Thank you to everyone that kept Lexi in your prayers. Her check-up today was really good. Her pulmonary function test was 102! Yay!!:)
They did see a lot of nasal congestion and think it may be partly from allergies b/c of the dark circles under her eyes as well. We are going to try some Zyrtec to take sparingly b/c it can really help with allergies but if taken more than a week at a time can dry up secretions and make them impossible to cough up.
Also, Lexi's prothrombin time labs have been elevated for a couple of years now. This level tells how long it takes her blood to clot and this test is often used to tell if someone's vitamin k is where it needs to be. She has taken vitamin k off and on but every time this level it checked it has remained abnormal. The nutritionist seemed pretty concerned about this especially because Lexi has started bruising more easily. So, we are going to restart a higher dose of vitamin k and recheck labs in 3 months. I pray they are normal. The nutritionist seems to think there is something else wrong causing this level to be abnormal...but I pray she is wrong.
Praising the Lord tonight and we are so thankful for Lexi's health!
Tuesday, October 16, 2012
Friday, October 12, 2012
Let us Pray...
Lexi goes to UNC on Tues for a check-up. We have just completed four weeks of Septra and Refampin. Her cough is so much better. She still has a little mucus in her lungs, but I am hoping it is the change in weather. Help me pray for clear lungs and clear upper respiratory cultures.
Thursday, September 13, 2012
We gotta sick little girl...
Please say a prayer for Lexi. She has had a cough that has been worsening for 2.5 weeks. She has had some sinus congestion, but no other symptoms. Usually this means a CF exaserbation...oh no! I called UNC this week and they have seen a lot of sick kids this week. They decided to go ahead and put her on four weeks of Rifampin and Septra.
I get a call today and Reed has had to pick Lexi up from school. She is so sick with a stomach virus. She has thrown up all day. This is not what we need. We do not need this to weaken her little body. We need all of her cells fighting for her lungs.
Please say a prayer for her healing.
I get a call today and Reed has had to pick Lexi up from school. She is so sick with a stomach virus. She has thrown up all day. This is not what we need. We do not need this to weaken her little body. We need all of her cells fighting for her lungs.
Please say a prayer for her healing.
Wednesday, August 22, 2012
If your not vaccinated...a hand shake is all you get:)
Good morning my dear friends and family. I am in need of your help.:) We need to get vaccinated!!!
As you all have probably heard, the whooping cough is back in full force. There were numerous cases diagnosed last year in Wayne and other surrounding counties. These cases have been fairly healthy people with no other health issues. Thank God, the CF community hasn't had a case yet.
There has now been a death due to this disease and the Center for Disease Control and the Cystic Fibrosis Foundation is urging everyone to get vaccinated. Most importantly those that work in the health or education field, the elderly and those that care for the elderly, anyone that would be around an infant or small children, and ABSOLUTELY EVERYONE that would be in contact with someone with Cystic Fibrosis!
I am begging you to please get vaccinated as soon as possible. If Lexi or one of the new babies that the Coley family is expecting were to catch this, it very probably would be fatal! And it would be dumb to not get a simple shot that would protect those we love.
I called the Wayne County Health Department today. They are giving vaccines Mon-Thurs 7-11:30am and 1-5pm. The cost is only $35 and they will file your insurance.
Thank you for your help.
The saying in the medical field is this..."If a person has not been vaccinated, they should not kiss or hug your child!" We love baby sugar too much to not do this! Lets do it, people:)
As you all have probably heard, the whooping cough is back in full force. There were numerous cases diagnosed last year in Wayne and other surrounding counties. These cases have been fairly healthy people with no other health issues. Thank God, the CF community hasn't had a case yet.
There has now been a death due to this disease and the Center for Disease Control and the Cystic Fibrosis Foundation is urging everyone to get vaccinated. Most importantly those that work in the health or education field, the elderly and those that care for the elderly, anyone that would be around an infant or small children, and ABSOLUTELY EVERYONE that would be in contact with someone with Cystic Fibrosis!
