On Wednesday, June 23rd, Gabrielle started feeding therapy. Her first goal is to begin to eat something that she can take her enzymes with such as pear sauce, apple sauce, grape jelly or ketchup. She did good for the therapist and put some food in her mouth. The favorite thing she ate was the cheese dip that Jeff stopped and picked up for her.
She will be going to therapy once a week for 1 hour. We are hoping that she will begin eating by mouth within the next 2-3 months.
Saturday, June 26, 2010
Thursday, June 17, 2010
GOAL MET!!!!
Gabrielle had her monthly visit to the CF Clinic and GI Doctor yesterday (June 16, 2010). She weighted 10.4 kg (22 lbs 15 oz) and was 78cm (30.75 in) long. This places her in the 43% weight for age, 45% length for age, and 62% weight for length. This is her best stats since she was born. Needless to stay the doctors and dietian were amazed at how well she has improved over the last month and told us that Gabrielle has met her goal.
Wednesday, May 5, 2010
May 5, 2010
Gabrielle was able to come home from the hospital yesterday evening. She had to stay for one last dose of antibiotic and the earliest they could give it to her was 3:01pm yesterday. She has not had to take any pain medication for about a week now and her incision from the Nissen is healing nicely and does not seem like it will leave a scar. Her G-Tube is doing good also. We are still learning how to feed her without over filling her, but almost have that figured out.
Because of the flooding we were not able to get the feeding pump and supplies to feed her continuously at night time. They were suppose to ship everything overnight yesterday but we only received the feeding pump today. The home healthcare said they can get in there office tomorrow to get us the formula and supplies. If everything works out we will be able to start the continuous night feeds Thursday night.
Gabrielle stopped taking the formula with her sippy cup while we were in the hospital so all her feedings were given through her G-Tube. Even by doing this she gain a little over 1 pound which put her back in the 25 percentile while in the hospital. Today we used a different brand of sippy cup and she would take about 2 oz of her formula with the sippy cup at each feeding so we only had to give her the other 2 oz through the G-Tube.
The feeding goals we have for the next 2 weeks are: 3 – 4oz formula feedings during the day, 1 jar of stage 1 baby food (single ingredient), 1.5oz formula per hour for 8 hours during the night. Whatever formula she does not take by sippy cup during the day has to be given to her through the G-Tube.
Her daily medications now include:
Viokase enzymes (mixed in formula)
Ultrase enzymes (reintroducing)
Zantac (2x daily)
Prevacid (2x daily)
Aquadeks Vitamins (1x daily)
Pulmozyme (1x daily)
Albuteral (as needed)
Gabrielle is still on an antibiotic for the C. Diff (4x daily) and Flonase (2x daily) for a cold/allergies. She also has 10 minutes of chest percussions for airway clearance (3x daily).
Over the next few weeks we have 5 doctors appointments already scheduled. We start with a feeding evaluation that will help us to teach Gabrielle to eat again. Then Gabrielle has her 15 month check-up, a visit the CF Clinic and GI Doctor. Toward the end of the month Gabrielle will visit the surgeon where her current G-Tube will be replaced with a Mic-key button.
On May 15th, Gabrielle along with Ashley and I and her Grandparents will be participating in the Great Strides Walk at the Nashville Zoo. GREAT STRIDES is the Cystic Fibrosis (CF) Foundation's largest and most successful national fundraising event. We would like to invite you to walk with us and/or donate to the CF Foundation.
Jeff’s Great Strides Donation Link - http://www.cff.org/Great_Strides/JeffreyShaver
Ashley’s Great Strides Donation Link - http://www.cff.org/great_strides/AshleyShaver6704
Thanks for pray for Gabrielle and us!!!
In Christ,
Jeff, Ashley, and Gabrielle
Because of the flooding we were not able to get the feeding pump and supplies to feed her continuously at night time. They were suppose to ship everything overnight yesterday but we only received the feeding pump today. The home healthcare said they can get in there office tomorrow to get us the formula and supplies. If everything works out we will be able to start the continuous night feeds Thursday night.
