Tonight I was lucky to have a conversation with another PI Mom. Her son has a much more serious PI and is a lot sicker. I feel grateful that she has taken the time to share her wisdom on several occasions with me over the past year. Our conversation has again reminded me of how many blessings I have in my life.
I know that the past few weeks have been extremely difficult. Emotionally it has been a roller coaster for Maggie and me. I have had moments of sadness, anger, acceptance and plain out confusion. It has also deepened my faith, strengthened my relationship with my husband, helped me feel more confident as a Mom and advocate and showed me again what an amazing daughter I have.
I was reminded of all of these things plus a couple of more. It is mind-boggling that my kids were diagnosed at such an early age. The average time it takes for someone to be diagnosed with a PI is 12.4 years. Plus, to have a doctor like Dr. T - extremely lucky. The Mom I was talking to also takes her kids to Dr. T. I am not the only Mom who sings his praises and hates when he is on vacation. Thank God for a doctor who is competent and invested in my kids.
So many things to be grateful for even when the journey is a bit bumpy. God is present in all our moments and struggles. I don't know what His reasoning but I know that it is all as it should be. God's presence calms me, soothes my fears and helps me to walk through each day with strength and hope. In the end I am most grateful for having a faith and love of God to hold on to when the water gets rocky. Without His love, I would be lost in a land of dark and sadness. Again, thanks and praise for God.
Tuesday, May 31, 2011
Monday, May 30, 2011
Definition
chron·ic/ˈkränik/Adjective
1. (of an illness) Persisting for a long time or constantly recurring.
2. (of a person) Having such an illness
Above is the word I have been struggling with all day. One simple seven letter word. That word has become such a part of our life that I utter with ease and no thought. "Maggie and Ricky's primary immune deficiency is a chronic disease" So what does that really mean? I looked the definition up on google even though I already "knew" the meaning. Yup it is pretty right on about immune deficiencies. They do persist with constant infections that can last for weeks or even months.
So the question is not how to define the word but how to deal with being the second definition. Actually how to parent a child who fits the second definition listed above. The doctors have told me Maggie will probably feel sick for the time it takes them to decide what to do to help her. It could be a week, a couple weeks or even a month. Her pediatrician, who also has a pi, has even expressed the notion that she may feel sick a lot in her life.
This will be the challenge for Maggie and me. To learn to co-exist with this disease and live life on life terms is one of the goals. There will be many moments, possibly days, where she feels yucky and has to carry out her to-do-list. How she feels will be secondary to what she needs to accomplish. I already think she does this pretty well. I need to take a lesson from her on this.
The next step is to learn how to walk the line between what Maggie carries on with or when it is serious enough to warrant slowing down. That will be a harder task until she is older and better able to communicate with me. For now I have to listen to her concerns, observe her behavior and communicate with her doctors. Then I have to trust and listen to them.
Today we had to bow out of the family picnic. Someone had a new, fresh cold and I didn't want to risk complicating the situation with another virus. Then Maggie woke up with a fever and still dragging from our Saturday fun. I was disappointed and knew she would have loved to go. I had to err on the side of caution this time. Next time I may decide the social is more important. Either way I don't think there was a right or wrong answer.
The chronic part of the disease, the decision part of the disease and the trying to maintain balance part overwhelmed me today. I think that is all natural and part of this roller coaster of pi. What I had to do was talk about it and cry a bit. After a little cry I counted my blessings and reminded myself to stay in the moment. Tomorrow is another day and it will bring more choices and decisions. But that is tomorrow and for now I will just stay where I am!
1. (of an illness) Persisting for a long time or constantly recurring.
2. (of a person) Having such an illness
Above is the word I have been struggling with all day. One simple seven letter word. That word has become such a part of our life that I utter with ease and no thought. "Maggie and Ricky's primary immune deficiency is a chronic disease" So what does that really mean? I looked the definition up on google even though I already "knew" the meaning. Yup it is pretty right on about immune deficiencies. They do persist with constant infections that can last for weeks or even months.
So the question is not how to define the word but how to deal with being the second definition. Actually how to parent a child who fits the second definition listed above. The doctors have told me Maggie will probably feel sick for the time it takes them to decide what to do to help her. It could be a week, a couple weeks or even a month. Her pediatrician, who also has a pi, has even expressed the notion that she may feel sick a lot in her life.
This will be the challenge for Maggie and me. To learn to co-exist with this disease and live life on life terms is one of the goals. There will be many moments, possibly days, where she feels yucky and has to carry out her to-do-list. How she feels will be secondary to what she needs to accomplish. I already think she does this pretty well. I need to take a lesson from her on this.
