I've been watching all the news stories about Lebron's decision to move to Miami and something occured to me:
Why he chose to leave Ohio and move to Florida is his decision and his decision alone. I guarantee he didn't make the choice lightly or without heaviness in his heart. The bottom line, whether fans in either location like it or not,it's HIS decision to make. And, he has to do what his heart tells him to do and ultimately what will be best for his career moving forward. Sometimes decisions have to be made on NEED rather than on LOYALTY. Who can blame him for wanting to move to a team that will potentitally give him what he feel's his career has lacked...a championship.
The same goes with Brooke. As a parent, sometimes you get faced with decisions that aren't simple ones to make. Decisions that you know will affect people negatively on one end while hopefully giving you the outcome that you need on the other side. I use our recent insurance change, hospital change and doctor changes as my comparison. Brooke's been on the same insurance for 18 years and has been with the UNM system for 20 years. But it no longer worked for her. So us deciding to change everything in a course of a day was a HUGE decision to make and one that (for us) had to be made overnight. I cried about it, prayed about it, turned to anyone I thought could help me put it into perspective, but in the end...it was OUR decision. We did what we felt was best for Brooke and her healthcare moving forward. We made the move to give her more healthcare options and some new perspectives. Sometimes a new set of eyes is what you need. And while it hurt to make this decision, I know in my heart it is the right one.
So before you judge someone for a decision that you feel is wrong, unfair, hypocritical, or whatever the case may be...consider the person who had to make the decision and try to put yourself in their shoes. Most of the time, you can't begin to fathom what life in someone else's shoes feels like; therefore it's only fair to take a moment to consider the thought processes, heavy hearts, prayers and possibly tears that go into such a life-changing decision. Whether it's a severely over-paid basketball star or a chronically ill little girl...it's the same process.
Friday, July 9, 2010
Wednesday, July 7, 2010
The Rarest of the Rare
The first three years of Brooke's life about drove this momma insane. They were spent researching (before the onset of the Internet); hours and hours were spent at the library looking up things. The word "undiagnosed" about did me in! I'd find some syndrome that sort-of matched Brooke and would call nurse Betty and say "Could this be it?" Her reply was always the same, "No, Gena." I struggled with not having any resources to turn to. There were no books I could check out that would help me with Brooke. There was no camp I could send her to. There were never any answers. I did what I thought would help me and co-founded a support group for parents of disabled children in 1991. Parent-2-Parent was just what I needed, but I learned after about two years, that it wasn't what others needed. We all grieved in different ways and while I was comfortable talking about mine and being "out there" with it, ohers wanted to be left alone or they wanted to grieve in private. It was with great sadness that I finally gave it up. I realized I couldn't force my group on people, nor could I continue with the expenses of mail-outs if only 2-3 people were going to attend.
Today, not a lot has changed with Brooke in regard to not being able to find resources to help. I've moved past the insanity of "not knowing" and can easily deal with that now, but the problems that Brooke now has in a lot of ways have put us right back to the "aloneness" of 20 years ago. The medical issues she has are not ones that are easily explained or even common in some cases. I was on Amazon last night buying a book on Healthy Alternatives and decided to look into Neutropenia. Pretty much the only books you can buy for this are Merck doctor's manuals for $200. So I tried books on blood clots or Warfarin...pretty much the same thing...there were books, but nothing that really seemed to "fit" Brooke. The problem is...nothing ever seems to fit. Brooke is a round peg trying to fit into a society of square holes. This is so hard as a mother when all you want to do is to do your best in regards to mothering her.
While our gem may be rarer and more different than others; we realize she the most brilliant and precious gem of all! I'm not going to sugar coat it...life with Brooke isn't easy. She didn't come with an instruction manual; this is a discussion the big guy upstairs and I will have one day. Ha! There are no books that fit, no camp centered around her needs, and sometimes...absolutely no one who can figure any of it out, including most doctors. At at the end of the day, she is just BROOKE. Our Brookie. One of God's most awesome (and perplexing)creations. And, for some reason, he chose Mike and I to be her parents. All we know to do is pray and ask Him for guidance and direction. God is the person in charge of her care; without Him...we couldn't do it.
Thank you God for Brooke! Please continue to give us strength, wisdom and the ability to care for her.
