Friends...I warn you...if you're needing a happy, feel-good blog entry...SKIP THIS ONE! Today was challenging. Brooke had her INR done this afternoon and it's back down to 1.4. What is up with these levels? Our sweet nurse calls the doctor to give him the results and as it turns out...he's on vacation. She did talk to him and he was frustrated with the levels. It seems he totally forgot to see that Brooke was taken care of during his absence. That hurt. He put Brooke back on 5 days of the big, bad Coumadin dose and 2 days of the lesser dose. The big dose for that many days scares me because that's what she was on last week when her INR spiked to 3.7. Granted, she was on Lovenox at the same time as the big dose so maybe (hopefully!) this won't tear her stomach up like it did last week. I wouldn't mind the big dose for that many days if I knew there was a check point somewhere in the middle of the week, but there's not. He ordered her next INR to be done a week from Monday. Am I missing something here? Coumadin is the most unpredictable drug there is. Please God...watch over Brooke and help me know if there's a problem I need to be aware of!!!
Some of the stress in our life comes from having to deal with injustices and the frustration of not understanding why they have to be there in the first place. Why is it be harder to get Brooke medical care and why should we have to drive 4 hours to receive it? Why is everything getting more complicated as she gets older? Did you know, and this still bothers me, that we had to hire a lawyer and pay her $2,500 just so we could keep Brooke? I'm serious. It's law...when a handicapped person turns 18, they must have legal guardianship in place or else they become wards of the state. Go figure.
If you really want a glimpse into the inner workings of raising a special needs person...check out the paperwork and the processes involved. These are enough to drive a person mad. And respite. Ever hear of respite? It sounds better than babysitter, especially when talking about a 19 year old girl. Most parents play the childcare game for 6-10 years and then it's over. Finding, interviewing, trusting, scheduling and tracking care givers for Brooke is a full time job itself. This has been a constant in our world for over 16 years. Right now we have 6 people (including Mike and I) who can care for her which is the most we've ever had. It takes a team of people (very special people) to care for Brooke and not just anyone is comfortable dealing with a medically fragile person. We are blessed to have a great support system, but it can be exhausting managing it.
Record-keeping. I am the record keepingest person that ever lived. If I could name a degree after myself it would be something pertaining to record-keeping. This has been a skill of mine that has been put to use time and time again and something that I feel is crucial at times. I kept a seizure journal to see if I could find a pattern to her seizures (didn't happen), a treatment log for 7 years so we could find a pattern for what worked and what didn't (found it and fixed it), and most recently - a blood clot medication chart that helps me keep track of her meds, side effects, and INR results. I can't remember all of this stuff, so I put it in charts, journals, tables, etc. All of these things are a part of our life that sit quietly in the background and go unnoticed by most. I have always said..."It's not Brooke that's hard, it's the paperwork and processes that go along with her."
As hard as it is, and as tiring as it's become...I wouldn't trade a second of any of it. "Thank you God for giving me the skills needed to care for this child. Thank you for giving me common sense. Thank you for giving me the ability to research when I don't have an answer, and the ability to ask questions when I'm unsure. Thank you for my perserverance and determination, even though it intimidates some people. Thank you for Brooke and everything she has taught us." ----AMEN
Friday, September 25, 2009
Thursday, September 24, 2009
Peach of a Week - Mind Readers
Brooke had a good week - FINALLY. She went back to school, had fun, and got to play with her new tube of bubbles yesterday. Life is good. Today she acts like she feels halfway decent. YAY! She's still a little congested, but maybe she's on the mend. She'll stay with ma and papa tomorrow, have another INR done, and hopefully get in some much needed rest. The INR was 1.9 on Monday and the CBC showed that she is a little anemic. Didn't I say that? My Jr. MD degree is really starting to pay off. Ha. I had already guessed she was anemic and started her back on SlowFE. Today, knock on wood, the much dreaded 5 Mg of Coumadin (the big, bad dose that we all dread) didn't tear her stomach up. Thank you God!!
