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.
Thursday, December 23, 2010
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
Thursday, July 22, 2010
Fluid Spewing
One of the hardest things that Ashley and I are having trouble with is regulating Gabrielle's body temperature this summer. On Wednesday nights our church, Providence Baptist Fellowship, meets outside at a park. We have dinner and a devotion. There are also activities for the children and students. During this time Gabrielle also received her dinner bolus feed through her G-tube.
Was this embarrassing? Not really, it was more frustrating. Ashley and I have come to the point that we accept thing for what they are and the fluid spewing is just part of it. With CF Gabrielle is more intolerant to heat and will dehydrate easier.
Later.
Later.
Wednesday, July 21, 2010
Pediatrician Visit
Gabrielle was not feeling well on Monday, July 21st, and was unable to keep her lunch feeding down. She also had a slight fever return. Ashley called the pediatrician's office and we were scheduled go into the office on Tuesday, July 20th.
Gabrielle was acting fine on Tuesday but did register a slight fever, 100.5 when we checked into the pediatrician's office. After talking with the doctor it was determined that this was a continuation of the issues that began last Tuesday. We were instructed to continue to watch Gabrielle closely and to call if the fever returned or if she could not keep her feedings down.
Fun Times.
Gabrielle was acting fine on Tuesday but did register a slight fever, 100.5 when we checked into the pediatrician's office. After talking with the doctor it was determined that this was a continuation of the issues that began last Tuesday. We were instructed to continue to watch Gabrielle closely and to call if the fever returned or if she could not keep her feedings down.
Fun Times.
Thursday, July 15, 2010
THE DAY 07/14/10
Rewind to July 13th at 5pm, Ashley and Gabrielle wake up from a nap and Gabrielle is running a fever of 102.8. We allow her to skip her dinner feeding, go ahead with her continuous night feeding. At 2:30am she wakes up attempting to throw-up so we turn off her night feed, vent her, and take her temperature again and it was still hoovering around the same. We decided to forgo the rest of her night feed and let her come finish the night with us in our bed. We had to get up around 6:30 so we could get ready for Gabrielle's monthly CF Clinic appointment. By this time her fever had reduced to 101.6 and she was acting like her normal self.
We were thankful that Gabrielle had her monthly CF Clinic appointment already scheduled for 8am on July 14th. This saved us the frustration of calling the clinic. By the time we arrived a the clinic Gabriellle's fever had reduced below 101.0. The Clinic did not seem concerned about her illness other than saying it was not related to her CF. Finally an illness not related to CF!!!
We were thankful that Gabrielle had her monthly CF Clinic appointment already scheduled for 8am on July 14th. This saved us the frustration of calling the clinic. By the time we arrived a the clinic Gabriellle's fever had reduced below 101.0. The Clinic did not seem concerned about her illness other than saying it was not related to her CF. Finally an illness not related to CF!!!
The clinic visit went great. Gabrielle's weight was up to the 67th percentile, length was up to the 61st percentile, and weight for length was up to the 77th percentile. This is the best stats she has ever had.
During the visit we talked about Gabrielle's MicKey button and it was decided it needed to be changed. Halfway through our clinic visit we left and went to the surgery office to get a new MicKey. The nurse decided we could increase the size and decrease the length. Gabrielle went from a 14Fr 2.0cm to a 16Fr 1.7cm MicKey button. While this was uncomfortable for Gabrielle it made Ashley and I happy since it will be easier to give her enzymes through her MicKey.
After the MicKey button was replaced we returned to the CF Clinic to finish our visit. It was decided the only change we would make this month would be an increase in her enzymes prior to her bolus feeds during the day. Gabrielle had blood drawn for her yearly blood work.
Ashley took Gabrielle home and I returned to work. Ashley and Gabrielle also stayed home from church that night. On my way home from church, around 7:30pm, Ashley called me because Gabrielle had thrown up her dinner feed and her fever had returned to 103.0. Ashley called the on-call pulmonary doctor and we were advised to head to the ER to rule out an urinary tract infection.
The ER Staff and VCH were wonderful. Once we told them Gabrielle had CF the kept us isolated from the General Population and moved us to a room as quickly as possible. By this time Gabrielle's fever had spiked up to 104.0. The ER doctor concurred with the pulmonary doctor that we needed to rule out a urinary tract infection. So the wait began for the orders to be entered and the nurses to come and catheterize Gabrielle to get a urine sample. After over an hours wait the nurses finally can to catheterize her only to find out that they could not. That meant we had to wait for Gabrielle to urinate on her own, which she had already done during the first hour long wait. The nurses attached a collection bag to Gabrielle around 10:15pm and the wait began. After about 30 min Ashely and I decided to start giving Gabrielle some pedialyte through her G-tube. We did this every 20-30 minutes until Gabrielle urinated. Gabrielle finally urinate around 11:15 pm. The test were run and showed no signs of a urinary tract infection. We were discharged and returned home around 1:00am.
