Friday 11 January 2013
A tool to explain CF
I stumbled across this video and thought it would be a great tool to share with Faith one day to help explain Cystic Fibrosis.
Thursday 13 December 2012
Clinic Visit December 12, 2012
It has been awhile since I have written an update. I suppose in my mind no news is good news. However, we got some good news yesterday so I thought I would share. Faith had her CF Clinic Visit yesterday. It felt weird driving to the Children's Hospital as it had been 2 months since her last visit. When we first started this journey we were going once a week so it is nice that the visits are spread out. Not to mention it means our little girl is doing great.
Faith met with her team of doctors and they were all so pleased with how much she is grown. She is a little monkey. She now weighs 16 pounds 8 ounces and is above the 75% for her age. That is amazing news and the doctors are so happy with her progress considering when she started she was in the 5th percentile for weight. We like to call her our little porker. When she met with her nutritionist Sarah, she could not believe how much food Faith was eating. While she was in the room Faith devoured two things of sweet potatoes in less than 5 minutes. We did have to up her enzymes she takes with every meal as she is not absorbing all of the nutrients and not staying satisfied. She was taking 1/2 enzyme with every feed and is now onto 1 enzyme per feed. We are hoping this will help keep her fuller longer instead of eating every hour!
In the middle of the visit we also had her RSV shots done. This was her second round of 5 shots total. Respiratory syncytial virus (RSV), which causes infection of the lungs and breathing passages, is a major cause of respiratory illness in young children. She was given the two shots at the same time in her leg. She did really well with these. Her sister Kaylee has them done as well so at least she doesn't go through it alone. After her shots were done the Doctor came in and listened to her lungs. She said they sounded wonderful and Faith looks amazing. She is very pleased with how she is doing.
While at clinic Faith gave a poop sample to test her pancreas. A stool analysis is done to see how well the pancreas is working and if pancreatic enzymes are reaching the intestine. Increased fat in the stool or low enzyme levels can mean that a person has digestive or pancreatic problems. As I understand anything under 100 is not functioning and Faith was at 104 a few months ago so it will be interesting to see the results. We also started bloodwork to get a baseline. The blood drawn tests for her CBC (complete blood cell count), red blood cells, white blood cells, liver enzymes, vitamin D, blood clotting ratio, platelets, electrolytes (sodium, potassium, chloride, etc), and antibodies. This was the first time she had blood drawn. I went back in the lab with her and not sure if I can do it again. I have never felt so helpless watching my child scream and kick and not being able to do a thing about it. After what seemed like an eternity the needle was out and I picked her up to comfort her. I asked if we were done, but the nurse said we need to make sure we have enough. As they were filling the vials I noticed they were running out of blood and then the words came we have to poke her again. I could have killed the nurse at that moment. So they poked Faith in the other arm and she was so hysterical she was hyperventilating. Both of her arms bruised instantly. They ended up taking 5 vials and as soon as this one was done I was out of there. It took awhile to calm Faith down, but eventually she did and then fell asleep. It was a rather long day, but all things considered we got wonderful news that Faith is doing great. It might not be much for some people, but to us it means the world. Until there is a cure we will strive to keep our little girl as healthy as possible. She does not go back for a few months so now she gets to just focus on being a child.
Faith met with her team of doctors and they were all so pleased with how much she is grown. She is a little monkey. She now weighs 16 pounds 8 ounces and is above the 75% for her age. That is amazing news and the doctors are so happy with her progress considering when she started she was in the 5th percentile for weight. We like to call her our little porker. When she met with her nutritionist Sarah, she could not believe how much food Faith was eating. While she was in the room Faith devoured two things of sweet potatoes in less than 5 minutes. We did have to up her enzymes she takes with every meal as she is not absorbing all of the nutrients and not staying satisfied. She was taking 1/2 enzyme with every feed and is now onto 1 enzyme per feed. We are hoping this will help keep her fuller longer instead of eating every hour!
In the middle of the visit we also had her RSV shots done. This was her second round of 5 shots total. Respiratory syncytial virus (RSV), which causes infection of the lungs and breathing passages, is a major cause of respiratory illness in young children. She was given the two shots at the same time in her leg. She did really well with these. Her sister Kaylee has them done as well so at least she doesn't go through it alone. After her shots were done the Doctor came in and listened to her lungs. She said they sounded wonderful and Faith looks amazing. She is very pleased with how she is doing.