I am begging you to please get vaccinated as soon as possible. If Lexi or one of the new babies that the Coley family is expecting were to catch this, it very probably would be fatal! And it would be dumb to not get a simple shot that would protect those we love.
I called the Wayne County Health Department today. They are giving vaccines Mon-Thurs 7-11:30am and 1-5pm. The cost is only $35 and they will file your insurance.
Thank you for your help.
The saying in the medical field is this..."If a person has not been vaccinated, they should not kiss or hug your child!" We love baby sugar too much to not do this! Lets do it, people:)
Thursday, August 9, 2012
BIG, BIG NEWS!!!!
We have had lots of great news in our almost 9 years of dealing with CF. God has worked in so many ways thru our Lexi Loo. He healed her liver, preventing her from having to have a liver transplant. At her one year birthday, not only had 75% of Lexi's small intestines grown back...but she was ALIVE!!! The doctors said she wouldn't live to see her first birthday:) Now we have another "Great News Moment"! Lexis upper respiratory culture came back completely negative!
NEGATIVE!!!!!!!
I could shout it from a mountain!!
She has never had a completely negative lung culture. There was always at least a little mold, or a little Staph, or a little Pseudomonas. Most of the time all three.
We have made some tremendous sacrifices over the past few years. We have changed all of the products we used to unscented, we clean vigorously to prevent dust and bacteria from being in our home, and biggest/hardest of all... we ask our friends and family to do the same.
We really have focused on this more since Lexi's allergy testing in May. We had to change more products that we thought were unscented but still contained some allergy causing chemicals. We try very hard to avoid smoke outside and don't let people who have been smoking come in contact with Lexi. We don't go to homes where there have been inside animals. I even had my sitter this summer use shampoo, deodorant, soap, and lotion that I bought for her. She even put my clothes on to prevent her washing detergent from bothering Lexi...and guess what she was HAPPY to do it:) Thanks Kerri.
And guess what....thanks to our hard work diligently doing Lexi's treatments and the great people in our lives...IT HAS PAID OFF!!!!
Praising the Lord tonight...with out Him, Lexi wouldn't be here!
And as of now...she is healthier than ever!
NEGATIVE!!!!!!!
I could shout it from a mountain!!
She has never had a completely negative lung culture. There was always at least a little mold, or a little Staph, or a little Pseudomonas. Most of the time all three.
We have made some tremendous sacrifices over the past few years. We have changed all of the products we used to unscented, we clean vigorously to prevent dust and bacteria from being in our home, and biggest/hardest of all... we ask our friends and family to do the same.
We really have focused on this more since Lexi's allergy testing in May. We had to change more products that we thought were unscented but still contained some allergy causing chemicals. We try very hard to avoid smoke outside and don't let people who have been smoking come in contact with Lexi. We don't go to homes where there have been inside animals. I even had my sitter this summer use shampoo, deodorant, soap, and lotion that I bought for her. She even put my clothes on to prevent her washing detergent from bothering Lexi...and guess what she was HAPPY to do it:) Thanks Kerri.
And guess what....thanks to our hard work diligently doing Lexi's treatments and the great people in our lives...IT HAS PAID OFF!!!!
Praising the Lord tonight...with out Him, Lexi wouldn't be here!
And as of now...she is healthier than ever!
Tuesday, August 7, 2012
Cystic Fibrosis is the illness with an unusual name
Affecting kids lives is its ultimate aim
If you want to know just what it can do
Then let it come and live in you
People say “what I go through is unbelievably hard”
...
Affecting kids lives is its ultimate aim
If you want to know just what it can do
Then let it come and live in you
People say “what I go through is unbelievably hard”
...