Mothers learn to read the minds of their babies out of necessity but as the babies grow into toddlers and start to communicate, the need eventually goes away. Mike and I have been reading Brooke's mind for almost 20 years now. It's a gift but can be a little freaky at times. I literally know what she's thinking at times just by the look in her eyes. How weird is that? She communicates very eloquently once you've been around her enough to learn her signs, her gestures, her verbalizations, and her mannerisms. But there are instances where we remain clueless to what her needs/wants are. Please forgive us Brookie for those instances where mommy and daddy don't have a clue!! Thank you for not giving up on us!! We try...we really try very hard!!
Mothers learn to read the minds of their babies out of necessity but as the babies grow into toddlers and start to communicate, the need eventually goes away. Mike and I have been reading Brooke's mind for almost 20 years now. It's a gift but can be a little freaky at times. I literally know what she's thinking at times just by the look in her eyes. How weird is that? She communicates very eloquently once you've been around her enough to learn her signs, her gestures, her verbalizations, and her mannerisms. But there are instances where we remain clueless to what her needs/wants are. Please forgive us Brookie for those instances where mommy and daddy don't have a clue!! Thank you for not giving up on us!! We try...we really try very hard!!
Tuesday, September 22, 2009
HUH-HO!
One thing that we've learned lately that really bothers Brooke are her toes hanging out of her support stockings. Her baby toe peeked out earlier tonight and she said "HUH-HO." She wasn't about to do anything else until Mama or Yaddy stuck her toe back in. She's quirky ...there's a set place and time for things in her world and if any of it is done out of sequence, it really upsets her balance. "Her karma is thrown off." Ha. She also has a very keen sense of time and direction. She knows when it's time for us to get home and she starts worrying if we're late. And she can tell you how to get just about anywhere she's ever been. She's always had incredible senses!!
I probably shouldn't admit this because I certainly don't want anyone thinking I'm a crazy mom or anything, but there's just times that her constant "mama, mama, mama," and "the clinginess" get to me. So I do what I believe any other mom would do and I turn all of the lights on in the house. This drives her nuts! She usually likes things dark, so it keeps her occupied for a while. Recently, she's done a 360 and now all lights have to be on, so I guess the new game will be to turn them off? Hmmmm...
A real pet peeve of Brooke's are for socks to be hanging out of the drawers, chords tucked in a drawer, my curling irons not plugged in by a certain time each morning, the blinds not opened each morning, the lamp not turned on at night, etc. etc. She's very routine. As a little girl, routine used to mean everything to her, but she's learned to be more understanding and accepting of change as she's gotten older. Thank goodness. No longer does a simple rearrage of the living room furniture throw her into a tailspin like it used to.
She does help keep us in line with her constant checking of the lights, reminding us when we leave something plugged in, reminding yaddy to put on his wedding ring and watch, telling mamma not to forget her purse, unplugging our phones for us or especially when we forget to put on our seat belts. She's a regular little safety cop! What would we do without her?
I probably shouldn't admit this because I certainly don't want anyone thinking I'm a crazy mom or anything, but there's just times that her constant "mama, mama, mama," and "the clinginess" get to me. So I do what I believe any other mom would do and I turn all of the lights on in the house. This drives her nuts! She usually likes things dark, so it keeps her occupied for a while. Recently, she's done a 360 and now all lights have to be on, so I guess the new game will be to turn them off? Hmmmm...
A real pet peeve of Brooke's are for socks to be hanging out of the drawers, chords tucked in a drawer, my curling irons not plugged in by a certain time each morning, the blinds not opened each morning, the lamp not turned on at night, etc. etc. She's very routine. As a little girl, routine used to mean everything to her, but she's learned to be more understanding and accepting of change as she's gotten older. Thank goodness. No longer does a simple rearrage of the living room furniture throw her into a tailspin like it used to.
She does help keep us in line with her constant checking of the lights, reminding us when we leave something plugged in, reminding yaddy to put on his wedding ring and watch, telling mamma not to forget her purse, unplugging our phones for us or especially when we forget to put on our seat belts. She's a regular little safety cop! What would we do without her?