While at clinic Faith gave a poop sample to test her pancreas. A stool analysis is done to see how well the pancreas is working and if pancreatic enzymes are reaching the intestine. Increased fat in the stool or low enzyme levels can mean that a person has digestive or pancreatic problems. As I understand anything under 100 is not functioning and Faith was at 104 a few months ago so it will be interesting to see the results. We also started bloodwork to get a baseline. The blood drawn tests for her CBC (complete blood cell count), red blood cells, white blood cells, liver enzymes, vitamin D, blood clotting ratio, platelets, electrolytes (sodium, potassium, chloride, etc), and antibodies. This was the first time she had blood drawn. I went back in the lab with her and not sure if I can do it again. I have never felt so helpless watching my child scream and kick and not being able to do a thing about it. After what seemed like an eternity the needle was out and I picked her up to comfort her. I asked if we were done, but the nurse said we need to make sure we have enough. As they were filling the vials I noticed they were running out of blood and then the words came we have to poke her again. I could have killed the nurse at that moment. So they poked Faith in the other arm and she was so hysterical she was hyperventilating. Both of her arms bruised instantly. They ended up taking 5 vials and as soon as this one was done I was out of there. It took awhile to calm Faith down, but eventually she did and then fell asleep. It was a rather long day, but all things considered we got wonderful news that Faith is doing great. It might not be much for some people, but to us it means the world. Until there is a cure we will strive to keep our little girl as healthy as possible. She does not go back for a few months so now she gets to just focus on being a child.
Thursday 18 October 2012
A Simple Prayer
Today we received a very special gift in the mail. We received two quilts that were made and given to us by our family member Jean Garvin. These quilts were taken to her church and blessed with a prayer for the girls. Brandon and I listened to the prayer tonight with tears in our eyes. We were so touched that a group of people were thinking of Faith and her Cystic Fibrosis. This gift means more to us than words could ever express. Below is a picture of the quilts and the prayer from the service. Prayer is a powerful thing. THANK YOU THANK YOU THANK YOU!!!
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| Front of Quilt |
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| Back of Quilt |
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| Front of Quilt #2 |
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| Back of Quilt #2 |
Tuesday 16 October 2012
Clinic Visit October 16 2012
Faith had her clinic visit this morning. She was going once a week and we now go every 6 weeks. Most clinic visits we are there anywhere from 2-4 hours. Clinics involve seeing her team of doctors (nurses, doctor, nutritionist, physiotherapist, respiratory doctors, gastrointestinal doctor, and a pharmacist). Sometimes she sees the whole team while others she may see less. We learned a lot in clinic today so forgive me for being all over the place in this blog.
Today we were very anxious to go to clinic as Faith has been acting different. Over the last 24 hours Faith has thrown up twice. The first time was while she was sleeping. We had to strip her sheets, change her, bathe her, etc. The other time was last night and it went everywhere (all over the couch, floor, her, you name it). She easily threw up one bottle if not more. She threw up so much and so hard that she pooped her pants as well. She has also developed a little cough, had a runny nose, been sneezing, etc. She has not slept much at all and Brandon and I have spent much of the last 24 hours trying to keep her as comfortable as possible. We are exhausted, but when we look at her and realize what she is going through we quickly get over our exhaustion. Now I know most of you may think she just has a little cold so what is the big deal. The big deal is Faith cannot fight off things as easy as other kids. She has mucus in her lungs so everything sticks. Bacteria can grow in the mucus causing infection in the lungs. We want to keep those lungs as healthy as possible to prevent long term lung damage.
Ok enough of getting side tracked. So we went to clinic this morning and explained everything that was going on with Faith. Faith even spit up 3 times while we were there (went through 3 outfits).They decided to run some tests to rule out any bacteria. They did a throat culture (same test we have as adults to test for strep throat) and she also had to be suctioned (they stick a tube down her nose that goes into the back of her throat). Both tests will be sent to the lab and we should get the results early next week. If she tests positive for Pseudomonas (the bacteria she had just over a month ago) she will be back on the TOBY treatment (see earlier blog for explanation) for 3 months. We are praying the test comes back negative. She has had her nose suctioned now three times and you would think we would be used to it by now but seeing her scream like that makes you feel awful as a parent. There are so many times when we think this isn't fair. She didn't do anything to deserve this, but then reality slaps us in the face as we know this is the hand that has been dealt so we have to make the most of it.
