I am moving to a new blog location. Ashley and I will be blogging together now at www.cfparents.com
We are doing this to hopefully be able to keep the blog more current and to let you hear from both of us. Also, as we prepare for Great Strides this year we wanted to advertise our website on our bracelets and T shirts.
We hope you will make the transition with us and follow us at our new location.
Have a great day.
Saturday, February 26, 2011
Thursday, December 23, 2010
Thankful Thursday 12/23/2010
Weare thankful to be GOING HOME from the hospital. I will post about the hospital stay later.
We are thankful for our family and friends that always check on us and help us every time we are in the hospital so Ashley and I can go to work.
We are thankful for the doctors, respiratory therapist, good nurses, other hospital staff, and even the bad nurses they all have contributed to Gabriell getting better.
We are thankful for CF Research and treatments. We are going home with a "new-for-us" treatment Hypertonic Saline. I will post more about this later.
We are thankful for our family and friends that always check on us and help us every time we are in the hospital so Ashley and I can go to work.
We are thankful for the doctors, respiratory therapist, good nurses, other hospital staff, and even the bad nurses they all have contributed to Gabriell getting better.
We are thankful for CF Research and treatments. We are going home with a "new-for-us" treatment Hypertonic Saline. I will post more about this later.
Sunday, December 5, 2010
Monday, November 8, 2010
Less Than A Month
It has been less than a month since Gabrielle finished her last round of Augmentin and she has been placed on another antibiotic. This time we are trying Bactrim. Both the bacteria that she has cultured in the past are susceptible to the Bactrim. Hopefully, if she has other bacteria that she has not cultured it will also be susceptible to the Bactrim. She will be on this antibiotic for 14 days. If it does not work or if she gets sick again within a short period of time it most likely means another hospital stay.
In addition to the Bactrim we are also increasing her respiratory therapy. We will be doing her chest percussions 3-4 times per day for 20 minutes each time. She will also get Albuteral prior to the chest percussions each time. She will also receive an extra nebulizer of Pulmozyme each day.
While at the clinic today Gabrielle was weighed and measured. She is currently 32.25 inches tall which is in the 38th percentile. She weighs 29 lbs 2 oz which is in the 89th percentile. We are praising God that her height and weigh are extremely good!!!
For those interested here is her daily schedule while she is sick this time.
4:30 am - End Night Feed w/Creon 6
5:00 am - Albuteral & Chest Percussions
5:25 am - Pulmozyme
5:40 am - Prevacid, Zantac, Zyrtec, Bactrim, Flonase
9:00 am - Breakfast w/Creon 6 (12:00pm Weekdays w/Viokase 8)
9:30 am - Albuteral & Chest Percussions (Skip on Weekdays)
2:00 pm - Lunch w/Creon 6 (4:15pm Weekdays)
4:30 pm - Albuteral & Chest Percussions
6:20 pm - Prevacid, Zantac, Bactrim, Flonase, AquaDek Vitamins
6:30 pm - Supper w/Creon 6
8:20 pm - Albuteral & Chest Percussions
8:45 pm - Pulmozyme
9:00 pm - Begin Night Feeding w/Creon 6
In addition to the Bactrim we are also increasing her respiratory therapy. We will be doing her chest percussions 3-4 times per day for 20 minutes each time. She will also get Albuteral prior to the chest percussions each time. She will also receive an extra nebulizer of Pulmozyme each day.
While at the clinic today Gabrielle was weighed and measured. She is currently 32.25 inches tall which is in the 38th percentile. She weighs 29 lbs 2 oz which is in the 89th percentile. We are praising God that her height and weigh are extremely good!!!
For those interested here is her daily schedule while she is sick this time.
4:30 am - End Night Feed w/Creon 6
5:00 am - Albuteral & Chest Percussions
5:25 am - Pulmozyme
5:40 am - Prevacid, Zantac, Zyrtec, Bactrim, Flonase
9:00 am - Breakfast w/Creon 6 (12:00pm Weekdays w/Viokase 8)
9:30 am - Albuteral & Chest Percussions (Skip on Weekdays)
2:00 pm - Lunch w/Creon 6 (4:15pm Weekdays)
4:30 pm - Albuteral & Chest Percussions
6:20 pm - Prevacid, Zantac, Bactrim, Flonase, AquaDek Vitamins
6:30 pm - Supper w/Creon 6
8:20 pm - Albuteral & Chest Percussions
8:45 pm - Pulmozyme
9:00 pm - Begin Night Feeding w/Creon 6
Tuesday, October 12, 2010
10/12/10 - Medical Update
There has not been much to blog about for the past few months. Gabrielle has gained weight and stayed healthy since she was discharged from the hospital back in May. However, she did get sick a little over two weeks ago. We went to the CF Clinic and she was placed on Augmentin and Zyrtec. These drugs have cleared up her respiratory and allergy issues but the Augmentin has created some issues of its own.
We took Gabrielle back to the CF Clinic today due to her not being able to hold all her feedings down and her having watery bowel movements. Both of these can be a result of the Augmentin suppressing the good bacteria in her digestive system and allowing the bad bacteria to thrive. We took some stool samples to the clinic so they can be tested. In the mean time we are treating her as if she has C. Diff. she had this back during her last hospital stay.