Gabrielle stopped taking the formula with her sippy cup while we were in the hospital so all her feedings were given through her G-Tube. Even by doing this she gain a little over 1 pound which put her back in the 25 percentile while in the hospital. Today we used a different brand of sippy cup and she would take about 2 oz of her formula with the sippy cup at each feeding so we only had to give her the other 2 oz through the G-Tube.
The feeding goals we have for the next 2 weeks are: 3 – 4oz formula feedings during the day, 1 jar of stage 1 baby food (single ingredient), 1.5oz formula per hour for 8 hours during the night. Whatever formula she does not take by sippy cup during the day has to be given to her through the G-Tube.
Her daily medications now include:
Viokase enzymes (mixed in formula)
Ultrase enzymes (reintroducing)
Zantac (2x daily)
Prevacid (2x daily)
Aquadeks Vitamins (1x daily)
Pulmozyme (1x daily)
Albuteral (as needed)
Gabrielle is still on an antibiotic for the C. Diff (4x daily) and Flonase (2x daily) for a cold/allergies. She also has 10 minutes of chest percussions for airway clearance (3x daily).
Over the next few weeks we have 5 doctors appointments already scheduled. We start with a feeding evaluation that will help us to teach Gabrielle to eat again. Then Gabrielle has her 15 month check-up, a visit the CF Clinic and GI Doctor. Toward the end of the month Gabrielle will visit the surgeon where her current G-Tube will be replaced with a Mic-key button.
On May 15th, Gabrielle along with Ashley and I and her Grandparents will be participating in the Great Strides Walk at the Nashville Zoo. GREAT STRIDES is the Cystic Fibrosis (CF) Foundation's largest and most successful national fundraising event. We would like to invite you to walk with us and/or donate to the CF Foundation.
Jeff’s Great Strides Donation Link - http://www.cff.org/Great_Strides/JeffreyShaver
Ashley’s Great Strides Donation Link - http://www.cff.org/great_strides/AshleyShaver6704
Thanks for pray for Gabrielle and us!!!
In Christ,
Jeff, Ashley, and Gabrielle
Monday, April 26, 2010
April 26, 2010
Gabrielle is doing great from the surgeries. Having the epidural placed to control the pain was a great thing to do for her. Since the surgery she only had 4 extra doses of pain medicine and all of those were on Friday. Since then she has not appeared to be in any pain as a result of the surgery. They plan to start transitioning her from the epidural to other pain medications today and to remove the epidural on Tuesday. Her incisions are healing and the G-Tube is working and has bee running almost continuously since Friday afternoon.
Gabrielle has had some GI related issues that we were assuming were related to the excessive amount of feedings she is getting. The orders have been to feed her 1-1/2 ounces per hour through her feeding tube continuously around the clock. However, Gabrielle cannot handle that at this time so we have been having to turn the feeding pump off to allow time for her stomach to empty. We are having to be careful not to over fill her because that causes her to have dry heaves because she cannot throw-up anymore. Since she cannot throw-up there is only one possible way for stuff to come out and needless to say she has been going through a lot of diapers.
The doctors did decide to run some test on her stools. They found Clostridium difficile, also called C. difficile or "C. diff." It is a bacterium that can cause symptoms ranging from diarrhea to life-threatening inflammation of the colon. This bacteria cause illnesses that typically occurs after use of antibiotic medications. Basically what happens it there are good and bad bacteria in the intestines some antibiotics kill the good bacteria which allow the bad bacteria to thrive. Typically when the good bacteria are present then they are about to suppress or kill out the C. Diff bacteria. Last night Gabrielle was placed on another antibiotic which will target the C. Diff bacteria and give the good bacteria a chance to replenish. Another thing that can be done is to add probiotics to her diet, but we have to talk with the doctors and nutritionist about this.
Ashley and I thank you for all the prayers and the continued prayers.
In Christ,
Jeff, Ashley, and Gabrielle
Gabrielle has had some GI related issues that we were assuming were related to the excessive amount of feedings she is getting. The orders have been to feed her 1-1/2 ounces per hour through her feeding tube continuously around the clock. However, Gabrielle cannot handle that at this time so we have been having to turn the feeding pump off to allow time for her stomach to empty. We are having to be careful not to over fill her because that causes her to have dry heaves because she cannot throw-up anymore. Since she cannot throw-up there is only one possible way for stuff to come out and needless to say she has been going through a lot of diapers.