The next step is to learn how to walk the line between what Maggie carries on with or when it is serious enough to warrant slowing down. That will be a harder task until she is older and better able to communicate with me. For now I have to listen to her concerns, observe her behavior and communicate with her doctors. Then I have to trust and listen to them.
Today we had to bow out of the family picnic. Someone had a new, fresh cold and I didn't want to risk complicating the situation with another virus. Then Maggie woke up with a fever and still dragging from our Saturday fun. I was disappointed and knew she would have loved to go. I had to err on the side of caution this time. Next time I may decide the social is more important. Either way I don't think there was a right or wrong answer.
The chronic part of the disease, the decision part of the disease and the trying to maintain balance part overwhelmed me today. I think that is all natural and part of this roller coaster of pi. What I had to do was talk about it and cry a bit. After a little cry I counted my blessings and reminded myself to stay in the moment. Tomorrow is another day and it will bring more choices and decisions. But that is tomorrow and for now I will just stay where I am!
Saturday, May 28, 2011
The Quiet Presence
A day at the beach flying kites was the perfect way to end a hectic week. Rick asked Maggie this morning what she would like to do. Enthusiastically she asked if we could go to the "Big Lake". We packed the kites, some snacks and headed out to the beach. It was just the right temperature and even though it was overcast, it felt like the perfect beach day.
Throughout this whole medical crisis with Maggie I have felt this quiet presence. Even in my more desperate, angry or fearful moments there has always been this stillness in my heart. I know that it was God guiding me through each feeling and moment. My faith has deepened the past month in a way I never thought possible. I have never been alone and was always able to reach an inner strength when I needed it.
Today as I stood on the beach and watched as my family flew kites I felt this presence. It was such a strong peace that came over me. I felt as if no matter what happened in our lives, we would be okay. There was a strength and a love that filled my heart and soul. I had no need for words or even tears. All was as it should be. The moment was only a few seconds and ended as Ricky ran up to hug me. But in those few seconds I knew it was God. God was sending a message of love and reassurance. I am steadfast in the knowledge of how much He loves not only me, my husband (although he needs a reintroduction) but my children. As I looked at Maggie and Ricky running around playing chase with such joy I knew that God will always hold them close. And as long as they are in His hands they are safe and loved.
Today was perfect and not because Rick and I didn't snip at each other or the kids didn't whine. It was perfect because I was graced enough to feel the strength and love of God. It was a moment but a moment I hope to hold onto forever. And somehow this moment reminded me that God is not only in those quiet moments but He is in the love Rick and I share. He is in the love we have for our children. And He is in our children's laughter and joy. God celebrates and rejoices everyday in my family. I just need to stop, take a breath and count the ways.
Throughout this whole medical crisis with Maggie I have felt this quiet presence. Even in my more desperate, angry or fearful moments there has always been this stillness in my heart. I know that it was God guiding me through each feeling and moment. My faith has deepened the past month in a way I never thought possible. I have never been alone and was always able to reach an inner strength when I needed it.
Today as I stood on the beach and watched as my family flew kites I felt this presence. It was such a strong peace that came over me. I felt as if no matter what happened in our lives, we would be okay. There was a strength and a love that filled my heart and soul. I had no need for words or even tears. All was as it should be. The moment was only a few seconds and ended as Ricky ran up to hug me. But in those few seconds I knew it was God. God was sending a message of love and reassurance. I am steadfast in the knowledge of how much He loves not only me, my husband (although he needs a reintroduction) but my children. As I looked at Maggie and Ricky running around playing chase with such joy I knew that God will always hold them close. And as long as they are in His hands they are safe and loved.
Today was perfect and not because Rick and I didn't snip at each other or the kids didn't whine. It was perfect because I was graced enough to feel the strength and love of God. It was a moment but a moment I hope to hold onto forever. And somehow this moment reminded me that God is not only in those quiet moments but He is in the love Rick and I share. He is in the love we have for our children. And He is in our children's laughter and joy. God celebrates and rejoices everyday in my family. I just need to stop, take a breath and count the ways.
Friday, May 27, 2011
A Weight is Lifted
Today it feels as if a weight has been lifted right off my shoulders. Maggie and I went to see Dr. T this morning to finish up the crazy week of medical appointments. We talked to him about the 1st and 2nd ENT appointments and I asked him some clarifications questions. I wanted to know about where she is immune wise and some more information on this recent infection.