Sunday, September 20, 2009
Blood Too Thin - Special Friends - Family Death
Forgive me for not blogging sooner...it's been a crazy week! Brooke stayed home from school all week last week and continued to have issues until Friday. Her INR on Thursday was 3.7...that explains some of her issues! From 1.8 on Monday to 3.7 just 3 days later...that's some fast thinning of the blood. It's too thin now, so the doctor is working to bring it down and level it off. We figured out what some of the problem was...any time she takes a 5 Mg dose of Coumadin, she doesn't feel well, has little energy and her bowels get loose. 3.75 Mg or lower doesn't do that to her. So the doctor pulled her off of everything Thursday night and she started back on 5 Friday, 3.75 Saturday and will do 5 again tonight. Ugh!! I hate that dose and plan on making sure the nurse explains what it is doing to her when she calls him with INR results tomorrow. I'm fairly certain she's anemic, so I started her back on her SlowFE pills. She still has her head congestion, runny nose and nasty cough as well. She's really had a rough week! The good news is...no more Lovenox shots. YAY!!!
We took Brooke to eat lunch with the Special Olympic atheletes on Friday and then to opening ceremonies for the state equestian games that night. She had a blast. The plan was to take her to the dance Saturday night, but since it followed a 5 Mg dose of Coumadin the night before...she didn't feel up to it. Today is back to a good day since she took 3.75 last night. I hope our lives don't have to revolve around Brooke's bowel habits forever! Ha.
We lost another member of my family this week. My 2nd cousin, Charles Widner passed away Friday. It seems like we've lost so many kin in the past 10 years. My mom's side of the family is big and they're a very close family. I love being around them! They're loud, funny, personable, and very much into showing affection. My dad's side is the exact opposite.There are very few people left, we never see each other, and they sure aren't comfortable hugging or kissing you. The Barker's are down to one original sibling...my Aunt Bob. (She is my granddad's sister.) Yes, I have an Aunt Bob and Uncle Robert. :) There are no two nicer, Christian people than Robert and Bobbie Jean Widner. They are both very kind, caring, humble people. Beautiful inside and out! My thoughts and prayers go out to them right now as they mourn the passing of their son Charles a.k.a. "Hooligan." Always, always, always MAKE TIME FOR YOUR FAMILY! There is nothing more valuable.
Please continue to pray for Brooke as she tries to fight all of her health battles. For the ability to ward off her sinus/allergy issues. Ask that the new spots on her legs leave as quickly as they came and pray for her cough to go away, for her to find the stength and energy levels she needs and that the INR will level out so that the Coumadin dose can be reduced. Thank you for your continued love and support and well wishes. Mike and I couldn't do it without the love and support of our friends and family.
We took Brooke to eat lunch with the Special Olympic atheletes on Friday and then to opening ceremonies for the state equestian games that night. She had a blast. The plan was to take her to the dance Saturday night, but since it followed a 5 Mg dose of Coumadin the night before...she didn't feel up to it. Today is back to a good day since she took 3.75 last night. I hope our lives don't have to revolve around Brooke's bowel habits forever! Ha.
We lost another member of my family this week. My 2nd cousin, Charles Widner passed away Friday. It seems like we've lost so many kin in the past 10 years. My mom's side of the family is big and they're a very close family. I love being around them! They're loud, funny, personable, and very much into showing affection. My dad's side is the exact opposite.There are very few people left, we never see each other, and they sure aren't comfortable hugging or kissing you. The Barker's are down to one original sibling...my Aunt Bob. (She is my granddad's sister.) Yes, I have an Aunt Bob and Uncle Robert. :) There are no two nicer, Christian people than Robert and Bobbie Jean Widner. They are both very kind, caring, humble people. Beautiful inside and out! My thoughts and prayers go out to them right now as they mourn the passing of their son Charles a.k.a. "Hooligan." Always, always, always MAKE TIME FOR YOUR FAMILY! There is nothing more valuable.
Please continue to pray for Brooke as she tries to fight all of her health battles. For the ability to ward off her sinus/allergy issues. Ask that the new spots on her legs leave as quickly as they came and pray for her cough to go away, for her to find the stength and energy levels she needs and that the INR will level out so that the Coumadin dose can be reduced. Thank you for your continued love and support and well wishes. Mike and I couldn't do it without the love and support of our friends and family.
