Monday: Take Brooke to Hematologist for her pre-dental appointment appointment. Call dentist in Albq. to confirm appointment following Monday and ask for the sedation meds to be called in.
Tuesday: Free day. Time to start dreading the dental appointment and start worrying about the risks.
Wednesday: Run by the pharmacy after work to pick up the sedation meds. They're not there.
Thursday: Call dental office to ask that the sedation meds be called in. Again. Also ask for a refill for another bottle of Chlorhexidine for her gums. She bleeds awful when we brush her teeth. I run by the pharmacy during lunch to pick up the sedation meds, Chlorhexidine and a gallon bottle of Hibiclens ($64.98) that I ordered Monday while I was there.
Friday: Appointment with Hematologist to get Neupogen shot to help protect Brooke for the dental appointment Monday. Did I mention that these shots are $3,000? Take Brooke off Coumadin and leave her off for 3 days. Have to thicken up the blood to eliminate bleeding risks!
Saturday: Start Brooke on antibiotic and remain on it for 4 days. No Coumadin.
Sunday: Antibiotic. No Coumadin. Travel 3 hours to the Hankins Hotel in Edgewood (Rick and Vera's house). This has become our "home away from home." Brooke never sleeps well here because it's not "her bed at her house." Too excited about seeing Uncle Rick.
Monday: Antibiotic. Sedation meds at 9:00 AM. Travel to dental appointment. Turn off I-40 onto University and wait for Brooke to start crying. She begs us to go straight because if she knows we don't...we're turning into the parking lot at Carrie Tingley dental clinic. The kid knows Albuquerque! We turn into the parking lot and look at the petrified face of this innocent little girl with eyes begging us not to go in. We go in. The dental appointment is at 10:00. Brooke is strapped onto an adult papoose board, head, arms, legs, chest...every inch of her is strapped down. She looks like a Brooke-Burrito. We're use to doing this, used to seeing it done but it bothers most people. She's not happy. Our nerves are already shot by now. Brooke tries to kick and does manage to scream for the entire 30 minute appointment. The hygenist has to be fast, patient and have a steady hand. Hopefully she's compassionate. The sedation meds have slowed Brooke down some, but her adrenalin keeps her fighting with all her might. Hopefully, not much bleeding occurs since the Coumadin has been stopped. The appointment ends...and SURPRISE...there are multiple issues with her teeth that will require subsequent appointment. "What? You're booked 5 months down the road?" "OK...we'll take it". What choice do we have since they are one of two dentists in our state that will see kids like Brooke. Besides, you go where insurnace pays! Amarillo and Lubbock are not options, even though they are closer. We leave the appointment, usually in her wheelchair because she's sedated. We put her in the back seat where she begs mom to "hold her." She's asleep within 1 minute. Isn't it amazing what will power can do? She refuses to sleep until after the procedure yet she sleeps pretty much for the next 4-5 hours. Note to self: NEXT TIME, GET A WHEELCHAIR THAT RECLINES! We got eat, run by Target, stop at Sam's and head home. I ride in the back seat with Brooke so she will sleep. I massage her head the full 4 hour drive with her famed Home Depot orange plastic hammar. (This is her comfort item and she likes me to rub her with it.)Our nerves are fried. Brooke is worn out. Mike is alone in the front seat listening to his iPod. The next 2-3 days are spent trying to get Brooke caught up on sleep and trying to ease her frayed nerves. It's back to work for me on Tuesday and the start of Mike's last week of freedom before school starts.
We pray for no seizures caused from the stress, no infection and no bleeding. We just pray! Please pray that all goes well Monday. We don't say the "D" word at this house because it's Brooke's greatest fear. God, be with my baby during her cleaning and afterwards. Protect her from blood issues, clots and infection.
Thursday, July 29, 2010
Friday, July 16, 2010
Stepping Outside the Box
I'm about to embark on a journey that until now - has always been tabu with me for Brooke. I'm about to start her on some non-traditional medicine. I have a really good friend who is in to homeopathic and other alternative treatment options. Her son, like Brooke, is immune compromised and has other severe medical problems. Yet he is super healthy. She swears by her products and has turned me on to a few for myself which I like. She recently introduced me to what she gives her son. Being Gena...I have to research everything, dig for the negative feedback online, talk to people about what I should do and then think it over for a few days. Well...it's like this...what other options are there? This product is sold as a natural antibiotic and is said to be effective against fighting and killing bacteria, fungus, parasites, etc. It's also touted as an immune booster. The things that Brooke can't fight or handle on her own.