Dr. T's feeling is her status hasn't changed on her immune deficiency. He did take blood a month early to make sure her IgG numbers are where he wants them. The only thing he is somewhat concerned about is if they have dropped. If they have we re-immunize her again. On the infection he said the big concern is her drug allergies. The infection was normal for a kid with Selective IgA Deficiency. The problem is he can't treat her how he would usually treat a patient with that infection. Her allergies limit the antibiotics that can be used. This makes it hard to get rid of the infection anywhere it is. If Ricks had the same infection, this whole thing would be a complete different story.
I have complete confidence in Dr. T and now we have a complete medical team to deal with the concerns at hand. Dr. Arnold has worked with Dr. T before on patients with immune deficiencies. They will consult together and decide the best way to treat the infection at hand. Also, they will discuss the long term concerns with the antibiotics/infections. The stress of having to manage different doctors is gone because they will communicate and I won't have to be the middle man.
It is stinky that Mags still doesn't feel well. It could take 2 to 3 weeks for them to come to some conclusion because Dr. T also wants us to pursue the migraine angle. He is going to get us into the headache doctor within the next 2 weeks. He wants to rule that out for diagnosis purposes. So we may not come to a resolution or fix for what ails Mags until end of June beginning of July. I feel bad for her and that this is becoming her "normal". She is starting to just accept how she feels and lives her life. It is good but a bit sad for her Momma.
The positives is that she is still a happy and active kid. There are so many mothers who have sick children who are not able to run and swing. They have to sit by their child's bedside and pray, not for a resolution, but a miracle. I am aware deep into my soul that I am so blessed. This may seem like a cross to bear sometimes but it holds its blessings. It tests my faith and strengthens it all at the same time. I am not the same Mom who walked into this crisis a month ago. I am better and stronger. And my girl has shown her own amazing strength and faith. I don't always know the reason or the plan but I know that God's love and strength can bring us through anything. I copied this saying off of facebook a little while ago and it says it all for me tonight:
We may not know what tomorrow holds,
but we know that God holds all of our tomorrows
and that is enough.
(When God Meets Cancer - Lynn Eib)
Dr. T's feeling is her status hasn't changed on her immune deficiency. He did take blood a month early to make sure her IgG numbers are where he wants them. The only thing he is somewhat concerned about is if they have dropped. If they have we re-immunize her again. On the infection he said the big concern is her drug allergies. The infection was normal for a kid with Selective IgA Deficiency. The problem is he can't treat her how he would usually treat a patient with that infection. Her allergies limit the antibiotics that can be used. This makes it hard to get rid of the infection anywhere it is. If Ricks had the same infection, this whole thing would be a complete different story.
I have complete confidence in Dr. T and now we have a complete medical team to deal with the concerns at hand. Dr. Arnold has worked with Dr. T before on patients with immune deficiencies. They will consult together and decide the best way to treat the infection at hand. Also, they will discuss the long term concerns with the antibiotics/infections. The stress of having to manage different doctors is gone because they will communicate and I won't have to be the middle man.
It is stinky that Mags still doesn't feel well. It could take 2 to 3 weeks for them to come to some conclusion because Dr. T also wants us to pursue the migraine angle. He is going to get us into the headache doctor within the next 2 weeks. He wants to rule that out for diagnosis purposes. So we may not come to a resolution or fix for what ails Mags until end of June beginning of July. I feel bad for her and that this is becoming her "normal". She is starting to just accept how she feels and lives her life. It is good but a bit sad for her Momma.
The positives is that she is still a happy and active kid. There are so many mothers who have sick children who are not able to run and swing. They have to sit by their child's bedside and pray, not for a resolution, but a miracle. I am aware deep into my soul that I am so blessed. This may seem like a cross to bear sometimes but it holds its blessings. It tests my faith and strengthens it all at the same time. I am not the same Mom who walked into this crisis a month ago. I am better and stronger. And my girl has shown her own amazing strength and faith. I don't always know the reason or the plan but I know that God's love and strength can bring us through anything. I copied this saying off of facebook a little while ago and it says it all for me tonight:
We may not know what tomorrow holds,
but we know that God holds all of our tomorrows
and that is enough.
(When God Meets Cancer - Lynn Eib)
Thursday, May 26, 2011
Answered Prayers
I have spent a lot of time praying the last 24 hours for a 2nd opinion ENT who would listen and communicate well. Today Maggie had her appointment and after an hour wait we finally saw the doctor. His name is Dr. Arnold and he was pretty good. He came in and talked with Maggie directly (something Dr. Sprecher never did). I started with the immune deficiency and he had lots of questions and listened to my answers. After reviewing my "list" or "timeline" I had made he examined Maggie. Finally, he said that with her immune issues and her antibiotic concerns an aggressive approach might be the way to go. First he wants to touch base with Dr. T.