Tuesday, September 15, 2009
Home Again with Miss Brooke
Miss Brooke still isn't feeling well so I stayed home again with her today. My poor baby girl!! Mike is keeping her tomorrow, respite on Thursday and Nanny on Friday. With severe neutropenia it's twice as hard to fight off things but as of right now, she is somewhat perkier than she's been the past 3 days. Her nose is still running, she's complaining of her stomach hurting, she says she has reflux and still has loose bowels so we're far from well, but hopefully on the way to weller. It's pretty miserable stuff whatever it is! My goal today was to keep her hydrated and to get some food in her. Accomplished. (I think?) I got her to eat at lunch, she ate a snack she wanted and just ate some chicken and rice. I even have her drinking a little bit of gatorade, which is a big feat itself! Brooke is the root beer kid. Queen Root Beer! She loves the stuff, and I don't mind her drinking it because she needs to drink something, but I am trying to get her to alternate root beer with "at least" half a cup of gatorade every now and then. We'll see how that goes.
Mike just gave Brooke her nightly shots of Lovenox, and she cried big crocodile tears like she usually does. But tonight, she just happened to have her doctors kit on the couch beside her so we had her give US shots in our bellies. She thought that was pretty neat. And yes, she laughed. What a good sport! So forgiving. This is another one of those "life lessons" I talk about her teaching us!
Please continue to pray for Brooke and for added ability to fight this stuff and a quick return to good health. Pray for Mike and I; for strength in caring for her. It's tiring. Thank you all for the friendship!
Mike just gave Brooke her nightly shots of Lovenox, and she cried big crocodile tears like she usually does. But tonight, she just happened to have her doctors kit on the couch beside her so we had her give US shots in our bellies. She thought that was pretty neat. And yes, she laughed. What a good sport! So forgiving. This is another one of those "life lessons" I talk about her teaching us!
Please continue to pray for Brooke and for added ability to fight this stuff and a quick return to good health. Pray for Mike and I; for strength in caring for her. It's tiring. Thank you all for the friendship!
Monday, September 14, 2009
Crabby Monday Reunion
Well...after figuring out it had been 5 years since our last outing together...I arranged it and made it happen. No more excuses. No more "we need to do that again." 4 friends and I work met at Red Lobster tonight for an old tradition we fondly used to call "Crabby Monday." Not sure where the time has gone since our last supper outing, but we managed to catch up on old times tonight and have a few laughs. Gone are the buckets of crab legs and the prices from 5 years ago, but 3 of us did have 1/2 pound of crab legs (each) which were heavenly. It's a tedious and messy job, but one we were proud to tackle. Thank goodness for close friends and fun times. It's nice to get together outside of the craziness of work. Hopefully it won't take us another 5 years to make it happen again!
To those who couldn't make it...we hope to see you next time!
To those who couldn't make it...we hope to see you next time!
Home Sick - Missing my Dad - Birthday Party
Brooke is home sick today. Her allergies really bothered her over the weekend and she pretty much feels miserable. Runny nose, congested head...just ickey feeling. Early this morning she woke up with loose bowels. It could be a side effect of the Coumadin or possibly a stomach bug of some kind. Not sure. I'm home with her so I can keep a close eye on her. No fever, and I pray that stays the case! The nurse just left and Brooke's INR is 1.8. YAY. It went from 1.4 on Tuesday to 1.2 on Friday, which was frustrating. She's on 5 of Coumadin now, which is a big dose plus the Lovenox shots. Coumadin is a beast! I had to google cold medications to see which ones were safe to use with Coumadin, and at lunch I made spaghetti and worried whether or not I could put tomatoes in the sauce. Coumadin is very unforgiving, so you have to be super diligent in the research of meds, foods, side effects, etc. This has been a true learning experience for me.
Today marks 3 years since I lost my dad to cancer. Being at home today has made it harder to cope. Being at work and staying busy have helped me deal with this day the past several years, but here I sit in my PJ's at almost 2:00 in the afternoon. I miss my dad so much, but I am thankful he no longer has to live with the pain. And I know the journey with Brooke over the past 3 years would've broke his heart. He hated to see her go through the things she did, and it's been so unrelentless the past year and a half. My dad didn't live to know she had a blood clot two years ago and another right now, or salmonella, or anemia, or pseudomonas, or neutropenia. He didn't live to see her through her gallbladder surgery or the most recent 6-hour dental surgery. But when he was alive...HE LIVED. And he lives on through her. He was Brooke's best friend and I know she misses him dearly. I LOVE YOU DAD!!!