What an exciting day!!!
Friday, July 2, 2010
Part 1 - The Beginnings
After being married for a little over two years, Ashley and I decided it was time to start our family in the spring of 2006. Within a few months God had blessed us with a pregnancy. We were so excited just as any other couple would be. A doctor's visit was scheduled for August 7, 2006 to confirm the pregnancy and we started making plans on how to tell the new grandparents. The doctor's visit went great and the pregnancy was confirmed. We stopped by the store that night and purchase stuffed monkeys and other baby stuff to give to the new grandparents. For my parents the plan was to give them the items as part of their anniversary gift. The rest of my family would be with us also. We were going to St. Augustine, Florida for my sisters graduation as a physical therapist. Ashley's parents would receive a small gift from us when we got home from St. Augustine. They would have just thought we got them a souvenir from our trip. That night we lost the pregnancy.
A second trip to the doctor's office the next day confirmed this. Instead of telling the new grandparents the exciting news, we were telling our parents about the loss. This was a time of great sadness for us, however God used this time to draw Ashley and I closer together and closer to Himself.
Over the next couple years Ashley and I continued to try and conceive. During this time we began to learn how to depend on God for His direction and timing for our family. If it were not for the prayers, support, examples, and accountability of our family and friends we may not of begun to learn how to depend on God for everything in our lives. This time period of learning to lean on God has proven extremely beneficial to us.
After almost 2 years of trying to conceive Ashley and I were referred to a fertility clinic. Our first appointment was on December 5, 2007.
A second trip to the doctor's office the next day confirmed this. Instead of telling the new grandparents the exciting news, we were telling our parents about the loss. This was a time of great sadness for us, however God used this time to draw Ashley and I closer together and closer to Himself.
Over the next couple years Ashley and I continued to try and conceive. During this time we began to learn how to depend on God for His direction and timing for our family. If it were not for the prayers, support, examples, and accountability of our family and friends we may not of begun to learn how to depend on God for everything in our lives. This time period of learning to lean on God has proven extremely beneficial to us.
After almost 2 years of trying to conceive Ashley and I were referred to a fertility clinic. Our first appointment was on December 5, 2007.
Saturday, June 12, 2010
Fix-It Guy
A couple months ago I received an email from one of my friends that really made me think, it actually brought tears to my eye as I was responding. I want to share part of the email and my response.
My friend writes, "I know that one of the things that gets to me the most is knowing I am supposed to be the fix it guy, the protector of my family. And yet when it comes to this, knowing I wouldn't be able to fix any part of this, or feel like I was helpless to protect my children would be the thing that would break my spirit for good."
One of the hardest things that I have had to accept is that there is not a onetime fix for cystic fibrosis. There is nothing I can do that will allow Gabrielle to stop all, or any of, her treatments. However, this is where having a different perspective comes into play. The "fixes" for CF are drugs and therapy and more drugs and more therapy. And we cannot for get about food, nutrition is a key part also. The fix is something that we have to work at consistently every day. I never imagined that my child would refuse food, be a druggie, and have to be "beat" at least twice a day.
One great thing that I have found is that when dealing with a chronic disease you have a different perspective. Your attitude and the way you look at things have to be different from those that don't deal with them. As hard as it is to do you have to accept everything about the disease as normal. Normal for us has to be constant change, constant challenges, constant treatments, and most importantly constant prayer. We have had to learn that we cannot do everything on our own and we have to accept the loving support from our friends and family.
Gabrielle is who she is because of the CF and I would not change that for anything.
My friend writes, "I know that one of the things that gets to me the most is knowing I am supposed to be the fix it guy, the protector of my family. And yet when it comes to this, knowing I wouldn't be able to fix any part of this, or feel like I was helpless to protect my children would be the thing that would break my spirit for good."
One of the hardest things that I have had to accept is that there is not a onetime fix for cystic fibrosis. There is nothing I can do that will allow Gabrielle to stop all, or any of, her treatments. However, this is where having a different perspective comes into play. The "fixes" for CF are drugs and therapy and more drugs and more therapy. And we cannot for get about food, nutrition is a key part also. The fix is something that we have to work at consistently every day. I never imagined that my child would refuse food, be a druggie, and have to be "beat" at least twice a day.