But theres plenty out there dealt a lot worser card
Im happy, optimistic, grateful and strong
And with my friends and family life will be prosperous and long
It’s an illness we should never forget or ignore
And with todays gene technology surely its time for that cure
This girl has a secret and you better believe
She'll fight all her life for whats everyones right…
To breathe
Im happy, optimistic, grateful and strong
And with my friends and family life will be prosperous and long
It’s an illness we should never forget or ignore
And with todays gene technology surely its time for that cure
This girl has a secret and you better believe
She'll fight all her life for whats everyones right…
To breathe
Tuesday, July 31, 2012
Yay, good results!
Lexi had a really good check-up today. We are so happy. She has had this little cough since June 30th that seemed to linger, but it is better now. She hardly even coughed during her pulmonary function test. Her results were 101%...which is great! Her weight is good and her lungs sounded pretty clear. Thanks for all of the prayers. Now we wait for her upper respiratory cultures to come back. Keep praying that is good as well.
PRAISING THE LORD tonight!!!!!!!!!!!!!!!!
PRAISING THE LORD tonight!!!!!!!!!!!!!!!!
Monday, July 30, 2012
CF check up tomorrow!
Lexi goes to UNC tomorrow for her check up. Please keep her in your prayers. :)
Monday, May 7, 2012
The results are in.
Well the results are in...and the news is good:) Lexi's upper respiratory cultures came back pretty good. She has some Staph and mold growing...not good, but not new either. She often has both of these in her lungs at any given time. This is wonderful news that she isn't growing anything strange...but it still doesn't explain Lexi's persistent cough.
The doctors have decided to treat with Refampin and Septra for 4 weeks to hopefully take care of this crazy cough. Say a little prayer each day that it will.
The doctors have decided to treat with Refampin and Septra for 4 weeks to hopefully take care of this crazy cough. Say a little prayer each day that it will.
Monday, April 30, 2012
Cough, Cough, Cough...
Please keep Lexi in your prayers. She has struggled with a minor cough since Febuary. We have tried to wait it out, hoped her inhaled Cayston would help, and finally completed a three week course of Septra. None of these things worked, infact her cough seems to have worsened some:(
We go to UNC tomorrow for an unscheduled check up. Please pray that all goes well. CF can be so confusing. I am never sure if her cough is common and to be expected...or something more.
Thank you:)
We go to UNC tomorrow for an unscheduled check up. Please pray that all goes well. CF can be so confusing. I am never sure if her cough is common and to be expected...or something more.
Thank you:)
Monday, February 6, 2012
A post from another CF parent...
This is a repost from another cf parent.
Some thoughts from us parents of CFers ... this is exactly what it’s like.... There are so many people that have no clue how lonely CF can be and how hard it is to be a parent and yet be so powerless! It is like you are standing by a lake and watching your child struggle to stay above water and you have no idea how to swim!
We live every day hoping for a ...cure. We live in fear that our children won’t live long enough to experience it. We watch our kids take pill after pill and medication after medication every day. We do physiotherapy treatments which include nebulizer treatments several times a day. We give our children 15 different medications each day and that’s when they are well. When they are sick they are in the hospital for at least 2 weeks on IV antibiotics. We watch our children scream as they get held down poked and prodded by the staff there. We watch the tears run down their faces as they look at us as if we are the ones hurting them.
Our children develop bacteria that take over their lungs. It makes them work so much harder to breathe. It makes their lives shorter than they already are. Our children have an over abundance of mucus in their bodies, it overtakes their system. Some of our children cannot run around all day, they get out of breath easily. Even though our children are so sick, they always seem to smile even at the hardest times.
We listen to the comments from people that think our children “look” healthy, therefore they must be fine. But yet their lives are withering away right before our eyes.
We get dirty looks from people when our children cough so bad that they vomit. Our children are not contagious. We stay awake all hours of the night listening to our children cough so hard that they can’t even get a breath in between the spasms.