Today, not a lot has changed with Brooke in regard to not being able to find resources to help. I've moved past the insanity of "not knowing" and can easily deal with that now, but the problems that Brooke now has in a lot of ways have put us right back to the "aloneness" of 20 years ago. The medical issues she has are not ones that are easily explained or even common in some cases. I was on Amazon last night buying a book on Healthy Alternatives and decided to look into Neutropenia. Pretty much the only books you can buy for this are Merck doctor's manuals for $200. So I tried books on blood clots or Warfarin...pretty much the same thing...there were books, but nothing that really seemed to "fit" Brooke. The problem is...nothing ever seems to fit. Brooke is a round peg trying to fit into a society of square holes. This is so hard as a mother when all you want to do is to do your best in regards to mothering her.
While our gem may be rarer and more different than others; we realize she the most brilliant and precious gem of all! I'm not going to sugar coat it...life with Brooke isn't easy. She didn't come with an instruction manual; this is a discussion the big guy upstairs and I will have one day. Ha! There are no books that fit, no camp centered around her needs, and sometimes...absolutely no one who can figure any of it out, including most doctors. At at the end of the day, she is just BROOKE. Our Brookie. One of God's most awesome (and perplexing)creations. And, for some reason, he chose Mike and I to be her parents. All we know to do is pray and ask Him for guidance and direction. God is the person in charge of her care; without Him...we couldn't do it.
Thank you God for Brooke! Please continue to give us strength, wisdom and the ability to care for her.
Monday, July 5, 2010
A lot has happened...
Home from Denver a week ago last Saturday, spot shows up on Brooke's leg Wednesday morning (wasn't there Tuesday night), admitted to the hospital in Clovis Thursday, transported via ambulance to Presby. in Albuquerque Friday and finally back home late Wednesday night. This was a NASTY infection! It went from a silver dollar size to covering her entire thigh in a matter of half a day! And that's with three doses of an antibiotic in her system! Long story short...she's on high powered antibiotics and so far so good. Please pray that these meds continue to clear up what's left of this infection and that her body is able to fight anything else that might show up. This is the challenge moving foward!
We no longer have the doctor/hospital issues we were having...I moved our insurance over to Presby. as of 7-1 and started fresh with their hospital and their doctors. I pretty much "got rid of" everything we have known for the past 20 years, with the exception of our Immunologist. Our pediatric Cardiologist is at Presby. and since we weren't getting anywhere at our old stomping grounds...I decided it was time to go where Brooke would be treated. A mom's got to do what a mom's got to do! Here's what I'm talking about: Our original cardiology appt. wasn't until next week! That's 8 weeks after a mass was found in Brooke's heart. This mass was found from a test ordered by a doctor there that has somehow fallen off the face of the earth! Haven't seen or heard from her since we saw her in early March. Our Immunologist plead with the Cardiologist to get her in last week when he learned she was in the hospital with an infection - and they wouldn't do it. That sealed the deal for me. If you don't care - I'll find doctors who do. The care we got at Presby. in Albq. was great. No complaints whatsoever. This is a prayer answered!
We did get some much needed answers finally. The mass in the heart is a blood clot that is attached to the right atrial wall. Good in that it is attached and not freely moving. It moves with the heart. Our Cardiologist feels it may have been there for a while and could've been caused from insertion of the second port 9+ years ago. A nick. Treatment? We're on Coumadin...no change there. As long as this tubing remains in her leg, she'll be on Coumadin. While a blood clot isn't great news ever, especially in the heart, it beats the two alternatives! An infection of the blood has been ruled out, which was also good news. The blood cultures didn't grow anything which told the doctors that the heart isn't infected and that the broken off tubing in her leg isn't the cause of these problems as was originally the thought. The recurring skin infections is pseudomonas, which is a bacteria on the skin that we all have. Because of Brooke's neutropenia - she isn't able to fight it. This is going to be a challenge from now on! We saw a Cardiovascular surgeon who said he could remove the tubing but since it's not the source of the infections, he wouldn't recommed it. Not with all of Brooke's other issues. The Infectious Disease doctors had her on daily shots of Neupogen for three days which brought her neutrophil levels normal. Yay. Once they stopped the shot for a day, the levels plummeted. So it was a lesson in what works and what doesn't. We learned that the daily shots she has been getting in Clovis aren't doing a thing. Like the Immunologist in Denver said, her body makes neutrophils but they are being destroyed, or held hostage by the spleen. Basically, two of Brooke's issues could be fixed IF...she weren't Brooke. If the spleen was removed, the Neutropenia would go away. If the tubing were removed from her leg, the blood clots would go away. But...neither is an option for Brooke because of all of her medical issues.