One great thing that I have found is that when dealing with a chronic disease you have a different perspective. Your attitude and the way you look at things have to be different from those that don't deal with them. As hard as it is to do you have to accept everything about the disease as normal. Normal for us has to be constant change, constant challenges, constant treatments, and most importantly constant prayer. We have had to learn that we cannot do everything on our own and we have to accept the loving support from our friends and family.
Gabrielle is who she is because of the CF and I would not change that for anything.
Friday, May 14, 2010
New Routine
Gabrielle was release from the hospital back on May 4th, she was admitted back on April 20th. This time Gabrielle came home with her G-Tube which meant that we would be soon establishing a new daily routine. We also came home without a feeding pump and supplies from the home healthcare company. Those were ordered to be shipped overnight delivery, however it took 3 days to recieve everything we needed to begin Gabrielle's overnight feedings.
We have now been hooking Gabrielle up to her feeding pump at night time for one week, and what an interesting week it has been. Gabrielle is suppose to have 12oz of formula during the day and 12oz of formula during the night. It has bee difficult to get the 12oz during the day because she does not want to drink it all and we are not going to have the babysitter put it through her G-Tube. So we have ended up having to feed her 6 to 8oz between 4pm and 9pm each night and then hook her up to the feeding pump at 9pm. We are hoping that over time Gabrielle will learn to drink more during the day while with the babysitter. The the feeding pump is not calibrated corretly and the home healthcare company has not called me back yet. So Gabrielle is being give more formula in a shorter amount of time than she is suppose to be getting. This makes her feel full and miserable.
Anyways, now that we have time constrains on when we have to feed Gabrielle we finally have to become "those parents" that have to have a strict schedule that impacts our ability to do things at night. We now have to leave places early so we can get home to put Gabrielle to bed.
More later!
We have now been hooking Gabrielle up to her feeding pump at night time for one week, and what an interesting week it has been. Gabrielle is suppose to have 12oz of formula during the day and 12oz of formula during the night. It has bee difficult to get the 12oz during the day because she does not want to drink it all and we are not going to have the babysitter put it through her G-Tube. So we have ended up having to feed her 6 to 8oz between 4pm and 9pm each night and then hook her up to the feeding pump at 9pm. We are hoping that over time Gabrielle will learn to drink more during the day while with the babysitter. The the feeding pump is not calibrated corretly and the home healthcare company has not called me back yet. So Gabrielle is being give more formula in a shorter amount of time than she is suppose to be getting. This makes her feel full and miserable.
Anyways, now that we have time constrains on when we have to feed Gabrielle we finally have to become "those parents" that have to have a strict schedule that impacts our ability to do things at night. We now have to leave places early so we can get home to put Gabrielle to bed.
More later!
Monday, April 26, 2010
Door Signs
The "Door Signs" say it all.
Gabrielle has been in the hospital since last Tuesday and we have accumulated some door signs reminding the doctors, nurses, and care partners of precautions they have to use around Gabrielle. We have the standard "Contact Precautions" sign that is in place to protect Gabrielle from and germs the doctors, nursed, and care partners may be carrying around from other patients. We have the "Epidural Precautions" sign to reminded everyone to be careful with Gabrielle's epidural. And last night we added the "Attention: For this patient wash hands with SOAP & WATER ONLY" sign. This sign is to protect the doctors, nurses, care partners, and everyone else from an intestinal bacteria that Gabrielle has picked up because of being on antibiotics and being in the hospital.
We have learned a lot of stuff in these last 6 days and still have more to learn. As I get time I will expand on everything we have learned and talk about our experience from this and previous hospital visits.
Wednesday, April 21, 2010
Introduction
I am sitting at work, on my lunch break, wishing I was at the hospital with Gabrielle. Today is the the last day before her surgery to place a G-Tube (feeding tube) and the Nissen surgery for reflux.
Let me take a few steps back and introduce myself. Hi! My name is Jeff. (Some people think I say Joe, I guess they sound the similar when I say my name.) I have a beautiful wife, Ashley, and a beautiful daughter, Gabrielle. I hope through this blog you get to know my family as we grow.
In addition to getting to know us, I hope this blog will also serve as an educational tool to learn more about Cystic Fibrosis and how it is affecting our family. But most importantly, I desire to to show that you can give God glory even in challenging times.
Let me take a few steps back and introduce myself. Hi! My name is Jeff. (Some people think I say Joe, I guess they sound the similar when I say my name.) I have a beautiful wife, Ashley, and a beautiful daughter, Gabrielle. I hope through this blog you get to know my family as we grow.
In addition to getting to know us, I hope this blog will also serve as an educational tool to learn more about Cystic Fibrosis and how it is affecting our family. But most importantly, I desire to to show that you can give God glory even in challenging times.
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