The positive news from today's clinic is Faith is now in the 75% percentile for length and weight. This was great news as she was not even in the tenth percentile when she started this process.
We also learned some interesting news from the social worker. In Canada Cystic Fibrosis medicine is covered until they turn 18 years old. Once they turn 18 it will be critical for us to have the best benefits as medicine is no longer covered. Without benefits medicine usually runs about $50,000 A YEAR!!!! WOW, we were shocked and at the same time so thankful it is covered for now!! We will definitely be doing some research to get the best benefits.
Now we wait to find out the results from the test. We are keeping are fingers crossed for no bacteria. Faith came home and ate before going down for a nap. We were at clinic for 4 hours today and they definitely exhaust her.
Today we were very anxious to go to clinic as Faith has been acting different. Over the last 24 hours Faith has thrown up twice. The first time was while she was sleeping. We had to strip her sheets, change her, bathe her, etc. The other time was last night and it went everywhere (all over the couch, floor, her, you name it). She easily threw up one bottle if not more. She threw up so much and so hard that she pooped her pants as well. She has also developed a little cough, had a runny nose, been sneezing, etc. She has not slept much at all and Brandon and I have spent much of the last 24 hours trying to keep her as comfortable as possible. We are exhausted, but when we look at her and realize what she is going through we quickly get over our exhaustion. Now I know most of you may think she just has a little cold so what is the big deal. The big deal is Faith cannot fight off things as easy as other kids. She has mucus in her lungs so everything sticks. Bacteria can grow in the mucus causing infection in the lungs. We want to keep those lungs as healthy as possible to prevent long term lung damage.
Ok enough of getting side tracked. So we went to clinic this morning and explained everything that was going on with Faith. Faith even spit up 3 times while we were there (went through 3 outfits).They decided to run some tests to rule out any bacteria. They did a throat culture (same test we have as adults to test for strep throat) and she also had to be suctioned (they stick a tube down her nose that goes into the back of her throat). Both tests will be sent to the lab and we should get the results early next week. If she tests positive for Pseudomonas (the bacteria she had just over a month ago) she will be back on the TOBY treatment (see earlier blog for explanation) for 3 months. We are praying the test comes back negative. She has had her nose suctioned now three times and you would think we would be used to it by now but seeing her scream like that makes you feel awful as a parent. There are so many times when we think this isn't fair. She didn't do anything to deserve this, but then reality slaps us in the face as we know this is the hand that has been dealt so we have to make the most of it.
The positive news from today's clinic is Faith is now in the 75% percentile for length and weight. This was great news as she was not even in the tenth percentile when she started this process.
We also learned some interesting news from the social worker. In Canada Cystic Fibrosis medicine is covered until they turn 18 years old. Once they turn 18 it will be critical for us to have the best benefits as medicine is no longer covered. Without benefits medicine usually runs about $50,000 A YEAR!!!! WOW, we were shocked and at the same time so thankful it is covered for now!! We will definitely be doing some research to get the best benefits.
Now we wait to find out the results from the test. We are keeping are fingers crossed for no bacteria. Faith came home and ate before going down for a nap. We were at clinic for 4 hours today and they definitely exhaust her.
Saturday 13 October 2012
Thursday 4 October 2012
Beads of Courage
On September 11, 2012 Faith went in for her regular clinic visit. At this visit a lady came into the room and told us that the Alberta Children Hospital had started a new program called Beads of Courage and the Cystic Fibrosis Clinic was the first patients to get to try it out. She was given a necklace with her name and a few beads with a journal as well that read the following:
BEad you... because nothing can change who you are. No matter what happens, no matter how your body changes as you go through your treatment, YOU will always be YOU. Like your parents, brothers, sisters, friends, nurses, child life specialists, and doctors, Beads of Courage will be here to help you through. You have courage.. BEad YOU!! As your Beads of Courage Collection grows, it will be something you can use to remember and re-tell your unique story of courage. Your story isn't just about what it happening to you, it is about how you are taking control of a tough situation.
This program is designed to help remember Faiths journey with Cystic Fibrosis.