Mike took Brooke to see her Hematologist Friday and he is consulting with the ID doctor in Albq. for a course of treatment moving forward. They are looking at possibly giving her Neulasta (a longer acting form of Neupogen) twice a month. (You don't even want to know the cost of this shot! And I thought Neupogen was ridiculious!!) We've got to try to figure out a way to keep her body ahead of the infections. Please continue to pray for Brooke's body to heal. For additional methods of treating her problems. For strength, for guidance and for comfort.
Thank you all for the prayers!!!
We no longer have the doctor/hospital issues we were having...I moved our insurance over to Presby. as of 7-1 and started fresh with their hospital and their doctors. I pretty much "got rid of" everything we have known for the past 20 years, with the exception of our Immunologist. Our pediatric Cardiologist is at Presby. and since we weren't getting anywhere at our old stomping grounds...I decided it was time to go where Brooke would be treated. A mom's got to do what a mom's got to do! Here's what I'm talking about: Our original cardiology appt. wasn't until next week! That's 8 weeks after a mass was found in Brooke's heart. This mass was found from a test ordered by a doctor there that has somehow fallen off the face of the earth! Haven't seen or heard from her since we saw her in early March. Our Immunologist plead with the Cardiologist to get her in last week when he learned she was in the hospital with an infection - and they wouldn't do it. That sealed the deal for me. If you don't care - I'll find doctors who do. The care we got at Presby. in Albq. was great. No complaints whatsoever. This is a prayer answered!
We did get some much needed answers finally. The mass in the heart is a blood clot that is attached to the right atrial wall. Good in that it is attached and not freely moving. It moves with the heart. Our Cardiologist feels it may have been there for a while and could've been caused from insertion of the second port 9+ years ago. A nick. Treatment? We're on Coumadin...no change there. As long as this tubing remains in her leg, she'll be on Coumadin. While a blood clot isn't great news ever, especially in the heart, it beats the two alternatives! An infection of the blood has been ruled out, which was also good news. The blood cultures didn't grow anything which told the doctors that the heart isn't infected and that the broken off tubing in her leg isn't the cause of these problems as was originally the thought. The recurring skin infections is pseudomonas, which is a bacteria on the skin that we all have. Because of Brooke's neutropenia - she isn't able to fight it. This is going to be a challenge from now on! We saw a Cardiovascular surgeon who said he could remove the tubing but since it's not the source of the infections, he wouldn't recommed it. Not with all of Brooke's other issues. The Infectious Disease doctors had her on daily shots of Neupogen for three days which brought her neutrophil levels normal. Yay. Once they stopped the shot for a day, the levels plummeted. So it was a lesson in what works and what doesn't. We learned that the daily shots she has been getting in Clovis aren't doing a thing. Like the Immunologist in Denver said, her body makes neutrophils but they are being destroyed, or held hostage by the spleen. Basically, two of Brooke's issues could be fixed IF...she weren't Brooke. If the spleen was removed, the Neutropenia would go away. If the tubing were removed from her leg, the blood clots would go away. But...neither is an option for Brooke because of all of her medical issues.
Mike took Brooke to see her Hematologist Friday and he is consulting with the ID doctor in Albq. for a course of treatment moving forward. They are looking at possibly giving her Neulasta (a longer acting form of Neupogen) twice a month. (You don't even want to know the cost of this shot! And I thought Neupogen was ridiculious!!) We've got to try to figure out a way to keep her body ahead of the infections. Please continue to pray for Brooke's body to heal. For additional methods of treating her problems. For strength, for guidance and for comfort.
Thank you all for the prayers!!!