The doctors did decide to run some test on her stools. They found Clostridium difficile, also called C. difficile or "C. diff." It is a bacterium that can cause symptoms ranging from diarrhea to life-threatening inflammation of the colon. This bacteria cause illnesses that typically occurs after use of antibiotic medications. Basically what happens it there are good and bad bacteria in the intestines some antibiotics kill the good bacteria which allow the bad bacteria to thrive. Typically when the good bacteria are present then they are about to suppress or kill out the C. Diff bacteria. Last night Gabrielle was placed on another antibiotic which will target the C. Diff bacteria and give the good bacteria a chance to replenish. Another thing that can be done is to add probiotics to her diet, but we have to talk with the doctors and nutritionist about this.
Ashley and I thank you for all the prayers and the continued prayers.
In Christ,
Jeff, Ashley, and Gabrielle
Thursday, April 22, 2010
April 22, 2010
What a long day it has been. Gabrielle made it through the surgeries and the surgeon said both when good. When we finally made it back to the recovery room she was already awake and playing with her baby doll and blankets. She has not appeared to be in any pain up to this point.
Here is the breakdown of what has taken place. Gabrielle had the Nissen surgery, G-Tube surgery, epidural, catheter, and another IV. The PICC Line people do not like for the anesthesia people to use the PICC Line during surgery, so they had to place an IV in her foot. When talking about pain medication the surgeon and anesthesiologist recommended that Gabrielle get an epidural to control her pain instead of the standard narcotics through the IV. They said that when the epidurals work properly they are much better for CF patients since the narcotics would affect her breathing and the health of her lungs. Since the epidural numbs a lot of stuff Gabrielle needed a catheter since she would not know when her bladder was full. The Nissen surgery was an open surgery so she had an incision about 3 inches long running from her rib cage to her belly button. All the stitches where placed on the inside and surgical tape was used on the outside. The G-Tube was place and in about 3 weeks it will be changed out with a Mic-key button (www.mic-key.com), this can be done in the doctor’s office.
Ashley and I thank you for all the prayers and the continued prayers.
In Christ,
Jeff, Ashley, and Gabrielle
Here is the breakdown of what has taken place. Gabrielle had the Nissen surgery, G-Tube surgery, epidural, catheter, and another IV. The PICC Line people do not like for the anesthesia people to use the PICC Line during surgery, so they had to place an IV in her foot. When talking about pain medication the surgeon and anesthesiologist recommended that Gabrielle get an epidural to control her pain instead of the standard narcotics through the IV. They said that when the epidurals work properly they are much better for CF patients since the narcotics would affect her breathing and the health of her lungs. Since the epidural numbs a lot of stuff Gabrielle needed a catheter since she would not know when her bladder was full. The Nissen surgery was an open surgery so she had an incision about 3 inches long running from her rib cage to her belly button. All the stitches where placed on the inside and surgical tape was used on the outside. The G-Tube was place and in about 3 weeks it will be changed out with a Mic-key button (www.mic-key.com), this can be done in the doctor’s office.
Ashley and I thank you for all the prayers and the continued prayers.
In Christ,
Jeff, Ashley, and Gabrielle
Sunday, April 18, 2010
April 18, 2010
I have spent the last few days trying to figure out how to write this email. There seems to be no way to write it that make it any better. So we will go with short and to the point.
Gabrielle will be having two surgeries on Thursday, April 22, 2010 at 11am. The first surgery is for reflux and is called a Nissen Fundoplication. This surgery is needed since she has a history of reflux and because the second surgery will increase her reflux. The second surgery is for the placement of a Gastrostomy Tube (G-Tube).
During the Nissen surgery, the surgeon improves the natural barrier between the stomach and the esophagus by wrapping a part of the stomach known as the gastric fundus around the lower esophagus. This prevents the flow of acids from the stomach into the esophagus, and strengthens the valve between the esophagus and stomach, which stops acid from backing up into the esophagus as easily.
A gastrostomy feeding tube is either a tube or a button (skin level device) that is surgically placed into the stomach through the abdominal wall.