AMEN and ALLELUIA!!!!!!!!!!!! A doctor who was willing to discuss and explain what is happening with my baby. And we get the bonus of he is going to consult with the person who knows the most about what is going on with her. This is not a decision made from a 15 minute exam and ct scan. It is a more well-rounded diagnosis and consult. I now feel a bit grateful that our appointment with Dr. Sprecher went so badly because we know have a team player joining Maggie's medical team (hopefully).
I am exhausted after the week's ENT journey but I think we are in the right spot. I don't know the outcome or what the whole process will be. I do know that I just have to do the next right thing and hand it over. It is out of my hands now and we just have to wait to hear. Dr. Arnold will contact us sometime next week. I have an appointment with Dr. T tomorrow for Maggie. It looks like it will be just to fill him in on the change and review with him where Maggie is. I feel like this could be a long journey so I will pray for continued patience and strength. And I think I will add a prayer for a pep up to my sense of humor : )
AMEN and ALLELUIA!!!!!!!!!!!! A doctor who was willing to discuss and explain what is happening with my baby. And we get the bonus of he is going to consult with the person who knows the most about what is going on with her. This is not a decision made from a 15 minute exam and ct scan. It is a more well-rounded diagnosis and consult. I now feel a bit grateful that our appointment with Dr. Sprecher went so badly because we know have a team player joining Maggie's medical team (hopefully).
I am exhausted after the week's ENT journey but I think we are in the right spot. I don't know the outcome or what the whole process will be. I do know that I just have to do the next right thing and hand it over. It is out of my hands now and we just have to wait to hear. Dr. Arnold will contact us sometime next week. I have an appointment with Dr. T tomorrow for Maggie. It looks like it will be just to fill him in on the change and review with him where Maggie is. I feel like this could be a long journey so I will pray for continued patience and strength. And I think I will add a prayer for a pep up to my sense of humor : )
Wednesday, May 25, 2011
God's Placement
I am still processing the happenings of the last couple of days. The anger and upset have dissipated. Now I am left with the reason and questions. I realize that the actual "plan" of the ENT may not be to bad. It is a starting point and we don't want to jump to the last resort. Surgery on Maggie's sinus is a pretty invasive procedure so taking a couple steps before hand is not really a bad idea. Just not with the original ENT!
This afternoon I had a chance to speak with Dr. Borus (Maggie's pediatrician). He spent over a half hour. He offered his opinion and support. During the conversation he helped me sort through some of the information and pinpoint the exact questions that I have. His recommendation was a 2nd opinion and certainly a meeting with Dr. T. So we have an appointment with another ENT tomorrow.
After my conversation with Dr. Borus I felt so much better. You know it is weird because he wasn't even supposed to be her pediatrician. I had talked to another doctor in the practice and she was supposed to be Maggie's doc. The day Maggie was born Dr. Borus was on rounds. He just happened to be there and was the doctor who checked her out. Again, when I struggled as a new Mom, he helped guide me through. We have been through a lot in Maggie's few short years.
We struggled with the decision to change doctors last spring when Maggie was having such trouble. We didn't and continued to work through things with him on our team. He apologized and told me that Maggie has changed the way he treats his patients. In the end, we are lucky to have him as part of the medical team that takes care of both of my children. I have great faith and belief that this man was put in our life to help us walk this journey. God has a way of sending angels to guide us and protect us. Dr. Borus has been that for us many times. I am sending many prayers of thanks since early this afternoon.
This afternoon I had a chance to speak with Dr. Borus (Maggie's pediatrician). He spent over a half hour. He offered his opinion and support. During the conversation he helped me sort through some of the information and pinpoint the exact questions that I have. His recommendation was a 2nd opinion and certainly a meeting with Dr. T. So we have an appointment with another ENT tomorrow.
After my conversation with Dr. Borus I felt so much better. You know it is weird because he wasn't even supposed to be her pediatrician. I had talked to another doctor in the practice and she was supposed to be Maggie's doc. The day Maggie was born Dr. Borus was on rounds. He just happened to be there and was the doctor who checked her out. Again, when I struggled as a new Mom, he helped guide me through. We have been through a lot in Maggie's few short years.
We struggled with the decision to change doctors last spring when Maggie was having such trouble. We didn't and continued to work through things with him on our team. He apologized and told me that Maggie has changed the way he treats his patients. In the end, we are lucky to have him as part of the medical team that takes care of both of my children. I have great faith and belief that this man was put in our life to help us walk this journey. God has a way of sending angels to guide us and protect us. Dr. Borus has been that for us many times. I am sending many prayers of thanks since early this afternoon.