Wednesday, June 23, 2010
Prayers Needed - Denver Trip
Rough day with Brooke...woke up with a new skin infection that is raised around the edges. That's new! Took 6 pictures of it and sent them to Albq. To make a really long and tiring story short: I took Brooke in to have a blood culture done at noon which will take at least two days to grow, started her on antibiotic and she's had high fever on and off all day. The spot on her leg has grown to about 4 inches by 4 inches and looks worse now than it did this morning. It's hard to keep heat on it when she has 102 fever! My mom is here to help - thank goodness. Poor Mike is at school in Albq. I feel for him because I know he wants to be here with us. Right now we're trying to stay out of the ER. If this fever doesn't go down - we'll have no choice but to go. Please pray for Brooke!
Another special prayer request is for our doctors. We are having signigicant issues getting our doctors to move on anything. Not sure why healthcare at the hospital has gotten to this point, but it's putting Brooke in jeopardy. We don't feel time is on our side with some of the things we have going on yet I can't seem to make any progress in getting resolution. I've been on the phone with two doctor's, two nurses, receptionists and insurance all day long and have gotten nowhere. I'm pretty much being forced to evaluate whether switching our insurance providers will solve the problem. I'll do whatever it takes to get the coverage Brooke deserves. So frustrating! Pray for guidance for us as we move forward and for Brooke to get care. ANY care at this point would be better than what we're getting.
The trip to Denver was nice. Brooke did great. We saw an Immunologist and a Cardiologist. Both were nice and very knowledgeable. The Immunologist said the Neutropenia is caused by Brooke's spleen holding the Neutrophils hostage. If he removed the spleen - she would be cured of it. BUT...you don't want to remove a spleen on a person with Brooke's problems. Scratch that one! He suggested low grade antibiotics all the time to help with skin infections. He also is running a bunch of blood work looking into why her IgM level is so high. The Cardiologist did an EKG and told us he was 90% certain she has a heart infection. He tied the skin infections to the "tumor or clot" she has in her heart. He said it is most likely infection and that she needs to be on high-powered antibiotics for 6-8 weeks intraveneously.(OUCH!)Oddly enough, he is friends with our pediatric cardiologist in Albq. Small world! And the Immunologist in Denver trained our Immunologist in Albq. Hmmmmm....If only our Albq. doctors moved at the same pace the Denver ones do!
That's all for now. I'm pooped! Going to go hold my baby and pray this fever away!
Another special prayer request is for our doctors. We are having signigicant issues getting our doctors to move on anything. Not sure why healthcare at the hospital has gotten to this point, but it's putting Brooke in jeopardy. We don't feel time is on our side with some of the things we have going on yet I can't seem to make any progress in getting resolution. I've been on the phone with two doctor's, two nurses, receptionists and insurance all day long and have gotten nowhere. I'm pretty much being forced to evaluate whether switching our insurance providers will solve the problem. I'll do whatever it takes to get the coverage Brooke deserves. So frustrating! Pray for guidance for us as we move forward and for Brooke to get care. ANY care at this point would be better than what we're getting.
The trip to Denver was nice. Brooke did great. We saw an Immunologist and a Cardiologist. Both were nice and very knowledgeable. The Immunologist said the Neutropenia is caused by Brooke's spleen holding the Neutrophils hostage. If he removed the spleen - she would be cured of it. BUT...you don't want to remove a spleen on a person with Brooke's problems. Scratch that one! He suggested low grade antibiotics all the time to help with skin infections. He also is running a bunch of blood work looking into why her IgM level is so high. The Cardiologist did an EKG and told us he was 90% certain she has a heart infection. He tied the skin infections to the "tumor or clot" she has in her heart. He said it is most likely infection and that she needs to be on high-powered antibiotics for 6-8 weeks intraveneously.(OUCH!)Oddly enough, he is friends with our pediatric cardiologist in Albq. Small world! And the Immunologist in Denver trained our Immunologist in Albq. Hmmmmm....If only our Albq. doctors moved at the same pace the Denver ones do!
That's all for now. I'm pooped! Going to go hold my baby and pray this fever away!
Sunday, June 13, 2010
ALOHA!
We're home. Very tired...I think the time difference has hit us. That flight is a killer! It was easier going than coming which is backwards from how I figured it would be. I just can't sleep on an airplane; can't seem to get comfortable. We had a wonderful time; Oahu is a beautiful island full of many "wow" moments. There is natural beauty everywhere all the time and it was a little overwhelming at times. It made me think that maybe they got all of it all which left us not much of it? I found a cute little town I'd like to move to on the island if I were to suddenly come into half a million dollars or so. Ha.