We stay in the hospital holding them, waiting for them to get better, hoping that they aren’t too weak to fight. We live in fear because we know one day our children will get sick and won’t get better. We pray it won’t be this time.
We watch families we know lose their children to this battle. We pray every day that we never have to go through that pain that we won’t have to hold our children until they take their last breath. We hold on to hope even when things seem impossible.
We sometimes feel useless. We fight everyday with our children, right by our sides in the hope that we will not lose this battle. We keep fighting for our children. We stay strong for them. We are the parents of a child with Cystic Fibrosis
Our Biggest Challenge is NOT resenting Cystic Fibrosis, BUT learning to live with it!
Some thoughts from us parents of CFers ... this is exactly what it’s like.... There are so many people that have no clue how lonely CF can be and how hard it is to be a parent and yet be so powerless! It is like you are standing by a lake and watching your child struggle to stay above water and you have no idea how to swim!
We live every day hoping for a ...cure. We live in fear that our children won’t live long enough to experience it. We watch our kids take pill after pill and medication after medication every day. We do physiotherapy treatments which include nebulizer treatments several times a day. We give our children 15 different medications each day and that’s when they are well. When they are sick they are in the hospital for at least 2 weeks on IV antibiotics. We watch our children scream as they get held down poked and prodded by the staff there. We watch the tears run down their faces as they look at us as if we are the ones hurting them.
Our children develop bacteria that take over their lungs. It makes them work so much harder to breathe. It makes their lives shorter than they already are. Our children have an over abundance of mucus in their bodies, it overtakes their system. Some of our children cannot run around all day, they get out of breath easily. Even though our children are so sick, they always seem to smile even at the hardest times.
We listen to the comments from people that think our children “look” healthy, therefore they must be fine. But yet their lives are withering away right before our eyes.
We get dirty looks from people when our children cough so bad that they vomit. Our children are not contagious. We stay awake all hours of the night listening to our children cough so hard that they can’t even get a breath in between the spasms.
We stay in the hospital holding them, waiting for them to get better, hoping that they aren’t too weak to fight. We live in fear because we know one day our children will get sick and won’t get better. We pray it won’t be this time.
We watch families we know lose their children to this battle. We pray every day that we never have to go through that pain that we won’t have to hold our children until they take their last breath. We hold on to hope even when things seem impossible.
We sometimes feel useless. We fight everyday with our children, right by our sides in the hope that we will not lose this battle. We keep fighting for our children. We stay strong for them. We are the parents of a child with Cystic Fibrosis
Our Biggest Challenge is NOT resenting Cystic Fibrosis, BUT learning to live with it!
Monday, December 19, 2011
Happy Birthday Lexi...
Eight years ago today, God blessed us with His miracle. At this very moment eight years ago, Lexi was in surgery and God was guiding the hands of the Pediatric Surgeon that would save her life. Lexi had an intestinal blockage that had ruptured. Dr. Pence spent hours cleaning and searching for enough intestines to save her little life. But what he didn't know was that God had a plan. God knew before any of us that Lexi would be special. You see, the Devil tried to take her from us...but oh no!!!! God knew Lexi was special to Him and everyone that would meet her.
My prayer is for Lexi to continue to allow God to lead her life. To guide her in every decision that she will make.
Happy Birthday my sweet girl!!!!
Thursday, December 8, 2011
Wednesday, December 7, 2011
We are Home!!!
Praising the Lord that we are home. We were discharged last night and I am pretty sure I got less sleep here than at the hospital...but doesn't matter...home is great!
They were unable to get a home health nurse to come out to the house until tomorrow (Thurs), but b/c we are IV experts...we could come on home. I don't mind being called an expert in anything...but in giving her child IV meds....not so much.
Her dosing schedule is 4am, 12noon, and 8pm. The infusion takes 2 hours...so no sleep for the weary. But that is ok...cause this is gonna make little Lexi well.