Mike brought home a birthday cake from Albq. Saturday night and we had another birthday party! Brooke and I went to Dollar Tree and spent a bit of money on birthday plates, cups, napkins, decorations, etc. We had the real deal this time! Ma and papa came and even brought Brooke gifts. How funny is that? She loved it. Life is short----it's up to us to make it sweet.
Please pray for healing for Brooke. That she feel better soon and without any more side effects from the Coumadin. Pray for her safety...bruises and bumps can be dangerous. Ask that God continue to guide Mike and I as we care for her.
Love you all!
Today marks 3 years since I lost my dad to cancer. Being at home today has made it harder to cope. Being at work and staying busy have helped me deal with this day the past several years, but here I sit in my PJ's at almost 2:00 in the afternoon. I miss my dad so much, but I am thankful he no longer has to live with the pain. And I know the journey with Brooke over the past 3 years would've broke his heart. He hated to see her go through the things she did, and it's been so unrelentless the past year and a half. My dad didn't live to know she had a blood clot two years ago and another right now, or salmonella, or anemia, or pseudomonas, or neutropenia. He didn't live to see her through her gallbladder surgery or the most recent 6-hour dental surgery. But when he was alive...HE LIVED. And he lives on through her. He was Brooke's best friend and I know she misses him dearly. I LOVE YOU DAD!!!
Mike brought home a birthday cake from Albq. Saturday night and we had another birthday party! Brooke and I went to Dollar Tree and spent a bit of money on birthday plates, cups, napkins, decorations, etc. We had the real deal this time! Ma and papa came and even brought Brooke gifts. How funny is that? She loved it. Life is short----it's up to us to make it sweet.
Please pray for healing for Brooke. That she feel better soon and without any more side effects from the Coumadin. Pray for her safety...bruises and bumps can be dangerous. Ask that God continue to guide Mike and I as we care for her.
Love you all!
Thursday, September 10, 2009
Two Prayers Answered - Aunt Vera
Today was a good day. We had two prayers answered. The first was that the internal medicine doctor I want to get Brooke in to see in Clovis accepted her as a patient (even after me telling his nurse some of her more challenging issues). It's comforting to know that not everyone is intimidated by Brooke's medical needs. We see him in 3 weeks for a physical. Thank you God! I pray he is exactly what Brooke needs.
The second prayer answered came by way of me finally getting a bag of green chilies! It was the last bag that S & S had in stock. I've tried for 3 weeks to get some bought and all I can say is...WE LIVE IN NEW MEXICO AND EVERYONE HAS THE SAME NEED! My husband is very happy! He's a green chile addict. Green chilies just make everything taste better!
Aunt Vera is in town for the week and we took her out to supper tonight. We treasure time with Vera and really miss her not living in Clovis (even though we appreciate the free B&B that we call the "Hankins Hotel" in Edgewood). She and Rick have saved us a lot of money over the past 11 years by not having to pay for motels when we are in Albq! Vera is all too familiar with the fraility of life and is a true fighter in every sense of the word. We thank God for Vera. Blood clots and Coumadin is something she too has to deal with. I told our waitress at Juanitos not to mention the "G" word because we had two blood clot gals at the table. Ha. No more guacamole for a while. Queso is ok though. :) Tomorrow Brooke gets to spend the day with Aunt Vera at Ma's house and they are planning on baking cookies. Every child needs an Aunt Vera in their lives!!! Brooke is blessed!
The second prayer answered came by way of me finally getting a bag of green chilies! It was the last bag that S & S had in stock. I've tried for 3 weeks to get some bought and all I can say is...WE LIVE IN NEW MEXICO AND EVERYONE HAS THE SAME NEED! My husband is very happy! He's a green chile addict. Green chilies just make everything taste better!