Below is a background on the beads of courage program for those who have not heard about it. If you want to learn more you can go to the website www.beadsofcourage.org We are so excited to have these boards and think it is a neat idea to track her journey.
Our Mission
Caring for children coping with serious illness, their families and clinicians by helping them to RECORD, TELL and OWN their story of COURAGE through beads.
Our Values
Advance the science of caring; Set and exceed the standards for the psychosocial care of children coping with serious illness; Be a source of support and encouragement-connecting the kindness of others with the Courage of the children we support!
Our History
Jean Baruch, developed the first Beads of Courage, Inc. program while working on her PhD in Nursing at the University of Arizona, College of Nursing. Her inspiration came from her clinical practice and from her experiences as a camp nurse at one of Paul Newman's Hole in the Wall Gang Camps. With the financial support of her family and friends, Jean developed and piloted the Beads of Courage Program at Phoenix Children's Hospital in February 2004.
Today, Beads of Courage, Inc. is providing the Beads of Courage® program in over 140 children’s hospitals throughout the United States, Japan, New Zealand, United Kingdom and Canada. The Beads of Courage® Program has become the standard of care for supporting children and their families during their treatment for cancer and other serious illness. With the encouragement of families, supporters, bead artist community and others, Beads of Courage CANADA was incorporated in 2011 and launched its first program in January 2012. Beads of Courage CANADA was launched with the support and leadership of Executive Director, Victoria Plouffe and the Board of Directors.
BEad you... because nothing can change who you are. No matter what happens, no matter how your body changes as you go through your treatment, YOU will always be YOU. Like your parents, brothers, sisters, friends, nurses, child life specialists, and doctors, Beads of Courage will be here to help you through. You have courage.. BEad YOU!! As your Beads of Courage Collection grows, it will be something you can use to remember and re-tell your unique story of courage. Your story isn't just about what it happening to you, it is about how you are taking control of a tough situation.
This program is designed to help remember Faiths journey with Cystic Fibrosis.
Below is a background on the beads of courage program for those who have not heard about it. If you want to learn more you can go to the website www.beadsofcourage.org We are so excited to have these boards and think it is a neat idea to track her journey.
Our Mission
Caring for children coping with serious illness, their families and clinicians by helping them to RECORD, TELL and OWN their story of COURAGE through beads.
Our Values
Advance the science of caring; Set and exceed the standards for the psychosocial care of children coping with serious illness; Be a source of support and encouragement-connecting the kindness of others with the Courage of the children we support!
Our History
Jean Baruch, developed the first Beads of Courage, Inc. program while working on her PhD in Nursing at the University of Arizona, College of Nursing. Her inspiration came from her clinical practice and from her experiences as a camp nurse at one of Paul Newman's Hole in the Wall Gang Camps. With the financial support of her family and friends, Jean developed and piloted the Beads of Courage Program at Phoenix Children's Hospital in February 2004.
Today, Beads of Courage, Inc. is providing the Beads of Courage® program in over 140 children’s hospitals throughout the United States, Japan, New Zealand, United Kingdom and Canada. The Beads of Courage® Program has become the standard of care for supporting children and their families during their treatment for cancer and other serious illness. With the encouragement of families, supporters, bead artist community and others, Beads of Courage CANADA was incorporated in 2011 and launched its first program in January 2012. Beads of Courage CANADA was launched with the support and leadership of Executive Director, Victoria Plouffe and the Board of Directors.
Beads of Courage Necklace
Toby and the Bacteria
Back in August Faith was having a lot of snot and boogers. It didn't matter how many times I cleaned her nose out she was sounding congested. I never knew someone could have so many boogers. Just to be safe I called her nurses Melissa and Lori to inform them of what was going on and ask them for advice. They asked us to bring her in just to be safe.
On August 1st, 2012 we brought Faith into the CF clinic. They decided to suction her again as she sounded congested. So once again they stuck a tube into her nose that went down the back of her throat. I decided to not watch again and was expecting her to scream. However, she just sat there and took it like a champ. I was so proud of my little girl. They sent the swab to the lab to be tested and we went home to wait for the results. A few days passed and Faith sounded way better so we assumed that the results would come back normal. However, we received a call about a week later that the results had come back and Faith had two strands of bacteria. In order to treat these strands she would need to be put on antibiotics. One of the medicines she had to take required a nebulizer. We had to go pick up the nebulizer from a place called Vital Air in Calgary. The options was to rent it for $40 a month or buy it for $120. They recommended we buy the machine as we would be using it for another medications in the future.