Her poor little arm is still in terrible shape. We had to change her bandage today b/c it was coming up on the edges and her sores had some drainage that made the bandage wet. It was one of the most awful experience ever!!! Lexi screamed, cried, and begged me to stop. She was in so much pain that she was twisting the sheets in her other hands and at one point was pulling her hair. IT WAS TERRIBLE!!! She was saying ouch, ohhh, Mommy please stop, it hurts so bad. I am terribly heart broken.
I have been really emotional this time for some reason. I cried at the clinic visit when they told us we had to go in, I cried as I left her as they put her to sleep, I cried when I saw her on oxygen in the recovery room, I cried on the way home last night, and of course today as I changed her dressing...sheeww. I will be glad when this is over.
They were unable to get a home health nurse to come out to the house until tomorrow (Thurs), but b/c we are IV experts...we could come on home. I don't mind being called an expert in anything...but in giving her child IV meds....not so much.
Her dosing schedule is 4am, 12noon, and 8pm. The infusion takes 2 hours...so no sleep for the weary. But that is ok...cause this is gonna make little Lexi well.
Her poor little arm is still in terrible shape. We had to change her bandage today b/c it was coming up on the edges and her sores had some drainage that made the bandage wet. It was one of the most awful experience ever!!! Lexi screamed, cried, and begged me to stop. She was in so much pain that she was twisting the sheets in her other hands and at one point was pulling her hair. IT WAS TERRIBLE!!! She was saying ouch, ohhh, Mommy please stop, it hurts so bad. I am terribly heart broken.
I have been really emotional this time for some reason. I cried at the clinic visit when they told us we had to go in, I cried as I left her as they put her to sleep, I cried when I saw her on oxygen in the recovery room, I cried on the way home last night, and of course today as I changed her dressing...sheeww. I will be glad when this is over.
Sunday, December 4, 2011
Day three..
Praising the Lord for a great day! We had a wonderful night sleep, which makes everyone so much happier during the day. :)
They did come in last night and completely stop her Vanc. This made me worry a little. The doctors have never stopped her antibiotics, especially in the middle of a dose. But they did start it back at 4am this morning. Evidently her levels were way too high:~/
Aunt Stacy and Uncle V came to visit today and brought lots of goodies and snacks. They stayed about 5 hours which was wonderful. Gave me a break from having to entertain and really made Lexi's day.
The doctors came in today and said Lexi's lungs sound good. Hopefully the cleaning they did during her Bronch will make it much easier for the antibiotics to work. They will also get the wound care team involved with her PICC line care. Lexi's skin is sooo sensitive that the PICC line dressing breaks down her skin. They are hoping that getting them involved early will help keep her skin from blistering soooo bad. The doctors are also going to get the surgical team to come by and talk to us about putting in a Porta cath for Lexi...way nervous about this.
Tonight we were able to unhook Lexi from her IVs for a couple hours. We took a bath and changed clothes...this was wonderful!
Lexi's arm that her PICC line is in has started to swell some. We had to page the doctor to come by and look at it. He ordered an ultrasound for the am thinking there may be a clot or some infection brewing. We shall see. Prayers please.
Love you all:)
They did come in last night and completely stop her Vanc. This made me worry a little. The doctors have never stopped her antibiotics, especially in the middle of a dose. But they did start it back at 4am this morning. Evidently her levels were way too high:~/
Aunt Stacy and Uncle V came to visit today and brought lots of goodies and snacks. They stayed about 5 hours which was wonderful. Gave me a break from having to entertain and really made Lexi's day.
The doctors came in today and said Lexi's lungs sound good. Hopefully the cleaning they did during her Bronch will make it much easier for the antibiotics to work. They will also get the wound care team involved with her PICC line care. Lexi's skin is sooo sensitive that the PICC line dressing breaks down her skin. They are hoping that getting them involved early will help keep her skin from blistering soooo bad. The doctors are also going to get the surgical team to come by and talk to us about putting in a Porta cath for Lexi...way nervous about this.