Aunt Vera is in town for the week and we took her out to supper tonight. We treasure time with Vera and really miss her not living in Clovis (even though we appreciate the free B&B that we call the "Hankins Hotel" in Edgewood). She and Rick have saved us a lot of money over the past 11 years by not having to pay for motels when we are in Albq! Vera is all too familiar with the fraility of life and is a true fighter in every sense of the word. We thank God for Vera. Blood clots and Coumadin is something she too has to deal with. I told our waitress at Juanitos not to mention the "G" word because we had two blood clot gals at the table. Ha. No more guacamole for a while. Queso is ok though. :) Tomorrow Brooke gets to spend the day with Aunt Vera at Ma's house and they are planning on baking cookies. Every child needs an Aunt Vera in their lives!!! Brooke is blessed!
Wednesday, September 9, 2009
Coumadin - New Doctor Possibilities - Ranch & The Food Book
Brooke is doing great and seems to be enjoying being back at school this week. As of Tuesday, her blood level sits at 1.4, so the Coumadin and Lovenox are slowly doing their job at "thinning" the blood.(Need to hit 2.) The bruises are very slow to heal since people with Neutropenia have a difficult time healing in the first place. "If it ain't one thing - it's another!" The right ankle and calf look really good, the knee looks better and the thigh still has a ways to go. The right leg has remained bigger than the left ever since the last blood clot, which I've been told is normal. A big thank you to my brother Kirk for "hooking us" up with 4 more pair of support stockings. Have you ever priced these? WHOLEY GUACAMOLE!! Thanks to him...we're good to go for a while.
As of two weeks ago, Clovis has a Hematologist, so we're going to give him a try. It would be so much easier to be able to deal with the blood clot and Neutropenia here instead of having to drive 4 hours for everything, especially since both appear to be long-term care. I'm waiting for Dr. Libby in Albq. to send his notes and a referral for Brooke so we can get the appointment in Clovis set up. Please pray this is a positive step and that this new doctor is patient, knowledgeable and compassionate. The underlying beauty here is if this doctor will handle the clot and Neutropenia, it makes finding a new primary care doctor a LOT easier because you take some of the elements of fear out of the equation. I've got a call in to a local Internal Medicine doctor who comes highly recommended by several of my nurse friends. I want to talk to him about Brooke and see if he would be willing to take her as a patient. I also ask for prayers in this area. I have a sense of peace lately that I haven't had in a long time, so I feel God is at work for me. I truly feel I am heading down the right path.
On a lighter and funny note...I posted a while back about Brooke being a professional cheese dissector. She is also a connoisseur of ranch dressing. She drinks it. I used to get on to her, but now I figure "Why not? What does it hurt?" What can I say...the child likes ranch! She's standing beside me in the computer room pointing to where she wants to eat tonight. She has a homemade food book that has pictures of meats, veges, fruits, salads, etc. I made it so she could help plan meals. The problem is that I put a section in the back of the book that shows restaurants. All she uses the book for is to tell us where we're taking her to eat out every night. It's been a real diet killer for us!
As of two weeks ago, Clovis has a Hematologist, so we're going to give him a try. It would be so much easier to be able to deal with the blood clot and Neutropenia here instead of having to drive 4 hours for everything, especially since both appear to be long-term care. I'm waiting for Dr. Libby in Albq. to send his notes and a referral for Brooke so we can get the appointment in Clovis set up. Please pray this is a positive step and that this new doctor is patient, knowledgeable and compassionate. The underlying beauty here is if this doctor will handle the clot and Neutropenia, it makes finding a new primary care doctor a LOT easier because you take some of the elements of fear out of the equation. I've got a call in to a local Internal Medicine doctor who comes highly recommended by several of my nurse friends. I want to talk to him about Brooke and see if he would be willing to take her as a patient. I also ask for prayers in this area. I have a sense of peace lately that I haven't had in a long time, so I feel God is at work for me. I truly feel I am heading down the right path.
On a lighter and funny note...I posted a while back about Brooke being a professional cheese dissector. She is also a connoisseur of ranch dressing. She drinks it. I used to get on to her, but now I figure "Why not? What does it hurt?" What can I say...the child likes ranch! She's standing beside me in the computer room pointing to where she wants to eat tonight. She has a homemade food book that has pictures of meats, veges, fruits, salads, etc. I made it so she could help plan meals. The problem is that I put a section in the back of the book that shows restaurants. All she uses the book for is to tell us where we're taking her to eat out every night. It's been a real diet killer for us!