While at the hospital we also stopped by the Surgery Clinic and had her MicKey Button replaced. We have to return in three months to have it replaced again. But during this visit the nurse will watch me replace it and then from that time on I will be replacing her MicKey Button at home every three months.
We also meet with Gabrielle's Nutritionist today because we are running out of the pancreatic enzymes she has been taking and have to switch to one that is now FDA approved. Our hopes that the enzyme she had been taking would gain FDA approval prior to us running out did not come true. We are switching to Creon and hope that it will work for her. We are trying the Creon first since we still have to give the enzymes through her feeding tube. Of the FDA approved enzymes Creon has the smallest micro-spheres, or beads.
We took Gabrielle back to the CF Clinic today due to her not being able to hold all her feedings down and her having watery bowel movements. Both of these can be a result of the Augmentin suppressing the good bacteria in her digestive system and allowing the bad bacteria to thrive. We took some stool samples to the clinic so they can be tested. In the mean time we are treating her as if she has C. Diff. she had this back during her last hospital stay.
While at the hospital we also stopped by the Surgery Clinic and had her MicKey Button replaced. We have to return in three months to have it replaced again. But during this visit the nurse will watch me replace it and then from that time on I will be replacing her MicKey Button at home every three months.
We also meet with Gabrielle's Nutritionist today because we are running out of the pancreatic enzymes she has been taking and have to switch to one that is now FDA approved. Our hopes that the enzyme she had been taking would gain FDA approval prior to us running out did not come true. We are switching to Creon and hope that it will work for her. We are trying the Creon first since we still have to give the enzymes through her feeding tube. Of the FDA approved enzymes Creon has the smallest micro-spheres, or beads.
Thursday, August 12, 2010
Part 2 - Introduction to Cystic Fibrosis
Our first visit at the fertility clinic on December 5, 2007 was an information gathering session. We provided the doctor with our history and he provided us with a general plan. As part of this session the fertility clinic promotes being screened to see if you are a carrier for Cystic Fibrosis. They said, "your insurance will pay for it." Little did we know that those 6 words would change our lives. We had no clue what CF was and didn't have a known history of CF in either of our families. Ashley was having blood drawn that day for other test to be run, so why not go ahead and have the CF carrier screening done also. Hey, "insurance will pay for it." I don't mind being stuck with needles, so since "insurance will pay for it" why not have the test run. Well it turned out that insurance paid for Ashley's test since she had met her deductible for the year, but we had to pay for my testing since I rarely go to the doctor and had not met my deductible. We had the blood drawn and the test run and did not thing anything else about it since don't have a family history of this genetic disease.
By the end of the session at the fertility clinic we had decided on a starting point for our treatment. Ashley began a new medication that would require her to return to the clinic for an ultrasound to check her ovaries. The follow-up visit was scheduled and we went home focused on this new treatment plan.
Ashley returned to the fertility clinic on December 12, 2007 for the ultrasound to check her ovaries. I did not join her on this visit since it was a routine visit and our doctor would not even be in the office that day. Ashley received the exciting news that everything was like it should be and it was time to try and conceive. A few moments later another doctor in the practice came to talk with Ashely, they had received the results of our CF Carrier Screening.
Both Ashley and I had tested positive for being a CF Carrier. Ashley has the G85E mutation and I have the delta F508 mutation. The doctor went on and advised Ashley not to attempt to get pregnant at this time. She also told Ashley that if we wanted to have a baby we needed to proceed with In Vitro Fertilization (IVF) with Preimplantation Genetic Diagnosis (PGD). Ashley was scared and and I was furious at the doctor. This doctor not being our primary doctor should have never started talking with Ashley about the IVF with PGD. After this it was decided that I would be at every doctor's visit no matter how minor the visit was suppose to be.
Ashley and I were now presented with another obstacle on our road to having a family with children. We had a lot of research, talking, and most importantly Praying to do over the next few months.
By the end of the session at the fertility clinic we had decided on a starting point for our treatment. Ashley began a new medication that would require her to return to the clinic for an ultrasound to check her ovaries. The follow-up visit was scheduled and we went home focused on this new treatment plan.
Ashley returned to the fertility clinic on December 12, 2007 for the ultrasound to check her ovaries. I did not join her on this visit since it was a routine visit and our doctor would not even be in the office that day. Ashley received the exciting news that everything was like it should be and it was time to try and conceive. A few moments later another doctor in the practice came to talk with Ashely, they had received the results of our CF Carrier Screening.
Both Ashley and I had tested positive for being a CF Carrier. Ashley has the G85E mutation and I have the delta F508 mutation. The doctor went on and advised Ashley not to attempt to get pregnant at this time. She also told Ashley that if we wanted to have a baby we needed to proceed with In Vitro Fertilization (IVF) with Preimplantation Genetic Diagnosis (PGD). Ashley was scared and and I was furious at the doctor. This doctor not being our primary doctor should have never started talking with Ashley about the IVF with PGD. After this it was decided that I would be at every doctor's visit no matter how minor the visit was suppose to be.
Ashley and I were now presented with another obstacle on our road to having a family with children. We had a lot of research, talking, and most importantly Praying to do over the next few months.
Saturday, July 24, 2010
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