Tonight we were able to unhook Lexi from her IVs for a couple hours. We took a bath and changed clothes...this was wonderful!
Lexi's arm that her PICC line is in has started to swell some. We had to page the doctor to come by and look at it. He ordered an ultrasound for the am thinking there may be a clot or some infection brewing. We shall see. Prayers please.
Love you all:)
Saturday, December 3, 2011
Day two...
Today was a good day. Lexi's appetite is good and she seems to feel good. The doctors said this am that her lungs sound good. We are just hanging out waiting for her culture results to come back and her antibiotic levels to safely be where they need to be:) I must say again, how wonderful the pediatric staff is at UNC. They are so patient and kind...love them, and they all kinda think Lexi is special. Familiar faces come by to see her when they find out she is here.
We did have a restless night...The nurses came in pretty often to check her vitals and the baby next door cried alot. We are praying for a better night!
We were able to get rid of her oxygen and heart rate monitors during the day. They also pulled her IV after they were able to draw her blood from her PICC. Now we are just down to the one line. Praise the Lord!!!
They also did the first dressing change today on her PICC line. Lexi was so brave. Hoping no more changes for 7 days.
Have a good night, and thank you for all of your calls, texts, msgs, and most of all prayers.
We did have a restless night...The nurses came in pretty often to check her vitals and the baby next door cried alot. We are praying for a better night!
We were able to get rid of her oxygen and heart rate monitors during the day. They also pulled her IV after they were able to draw her blood from her PICC. Now we are just down to the one line. Praise the Lord!!!
They also did the first dressing change today on her PICC line. Lexi was so brave. Hoping no more changes for 7 days.
Have a good night, and thank you for all of your calls, texts, msgs, and most of all prayers.
Friday, December 2, 2011
Day one...
Lexi was admitted to UNC children's hospital for a Bronchoscopy, PICC placement, and to start IV antibiotics.
We came in today because the doctors were not satisfied with exactly what is going on with Lexi. Her white blood cell count was elevated, the doctors could hear some crackles when they listened to her lungs, and her chest x-ray did show some linear changes.
They are sooo wonderful here and make the kids feel so comfortable. They let me go back to the operating room with her until she went to sleep. They gave her an inhaled medication...so no ouchies until she was asleep. They even put scented chap stick in the mask to hide the foul smell of the medication. I held her hand with tears in my eyes as she fought to pull the mask off. She calmed down as the meds took effect, and then she closed her eyes. It is the same every time, but it doesn't get easier. I then kissed her and left her in good hands...
The bronchoscopy only takes about 30min. They go down her throat and into her lungs to look and get sputum samples. The doctor said that there was a lot of infection and thick mucus in her right lung. He said it was a little worse than her last Bronch.
The PICC team had a hard time getting a line this time. They had to stick her 3 times before they could get the line fed into her arm. It seems to get a little harder every time...but they got it and that is what counts. We may even talk about giving her permanent port in her chest while she is here:(
I was thrilled when they let me go back to see her in the recovery room. It seemed like forever, and her sweet face was the most beautiful thing. She had a little harder time waking up this time. They had to give her oxygen, which was different this time. That was hard to see. We tried to wean her off, but her little lips turned blue, so back on the oxygen we went...sheww. She finally ate and was able to completely come off of the oxygen.
We are now in a room and about to get her antibiotic started and hopefully have a wonderfully restful night.
Thank you all for your thoughts, messages, and prayers.
We came in today because the doctors were not satisfied with exactly what is going on with Lexi. Her white blood cell count was elevated, the doctors could hear some crackles when they listened to her lungs, and her chest x-ray did show some linear changes.
They are sooo wonderful here and make the kids feel so comfortable. They let me go back to the operating room with her until she went to sleep. They gave her an inhaled medication...so no ouchies until she was asleep. They even put scented chap stick in the mask to hide the foul smell of the medication. I held her hand with tears in my eyes as she fought to pull the mask off. She calmed down as the meds took effect, and then she closed her eyes. It is the same every time, but it doesn't get easier. I then kissed her and left her in good hands...