I have the gel, which is going on Brooke's hands tonight to see what it will do for a couple of sores she has (she tends to suck, pick and knaw when nervous). I also have the liquid which can be drank, put in the ears, the eyes, up the nose...whatever. It's a totally safe and flexible alternative. I called the company several days ago to ask if it would have any interaction with Coumadin, GammaGlobulin or Neupogen and was told no. So, starting tomorrow morning, Brooke will start taking 1 tsp. in the AM and 1 tsp. in the PM. I'm excited to give this a try. It helps me "see" and "know" someone who is walking, talking proof of its success and I thank my pal for talking to me about it. I pray that Brooke will be another success story. This stuff has been proven to kill SARS, MRSA, Pseudomonas (this is Brooke's enemy) and many other types of infections.
Please never be afraid to go to a friend with a suggestion that could change their life. If you say or do somethat that offends them - they'll get over it. It's easier to say I'm sorry than to live with the regret of having said nothing at all. Thanks P; I love you and G and D!!
Please God...let this natural remedy work. Let this be the weapon that works against our war!!! And help ME know how to help HER.
I have the gel, which is going on Brooke's hands tonight to see what it will do for a couple of sores she has (she tends to suck, pick and knaw when nervous). I also have the liquid which can be drank, put in the ears, the eyes, up the nose...whatever. It's a totally safe and flexible alternative. I called the company several days ago to ask if it would have any interaction with Coumadin, GammaGlobulin or Neupogen and was told no. So, starting tomorrow morning, Brooke will start taking 1 tsp. in the AM and 1 tsp. in the PM. I'm excited to give this a try. It helps me "see" and "know" someone who is walking, talking proof of its success and I thank my pal for talking to me about it. I pray that Brooke will be another success story. This stuff has been proven to kill SARS, MRSA, Pseudomonas (this is Brooke's enemy) and many other types of infections.
Please never be afraid to go to a friend with a suggestion that could change their life. If you say or do somethat that offends them - they'll get over it. It's easier to say I'm sorry than to live with the regret of having said nothing at all. Thanks P; I love you and G and D!!
Please God...let this natural remedy work. Let this be the weapon that works against our war!!! And help ME know how to help HER.
Monday, July 12, 2010
Wedding - Firetruck - Snake
Brooke did so good in Briana's wedding Saturday night! She was a little doll. She smiled as she walked down the isle, waived once she got into her position and then smiled some more as Briana walked down the isle with Kirk. Briana was a beautiful bride! I'm so proud of the woman she's become and am excited for her and Jim to start their life together. May God give them the happiness that Mike and I experience. Unfortunately, Brooke paid for the excitement of Friday and Saturday by having a melt-down Saturday night, reflux, stomach ache and sleeping all day Sunday. Too much all at once and not enough strength or stamina to handle it. She's doing better today. Please continue to pray for Brooke as she nears the end of her antibiotic cycle.
A fire truck came for a visit today. Brooke knew. I put her fire truck shirt on and baked cookies...she put two and two together and just guessed it. How smart is that! I always bake the firemen cookies when they come or when we go visit them - just to say thanks. They are so good to think of Brooke and offer to come by. This makes fire truck visit #4; two at our new house and two at our former house. We love the Clovis FD!! YOU GUYS ROCK!
Went on a field trip for work today with my boss...out to Dripping Springs, NM. A zillion miles out in the middle of nowhere then 1.5 miles up a mountain. On our way down the mountain we heard something, so the guy we were with backed up. There sat a 10-button diamondback rattlesnack hissing at us. WHAT NERVE! Ha. I happened to have my camera so I took lots of pictures (from inside the SUV). Ugh. We're going back to the same area Wednesday but taking a dirt road 21 miles up to a wind farm. We've been warned to watch for cows, deer, elk and antelope on that road. And weapons aren't allowed in company vehicles or on company outings. What is that all about? You ever been to super rural NM in the heat of the summer? There are critters everywhere. Gives me the creeps just thinking about it.
A fire truck came for a visit today. Brooke knew. I put her fire truck shirt on and baked cookies...she put two and two together and just guessed it. How smart is that! I always bake the firemen cookies when they come or when we go visit them - just to say thanks. They are so good to think of Brooke and offer to come by. This makes fire truck visit #4; two at our new house and two at our former house. We love the Clovis FD!! YOU GUYS ROCK!
Went on a field trip for work today with my boss...out to Dripping Springs, NM. A zillion miles out in the middle of nowhere then 1.5 miles up a mountain. On our way down the mountain we heard something, so the guy we were with backed up. There sat a 10-button diamondback rattlesnack hissing at us. WHAT NERVE! Ha. I happened to have my camera so I took lots of pictures (from inside the SUV). Ugh. We're going back to the same area Wednesday but taking a dirt road 21 miles up to a wind farm. We've been warned to watch for cows, deer, elk and antelope on that road. And weapons aren't allowed in company vehicles or on company outings. What is that all about? You ever been to super rural NM in the heat of the summer? There are critters everywhere. Gives me the creeps just thinking about it.
Friday, July 9, 2010
Lebron -vs- Brooke
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.
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.
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!!!
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