Brooke did great while we were gone. No problems whatsoever. In fact, in true Brooke form, she was a perfect angel making the caregivers doubt everything we warned them about. In a sense, "she showed us who was boss." The infection on her leg looks much better and her skin has cleared up. Love what the antibiotics do for her; just hate that she has to go on two of them in order to get relief. She cracks me up! Instead of playing with the things we bought her (her cards and a ukulele), she's more interested in what isn't hers: she's wearing 5 shell bracelets I bought, two shell lei's, a bean lei, and tinkering with 10 keychains. Typical child...give them pots and pans over toys and they're happy as can be!
I'm busy trying to shift gears from Hawaii to Denver to ensure I have everything ready to take with us on the trip. We leave for Albq. after work Tuesday and we fly out early Wednesday morning. No claritin or benadryl from this point forward...wish us luck with that! Allergy testing is the first order of business on Wednesday, Cardiology on Thursday morning, and I have no clue of anything else planned. I just hope this trip provides something that will benefit Brooke. Answers would be great!
Thank you for your prayers and well wishes while we were in Hawaii. Turning off the worry is no easy task, but we finally managed it a few days into the trip. Mike and I needed this time together and I am so thankful we were able to go. Please pray for a safe journey to Denver, for comfort with the doctors we see, for knowledge on their behalf, and for answers if that be God's will.
Brooke did great while we were gone. No problems whatsoever. In fact, in true Brooke form, she was a perfect angel making the caregivers doubt everything we warned them about. In a sense, "she showed us who was boss." The infection on her leg looks much better and her skin has cleared up. Love what the antibiotics do for her; just hate that she has to go on two of them in order to get relief. She cracks me up! Instead of playing with the things we bought her (her cards and a ukulele), she's more interested in what isn't hers: she's wearing 5 shell bracelets I bought, two shell lei's, a bean lei, and tinkering with 10 keychains. Typical child...give them pots and pans over toys and they're happy as can be!
I'm busy trying to shift gears from Hawaii to Denver to ensure I have everything ready to take with us on the trip. We leave for Albq. after work Tuesday and we fly out early Wednesday morning. No claritin or benadryl from this point forward...wish us luck with that! Allergy testing is the first order of business on Wednesday, Cardiology on Thursday morning, and I have no clue of anything else planned. I just hope this trip provides something that will benefit Brooke. Answers would be great!
Thank you for your prayers and well wishes while we were in Hawaii. Turning off the worry is no easy task, but we finally managed it a few days into the trip. Mike and I needed this time together and I am so thankful we were able to go. Please pray for a safe journey to Denver, for comfort with the doctors we see, for knowledge on their behalf, and for answers if that be God's will.
Friday, June 4, 2010
Mahalo and Aloha
Brooke's infection looks much better this afternoon. She developed cellulitis yesterday that had us worried, but the antibiotics seem to be doing the trick on all of it. Her leg looks better and the swelling on her face has gone down considerably. These infections just take time! I'm praying for continued (fast) healing. She's been happy and active today and is driving us both nuts wanting to go to Ma's house NOW. That will be ok for about an hour until she starts asking for mom and dad. 7 days of that may drive all of the grandparents insane! Ha. Pray for comfort for Brooke; both physical comfort and mental comfort. Mom and dad are her security blanket and more so with recent illnesses. Also pray for strength for our caregivers. Physical strengh and mental strength. This is going to be a challenge for everyone.
Mike and I leave on our trip early in the morning. We fly from Amarillo to Dallas and then straight to Honolulu. I'm getting excited, but it's hard not to let the worry drive you. I've been praying about this and asking God to carry the load for me. I forget to turn things over to Him sometimes. Please pray for a safe journey for us. For a relaxing week where we can rejuvenate ourselves so that we come home - we're better parents. Our batteries definitely need to be recharged! Thank you for the prayers and for your friendship!
Mahalo. Aloha. And we'll see you in a week!!
Gena
Mike and I leave on our trip early in the morning. We fly from Amarillo to Dallas and then straight to Honolulu. I'm getting excited, but it's hard not to let the worry drive you. I've been praying about this and asking God to carry the load for me. I forget to turn things over to Him sometimes. Please pray for a safe journey for us. For a relaxing week where we can rejuvenate ourselves so that we come home - we're better parents. Our batteries definitely need to be recharged! Thank you for the prayers and for your friendship!
