. The biopsy wasn't so easy to figure out.
In the mean time, Haley was still sick and achy. I took her to her pediatrician the day after we got the results, thinking that she might need some antibiodics to get over whatever was making her ill. Well, we found out that what she was having was inflammation caused by something. She needed to be treated by her rheumatologist for whatever this was. She was in so much pain. Her shoulders and arms were the worst. Haley wasn't sleeping and just looked gray. Her rheumatologist called in a couple of different prescriptions that didn't help. He told me that he couldn't give her anything that would interfere with her biopsy. We had to get that biopsy done fast so that he could give her something more effective for her inflammation.
I had a couple of flustered days trying to coordinate everything. Then everything fell into place. The rheumatologist's office helped us get everything lined up. God was so gracious and showed Himself faithful again. The pathology was set, doctors appointments opened up and so did the surgical center. This would happen quickly and she would get some relief when it was over. Done.
Not so fast. There were concerns regarding the specimen getting to the right place and making sure it was handled correctly. At the last minute, the decision was made to put off her procedure an extra three days and change it to the location that the pathology would be handled (a children's hospital). My first reaction was to be upset because that would mean three more days before they could give her treatment for her pain. Then it hit me. This was for the best. Another "God thing". She would be at the best facility and there would be no question regarding the specimen. I was thankful for the change. Then early the next morning the phone rang. Haley's surgeon wanted to do the procedure that afternoon at the children's hospital. She was still sleeping, and hadn't had breafast. It was perfect. We woke her up just before we had to leave. She got dressed and we had our family prayer then left. There was no time for anxiety for her. It would have been so hard for her to fall asleep if she had known that this would happen. God worked it all out. They took great care of her and the biopsy is over.
She's sore. Her throat is bothering her (from the tube while she was under) and the site of her biopsy hurts. Haley's shoulders still hurt too. I just called the doctor because she needs that better medication before the weekend. Yes, I want to know the results. I am not patient right now. At all. A big part of me thinks that the test will be inconclusive or negative. Nothing has been clear cut for Haley. Why should now be any different? Don't think for one minute that I want her to have Sjogren's syndrome. If she has it we need to know to take the best care of her. What I want is an answer that will lead to her relief.
I love Psalms 139. It is reassuring that God knew every bit of this and nothing was secret from Him. He isn't surprised by any of this, any new symptom or pain. He knew that our hearts that are blessed by having our children would break when they are hurting. That's where 2 Corinthians 12:9-10 comes in. His strength has been made perfect in our weakness. When I have been at my absolute weakest moments in the last few weeks, His strength is revealed in huge ways. There is no way that I could walk this without the reassurance that He gives me. It comes from scripture, answered prayers, kind strangers and steadfast friends. It's all going to work together for good. God is worthy of all our praise no matter what.
Subscribe to:
Posts (Atom)