Tuesday, May 24, 2011
Anger
I am not even sure how or what to write today. I took Maggie to her ENT appointment this afternoon. She still had a fever last night of 100.5 degrees and complaining about her head. I looked forward to getting some resolution to this chronic crisis that has taken over Maggie's head. My nerves were on edge because both her immunologist and pediatrician had talked about how surgery or scoping might be a great idea to get an idea of what is happening. The surgery was put out there to try and resolve the whole chronic infection part. The less infections, the less need for antibiotics and the lack of choice of antibiotics was the core of the problem.
I was prepared with all the information, medicines and dates of the last month and a half. Dr. Sprecher walked in, sat down and bluntly said, "So what is the problem?" The conversation went down hill from there. He examined Maggie very quickly and saw her basic demeanor. In 15 minutes he decided she is perfectly healthy and there is no real concern. I was advised that at this point we need to continue to utilize the Nasonex and come back in 2 weeks for ANOTHER ct scan.
I, being me, had millions of questions. I was taken aback because his assessment seemed so different from both of Maggie's primary doctors. I asked about the culture and previous ct scan that Dr. T had worked from. I was advised that a child with just a cold could present a ct scan like Maggie's scan. The cherry on top of the sundae was when he gave me a whole list of studies (which I remember nothing that he said) about giving people colds and this is how it presents. Finally, he told me that the nasal culture that Dr. T was useless. I will quote, "A normal, healthy child in daycare could get swabbed and come up with the same thing any day of the week." I can't repeat the words that went through my head at that moment. I brought up the long-term concern of to many infections and no antibiotics that work. I noted her primary immune deficiency. He barely answered and centered on the fact that maybe Maggie was pretending to be sick or maybe just has migraines.
So I left shaken and confused. I actually ran into Dr. T in the hall and told him quickly the diagnosis. He didn't sound to concerned but very busy. I processed this information and all I could think was, "Was I crazy? Did I make this up? Dr T did treat her so there must have been something right?" After talking to Rick, I made an appointment for Friday with Dr. T to discuss the situation and get the name of another ENT. I have a list of questions to go over with him about what has happened the past week or so. Until then, I will call her pediatrician about an appointment for the migraines and look into a 2nd opinion on my own.
I have no idea what is happening here with my kid. It is scary but in the end it was it is and I just have to do the best I can. I don't always understand how the immune issues effect things so I will have to ask the questions, prayer and try to make the best decisions I can. So now with all that has gone on I am so confused. It is time for a bath, some prayer and quiet mediation. And it will all probably look more clear in the morning - I hope!
I was prepared with all the information, medicines and dates of the last month and a half. Dr. Sprecher walked in, sat down and bluntly said, "So what is the problem?" The conversation went down hill from there. He examined Maggie very quickly and saw her basic demeanor. In 15 minutes he decided she is perfectly healthy and there is no real concern. I was advised that at this point we need to continue to utilize the Nasonex and come back in 2 weeks for ANOTHER ct scan.
I, being me, had millions of questions. I was taken aback because his assessment seemed so different from both of Maggie's primary doctors. I asked about the culture and previous ct scan that Dr. T had worked from. I was advised that a child with just a cold could present a ct scan like Maggie's scan. The cherry on top of the sundae was when he gave me a whole list of studies (which I remember nothing that he said) about giving people colds and this is how it presents. Finally, he told me that the nasal culture that Dr. T was useless. I will quote, "A normal, healthy child in daycare could get swabbed and come up with the same thing any day of the week." I can't repeat the words that went through my head at that moment. I brought up the long-term concern of to many infections and no antibiotics that work. I noted her primary immune deficiency. He barely answered and centered on the fact that maybe Maggie was pretending to be sick or maybe just has migraines.
So I left shaken and confused. I actually ran into Dr. T in the hall and told him quickly the diagnosis. He didn't sound to concerned but very busy. I processed this information and all I could think was, "Was I crazy? Did I make this up? Dr T did treat her so there must have been something right?" After talking to Rick, I made an appointment for Friday with Dr. T to discuss the situation and get the name of another ENT. I have a list of questions to go over with him about what has happened the past week or so. Until then, I will call her pediatrician about an appointment for the migraines and look into a 2nd opinion on my own.
I have no idea what is happening here with my kid. It is scary but in the end it was it is and I just have to do the best I can. I don't always understand how the immune issues effect things so I will have to ask the questions, prayer and try to make the best decisions I can. So now with all that has gone on I am so confused. It is time for a bath, some prayer and quiet mediation. And it will all probably look more clear in the morning - I hope!
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