The bronchoscopy only takes about 30min. They go down her throat and into her lungs to look and get sputum samples. The doctor said that there was a lot of infection and thick mucus in her right lung. He said it was a little worse than her last Bronch.
The PICC team had a hard time getting a line this time. They had to stick her 3 times before they could get the line fed into her arm. It seems to get a little harder every time...but they got it and that is what counts. We may even talk about giving her permanent port in her chest while she is here:(
I was thrilled when they let me go back to see her in the recovery room. It seemed like forever, and her sweet face was the most beautiful thing. She had a little harder time waking up this time. They had to give her oxygen, which was different this time. That was hard to see. We tried to wean her off, but her little lips turned blue, so back on the oxygen we went...sheww. She finally ate and was able to completely come off of the oxygen.
We are now in a room and about to get her antibiotic started and hopefully have a wonderfully restful night.
Thank you all for your thoughts, messages, and prayers.
Wednesday, November 30, 2011
Elevated White Count...
I need all my prayer warriors!!!!!
I was looking forward to calling UNC today with an update on Lexi's cough. It seemed over the weekend to get a little better...only to have another concern to arise.
I draw Lexi's blood once a week to keep a check on her platelets (part of the blood that aids in clotting). The Zyvox that they put her on 3 weeks ago can lower these cells and we had to make sure Lexi's count stayed at a safe level. Last week they were a little low, but nothing to be alarmed about. We just watch Lexi close to make sure she didn't have any signs of internal bleeding and didn't let her play too rough for fear of an injury that couldn't heal. When a blood count is checked it includes a white cell count as well. This is the cell in the body that comes running when there is infection. It was a little high last week at 11.1...this week it is over 15!!!!! Not good. Her normal count is 8 or 9, so this is double what it normally is. They were not concerned last week, but really concerned now. Especially because she should be getting better. This is her last week of antibiotics.
So off to UNC we go tomorrow to see what is going on. Not sure what they will do yet...but those of you in health care know, it is hard to diagnose anything over the phone:)
Please pray that they find out what is going on so that my sweet angel can go back to not having a daily cough at ALL! With all that they have treated her with over the last few months, my fear is that we will have to do IV therapy. I do not want to spend Christmas in the hospital!!!
Love you all, and am so very thankful for everyone that follows my post...join, so I know who you are:)
I was looking forward to calling UNC today with an update on Lexi's cough. It seemed over the weekend to get a little better...only to have another concern to arise.
I draw Lexi's blood once a week to keep a check on her platelets (part of the blood that aids in clotting). The Zyvox that they put her on 3 weeks ago can lower these cells and we had to make sure Lexi's count stayed at a safe level. Last week they were a little low, but nothing to be alarmed about. We just watch Lexi close to make sure she didn't have any signs of internal bleeding and didn't let her play too rough for fear of an injury that couldn't heal. When a blood count is checked it includes a white cell count as well. This is the cell in the body that comes running when there is infection. It was a little high last week at 11.1...this week it is over 15!!!!! Not good. Her normal count is 8 or 9, so this is double what it normally is. They were not concerned last week, but really concerned now. Especially because she should be getting better. This is her last week of antibiotics.
So off to UNC we go tomorrow to see what is going on. Not sure what they will do yet...but those of you in health care know, it is hard to diagnose anything over the phone:)
Please pray that they find out what is going on so that my sweet angel can go back to not having a daily cough at ALL! With all that they have treated her with over the last few months, my fear is that we will have to do IV therapy. I do not want to spend Christmas in the hospital!!!
Love you all, and am so very thankful for everyone that follows my post...join, so I know who you are:)
Thursday, November 17, 2011
Did you know...Third Hand Smoke
What is third-hand smoke, and why is it a concern?