Saturday, September 5, 2009
My Rock - CND - Brooke - The House
Have I mentioned lately how much I love my husband? Well...I do. He's truly the best husband and dad!! He is my rock. I had to call him during the football game last night to see how to stop Brooke's bloody nose. (He films, so it was ok to call him. Ha.) It donned on me how much I rely on him. Not only for my moral support and comfort but for his expertise and guidance in areas I lack. As a coach, he's seen lots of different kinds of injuries and I couldn't think of anyone better to ask for advice with this scenario than him. Of course, Brooke didn't take too kindly to me stuffing cotton up her nostil, but it did stop the bleeding after about 30 minutes. That was scary and unfortunately is a side effect of Coumadin.
Not sure what's gotten into me but I'm actually cooking today. Homemade chicken and dumplins, which I love. No one makes them as good as my great-grandmother, Granny Opal. I used to spent every Sunday at her house eating with her and Papa Giles. Those are great memories that I will always cherish. Not many kids get to grow up with two grandmothers, one grandfather, and a set of great-grandparents all within walking distance. I was blessed. In fact, when Brooke was born, she had 7 living grandmothers. She was a 5th generation which is priceless. Got the picture and everything!
Brooke didn't have a blood test done yesterday...the nurse will come Tuesday and Thursday of next week. Unfortunately, another several days of Lovenox shots. Ick. I was praying we would be done with those after yesterday. I gave her a bath this morning and washed her hair. The poor child has Mike's oily hair and my dry skin...what a combination! She's sitting in the living room right now watching the Hallmark channel and playing with some toys. I'm not sure what got into Mike last Wednesday when he stayed home with her, but he put new batteries in Brooke's saxophone. There are no words to the annoyance of this toy. But Brooke LOVES the silly thing. A big thank you to Brooke's friend Justin Frazier who brought her a hat and magic wand from the circus! Brooke loves them. We hope he enjoys his Mickey Mouse shirt from WDW! I finally uploaded my pictures this morning, so hopefully I can add some of those to the blog. Not sure why I've been so lazy lately about not doing it??
I'm so thankful for my mom who kept Brooke yesterday and helped me get some decorating done last night. I now have something hanging on the walls in my living room. It's a little bare still, but at least it's a start. These things take time! Mom is so meticulate with her placement of everything. She wears me out. Ha. I admire people who move, and have their homes looking showroom ready immediately. I'm not one of those people. It takes me 3-5 years to get it where I want it. I have to think about things and once I get an idea in my head...I have to find it. If you want to come visit...please do. Just be sure to do it before the flu season hits!!
Not sure what's gotten into me but I'm actually cooking today. Homemade chicken and dumplins, which I love. No one makes them as good as my great-grandmother, Granny Opal. I used to spent every Sunday at her house eating with her and Papa Giles. Those are great memories that I will always cherish. Not many kids get to grow up with two grandmothers, one grandfather, and a set of great-grandparents all within walking distance. I was blessed. In fact, when Brooke was born, she had 7 living grandmothers. She was a 5th generation which is priceless. Got the picture and everything!
Brooke didn't have a blood test done yesterday...the nurse will come Tuesday and Thursday of next week. Unfortunately, another several days of Lovenox shots. Ick. I was praying we would be done with those after yesterday. I gave her a bath this morning and washed her hair. The poor child has Mike's oily hair and my dry skin...what a combination! She's sitting in the living room right now watching the Hallmark channel and playing with some toys. I'm not sure what got into Mike last Wednesday when he stayed home with her, but he put new batteries in Brooke's saxophone. There are no words to the annoyance of this toy. But Brooke LOVES the silly thing. A big thank you to Brooke's friend Justin Frazier who brought her a hat and magic wand from the circus! Brooke loves them. We hope he enjoys his Mickey Mouse shirt from WDW! I finally uploaded my pictures this morning, so hopefully I can add some of those to the blog. Not sure why I've been so lazy lately about not doing it??