The next day we went and bought the machine and went to the hospital to get her medications and learn how to do the treatment. Upon arrival they told us the two strands of bacteria they found were Pseudomonas and Staphylococcus. If she had just had the Staphylococcus they would not have put her on any antibiotics, but due to the Pseudomonas they were going to treat both. So she took two antibiotics (Novo-Lexin for two weeks three times a day and Tobramycin for a month twice a day). The one was just a oral medication we put directly into her bottle. Tobramycin was a medicine that was put into the nebulizer and vaporized which she inhaled through an oxygen mask. The treatment took 20 minutes. We named the treatment TOBI and told Faith she was getting a mini facial. The first time we put an oxygen mask on her little face she screamed her head off and we had to restrain her. We tried to sing songs, hold her hands, etc but nothing worked. It was the longest twenty mins of our lives. Afterwards I remember leaving the room and balling my eyes out. You never want to see your child in pain. So we decided to wait until she was asleep to do the treatment as she was not aware of what was going on. For the most part it worked although we did have a few occasions where she woke up in the middle of treatment and screamed. Needless to say when the month was over I was happy. We took Faith back to the hospital and had her tested to see if the bacteria was gone. This time they did an oral swab and went down the back of her throat. She sat there like a champ and did not even cry. Our little girl is beyond tough and inspires me everyday with the stuff she goes through. A week later we got a call from the clinic to let us know all the bacteria was gone and the medicine had worked. We did a celebration dance with Faith. I am sure she had no idea what we were doing but she had a big smile on her face. There will always be a risks with Faith catching bacteria (hence why we are so anal about germs) but for now she is bacteria free.
On August 1st, 2012 we brought Faith into the CF clinic. They decided to suction her again as she sounded congested. So once again they stuck a tube into her nose that went down the back of her throat. I decided to not watch again and was expecting her to scream. However, she just sat there and took it like a champ. I was so proud of my little girl. They sent the swab to the lab to be tested and we went home to wait for the results. A few days passed and Faith sounded way better so we assumed that the results would come back normal. However, we received a call about a week later that the results had come back and Faith had two strands of bacteria. In order to treat these strands she would need to be put on antibiotics. One of the medicines she had to take required a nebulizer. We had to go pick up the nebulizer from a place called Vital Air in Calgary. The options was to rent it for $40 a month or buy it for $120. They recommended we buy the machine as we would be using it for another medications in the future.
The next day we went and bought the machine and went to the hospital to get her medications and learn how to do the treatment. Upon arrival they told us the two strands of bacteria they found were Pseudomonas and Staphylococcus. If she had just had the Staphylococcus they would not have put her on any antibiotics, but due to the Pseudomonas they were going to treat both. So she took two antibiotics (Novo-Lexin for two weeks three times a day and Tobramycin for a month twice a day). The one was just a oral medication we put directly into her bottle. Tobramycin was a medicine that was put into the nebulizer and vaporized which she inhaled through an oxygen mask. The treatment took 20 minutes. We named the treatment TOBI and told Faith she was getting a mini facial. The first time we put an oxygen mask on her little face she screamed her head off and we had to restrain her. We tried to sing songs, hold her hands, etc but nothing worked. It was the longest twenty mins of our lives. Afterwards I remember leaving the room and balling my eyes out. You never want to see your child in pain. So we decided to wait until she was asleep to do the treatment as she was not aware of what was going on. For the most part it worked although we did have a few occasions where she woke up in the middle of treatment and screamed. Needless to say when the month was over I was happy. We took Faith back to the hospital and had her tested to see if the bacteria was gone. This time they did an oral swab and went down the back of her throat. She sat there like a champ and did not even cry. Our little girl is beyond tough and inspires me everyday with the stuff she goes through. A week later we got a call from the clinic to let us know all the bacteria was gone and the medicine had worked. We did a celebration dance with Faith. I am sure she had no idea what we were doing but she had a big smile on her face. There will always be a risks with Faith catching bacteria (hence why we are so anal about germs) but for now she is bacteria free.
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| Faith during her treatment |
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