Answer
from Lowell Dale, M.D.
Third-hand smoke is generally considered to be residual nicotine and other chemicals left on a variety of indoor surfaces by tobacco smoke. This residue is thought to react with common indoor pollutants to create a toxic mix. This toxic mix of third-hand smoke contains cancer-causing substances, posing a potential health hazard to nonsmokers who are exposed to it, especially children.Studies show that third-hand smoke clings to hair, skin, clothes, furniture, drapes, walls, bedding, carpets, dust, vehicles and other surfaces, even long after smoking has stopped. Infants, children and nonsmoking adults may be at risk of tobacco-related health problems when they inhale, ingest or touch substances containing third-hand smoke. Third-hand smoke is a relatively new concept, and researchers are still studying its possible dangers.
Third-hand smoke residue builds up on surfaces over time and resists normal cleaning. Third-hand smoke can't be eliminated by airing out rooms, opening windows, using fans or air conditioners, or confining smoking to only certain areas of a home. Third-hand smoke remains long after smoking has stopped. In contrast, second-hand smoke is the smoke and other airborne products that come from being close to burning tobacco products, such as cigarettes.
The only way to protect nonsmokers from third-hand smoke is to create a smoke-free environment, whether that's your private home or vehicle, or in public places, such as hotels and restaurants.
Article from: The Mayo Clinic
Tuesday, November 15, 2011
Had another first tonight...
I am such a planner, always have been. I am not much for surprises of any kind...good or bad. Maybe it is a control thing or maybe I just don't like the attention unexpected things bring. I am a routine type of gal. Thank God, Reed keeps me out of my rut..always in a good way:)
On the other hand, mother hood has brought about so many challenges that I never expected I could do or would have to do. Sleepless nights, nursing, diaper changes, cleaning up poop, pee, and vomit. Never with a pause or second thought.
CF, however has brought about so many things that Reed and I never imagined we would have to do. Feeding tubes, IV lines, oxygen lines, emptying and changing ostomy bags, giving shots, sterile dressing changes, grueling medication schedules, and isolating Lexi from things/people that can't or won't do what it takes to keep her healthy. All of these things have been so hard, but God has kept us strong. At the end of the day, you look back and wonder how in the world you managed. You just do what you have to do...I guess. Be smart about stuff first and let your heart and emotions always follow second.
Just when you think there can not possibly be anything new you will have to do...that day comes. Today is that day. I, for the first time, had to draw Lexi's blood. I don't know who was more nervous, me or Lexi. I don't know who was more upset as it was being done me, Reed, Lexi, or Gage.
Thank God it is over! At least until next week. Lexi has to have her blood count checked once a week while she is on these new antibiotics. Shewwww, I hope next week is easier. Prayers for us all, please.
On the other hand, mother hood has brought about so many challenges that I never expected I could do or would have to do. Sleepless nights, nursing, diaper changes, cleaning up poop, pee, and vomit. Never with a pause or second thought.
CF, however has brought about so many things that Reed and I never imagined we would have to do. Feeding tubes, IV lines, oxygen lines, emptying and changing ostomy bags, giving shots, sterile dressing changes, grueling medication schedules, and isolating Lexi from things/people that can't or won't do what it takes to keep her healthy. All of these things have been so hard, but God has kept us strong. At the end of the day, you look back and wonder how in the world you managed. You just do what you have to do...I guess. Be smart about stuff first and let your heart and emotions always follow second.
Just when you think there can not possibly be anything new you will have to do...that day comes. Today is that day. I, for the first time, had to draw Lexi's blood. I don't know who was more nervous, me or Lexi. I don't know who was more upset as it was being done me, Reed, Lexi, or Gage.
Thank God it is over! At least until next week. Lexi has to have her blood count checked once a week while she is on these new antibiotics. Shewwww, I hope next week is easier. Prayers for us all, please.
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