I'm so thankful for my mom who kept Brooke yesterday and helped me get some decorating done last night. I now have something hanging on the walls in my living room. It's a little bare still, but at least it's a start. These things take time! Mom is so meticulate with her placement of everything. She wears me out. Ha. I admire people who move, and have their homes looking showroom ready immediately. I'm not one of those people. It takes me 3-5 years to get it where I want it. I have to think about things and once I get an idea in my head...I have to find it. If you want to come visit...please do. Just be sure to do it before the flu season hits!!
Wednesday, September 2, 2009
Blood - Needles - Support Stockings
Sorry it's been so long since my last post...time sort of got away from me. Brooke is doing well. She's had blood tests done at home by home health nurses Monday and today (and will again on Friday). The problem has been actually hitting a vein. Brooke has little tiny rolley veins which is not good. It took 3 nurses, 2 visits and 6 sticks to get it drawn on Monday with blood results of 1.08. Today entailed 2 sticks and a call to her doctor in Albq. to see if they could do a finger prick instead. A prayer was answered when Dr. Libby ok'ed it. Using this method, the nurse had it done in a matter of seconds, in the machine, results given and a call in to Dr. Libby to report it. This is so much easier on Brooke than the traditional method! Her blood levels are slowly coming up. She's at 1.2 now and she needs to be between 2-3. All of you Coumadin experts out there please forgive me if I give mis-information. This is new to me so I'm learning it as we go. Give me a break...I was working on my PhD in Neutropenia research when this hit. Ha.
Brooke is bruising some now...her belly looks awful. There are so many blood spots and I feel like I'm running out of places to stick her. I'm ready for these Lovenox shots to be over with! We have two more days left and Dr. Libby will determine if we can stop them or if we have to go another 7 days. He's increasing the Coumadin dose starting tonight so maybe his plan is to stop the Lovenox tomorrow night? Hope so! Brooke has had 24 needle sticks since Friday. Only 8 of the 24 were not in her belly, so you can imagine how tender and sore it must be! It hurts me to give her shots each night. I'd gladly take it all from her if I could!!! We see Dr. Libby a week from Friday in Albq. to follow-up on the treatment plan, etc. Thank goodness Brooke was already established as his patient! He has made this process treatable in Clovis. It's so nice not to have to drive to Albq. for EVERY single thing...we are there enough as it is.
Brooke continues to wear her white stockings for protection and I haven't noticed her legs falling asleep in a few days so maybe her circulation is improving some? The swelling is still in her thigh, but does look better. I think things are improving. She still feels great, and is super happy today because dad stayed home with her and put new batteries in her saxophone. UGH!!! It is by far the most annoying musical toy ever created, but remains her all-time favorite. She's pretty excited because I'm taking her to school tomorrow for a visit. She misses her friends!! Hopefully she'll be back at school next week. Pray for less-clotting in her blood.
Brooke is bruising some now...her belly looks awful. There are so many blood spots and I feel like I'm running out of places to stick her. I'm ready for these Lovenox shots to be over with! We have two more days left and Dr. Libby will determine if we can stop them or if we have to go another 7 days. He's increasing the Coumadin dose starting tonight so maybe his plan is to stop the Lovenox tomorrow night? Hope so! Brooke has had 24 needle sticks since Friday. Only 8 of the 24 were not in her belly, so you can imagine how tender and sore it must be! It hurts me to give her shots each night. I'd gladly take it all from her if I could!!! We see Dr. Libby a week from Friday in Albq. to follow-up on the treatment plan, etc. Thank goodness Brooke was already established as his patient! He has made this process treatable in Clovis. It's so nice not to have to drive to Albq. for EVERY single thing...we are there enough as it is.
Brooke continues to wear her white stockings for protection and I haven't noticed her legs falling asleep in a few days so maybe her circulation is improving some? The swelling is still in her thigh, but does look better. I think things are improving. She still feels great, and is super happy today because dad stayed home with her and put new batteries in her saxophone. UGH!!! It is by far the most annoying musical toy ever created, but remains her all-time favorite. She's pretty excited because I'm taking her to school tomorrow for a visit. She misses her friends!! Hopefully she'll be back at school next week. Pray for less-clotting in her blood.
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