Mahalo. Aloha. And we'll see you in a week!!
Gena
Wednesday, June 2, 2010
These Darn Spots!
3 days from our trip and Brooke has spots. 6 on one side, 3 on the other, 2 in the middle and 1 really nasty one on the back of her leg. GEEPERS! We've been watching the 6 and 3 and so far they are smaller like mosquito bites and don't seem to be getting any worse. The 2 in the middle are (excuse the expression) zits. On the eyebrow and eyelid. Ouch. They have made her eye swell a little. We noticed the big, bad wolf last night. It's on the bend of her leg behind her knee...one of those places that will be almost impossible to heal. Not sure when it showed up...we just noticed it as she was climbing into bed last night. It's already infected. So...Mike took her to the doctor today for another round of antibiotics. Praying that they will work their magic like they did last time and that she'll be on the road to spot-freedom soon.
Went to SO state track meet two weekends ago in Albq. and Brooke had a blast as usual. Did several special "O"'s with her good friend Randy, had a lot of the family there cheering her on as she threw the tennis ball and walked her 25 meter race on Saturday, and played in the Special Orchestra. She loves seeing her friends...oh, and the dance! Loves to dance. Two gold medals came home with us and a lot of hugs from some very special people.
Hawaii in 3 days. Am I ready? You bet. Worried. Sure. Scared. Yea. Really praying about it right now...need to turn it all over to God and place it in His hands. I know He will take care of Brookie while we're gone and will give the grandparents the strength, patience and and knowledge needed to take care of our precious cargo. I guess what makes this trip so different is that we won't be a simple 2-hour flight away like we usually are. Hawaii is so far. But Mike and I are looking forward to spending time together in one of the most beautiful places in the world. We are so blessed to be able to get to go and are very thankful for Fern, Frank and my mom. Without these folks - it wouldn't be happening.
Please pray for quick healing for Brooke. For no more fever and for the spots to go away. Pray for calm nerves for her as she worries about us leaving. Pray for calm nerves for me as I struggle leaving her. Pray for a safe trip for us and for me to be able to "leave it all behind" and enjoy the special time with Mike. He deserves that. We need this trip. We need to refresh, regroup and revitalize. Ask for God to be with the grandparents as they care for Brooke. To ease any fears they may have and relax and enjoy their time with her. Pray especially for Brooke...ask God to continue to comfort her, and let her know she is never-ever-ever alone.
Thank you all, and if I don't have time to post before we leave -
ALOHA!
Went to SO state track meet two weekends ago in Albq. and Brooke had a blast as usual. Did several special "O"'s with her good friend Randy, had a lot of the family there cheering her on as she threw the tennis ball and walked her 25 meter race on Saturday, and played in the Special Orchestra. She loves seeing her friends...oh, and the dance! Loves to dance. Two gold medals came home with us and a lot of hugs from some very special people.
Hawaii in 3 days. Am I ready? You bet. Worried. Sure. Scared. Yea. Really praying about it right now...need to turn it all over to God and place it in His hands. I know He will take care of Brookie while we're gone and will give the grandparents the strength, patience and and knowledge needed to take care of our precious cargo. I guess what makes this trip so different is that we won't be a simple 2-hour flight away like we usually are. Hawaii is so far. But Mike and I are looking forward to spending time together in one of the most beautiful places in the world. We are so blessed to be able to get to go and are very thankful for Fern, Frank and my mom. Without these folks - it wouldn't be happening.
Please pray for quick healing for Brooke. For no more fever and for the spots to go away. Pray for calm nerves for her as she worries about us leaving. Pray for calm nerves for me as I struggle leaving her. Pray for a safe trip for us and for me to be able to "leave it all behind" and enjoy the special time with Mike. He deserves that. We need this trip. We need to refresh, regroup and revitalize. Ask for God to be with the grandparents as they care for Brooke. To ease any fears they may have and relax and enjoy their time with her. Pray especially for Brooke...ask God to continue to comfort her, and let her know she is never-ever-ever alone.
Thank you all, and if I don't have time to post before we leave -
ALOHA!
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