Gabrielle is currently scheduled to be admitted to Vanderbilt Children’s Hospital on Tuesday (4/20). She will have a PICC Line placed and start antibiotics to help get her ready for the surgery on Thursday. The PICC Line will be placed at 11am.
We ask that you continue to pray for Gabrielle as we begin this new phase in her treatment.
Jeff, Ashley, and Gabrielle
Gabrielle will be having two surgeries on Thursday, April 22, 2010 at 11am. The first surgery is for reflux and is called a Nissen Fundoplication. This surgery is needed since she has a history of reflux and because the second surgery will increase her reflux. The second surgery is for the placement of a Gastrostomy Tube (G-Tube).
During the Nissen surgery, the surgeon improves the natural barrier between the stomach and the esophagus by wrapping a part of the stomach known as the gastric fundus around the lower esophagus. This prevents the flow of acids from the stomach into the esophagus, and strengthens the valve between the esophagus and stomach, which stops acid from backing up into the esophagus as easily.
A gastrostomy feeding tube is either a tube or a button (skin level device) that is surgically placed into the stomach through the abdominal wall.
Gabrielle is currently scheduled to be admitted to Vanderbilt Children’s Hospital on Tuesday (4/20). She will have a PICC Line placed and start antibiotics to help get her ready for the surgery on Thursday. The PICC Line will be placed at 11am.
We ask that you continue to pray for Gabrielle as we begin this new phase in her treatment.
Jeff, Ashley, and Gabrielle
Wednesday, March 31, 2010
March 31, 2010
Well it has been a long month for Gabrielle, Ashley, and I. We began the month with Gabrielle being admitted to the hospital for a 14 day round of IV antibiotics and we are ending the month 6 days into a 14 day round of Augmentin. Just to put a few number of things, this is Gabrielle’s 3rd 14 day round of Augmentin since the first of the year. In the month of March Gabrielle spent 21 days in the hospital. In addition, Gabrielle had 5 visits to doctors’ offices during March.
Today we took Gabrielle to the GI doctor and CF Clinic. At the GI doctor we learned that the test for Milk and Soy allergies came back normal, Praise God! We are extremely thankful that we don’t have be concerned with a milk allergy at this time. The second test we were waiting to talk to the GI doctor about was the stomach empting test. Gabrielle’s stomach does have a delay in emptying. Thoughts are that the delay is from the inflammation that was found in her small intestines when they did the EGD. If the inflammation goes away then the delay in empting the stomach should resolve also. Originally it was thought the inflammation was from a food allergy, however the only food she was getting at the time was milk based and the test showed no milk allergy. The inflammation in her small intestines could be a result of her continually being sick this year. One possibility is that there is an overgrowth of bacteria in her small intestines. So to treat this and hopefully eliminate the delayed empting, after finishing this round of Augmentin she will go on a round of Erythromycin. The Erythromycin is used to speed up the empting of the stomach. The GI doctor is also making a referral for a Food (Eating) Study which will result if a referral to a Food Therapist. We also talk about the G-Tube and Nissen Surgeries that began at the end of February. The GI doctor is not a fan of the Nissen surgery in general but feels it will be beneficial for Gabrielle to have when she has a G-Tube placed. He also still feels that Gabrielle needs a G-tube as soon as possible. He feels that by improving her nutrition it will also help resolve the stomach empting delay.
The visit to the CF Clinic today was a continuation of the G-Tube and Nissen surgery talks. After much prayer, research, and discussions Ashley and I have come to the conclusion that it will be in Gabrielle’s best interest to have a G-Tube placed. We still have not made the final decision about the Nissen surgery, however it is looking like there is a good possibility that it will need to be done at the same time as the G-Tube. There is still one more test that could be run that would give us a better idea about the severity of her reflux. The GI doctor, CF Clinic, and Surgeon are suppose to discuss this test and let us know how beneficial it would be to have done. Also, our decision will take into account the possibility of have to have a second surgery to have the nissen done if it is not done with the first surgery.
As far as timing Ashely and I would like to wait until the beginning of the summer to have the surgery done. However, the doctors feel Gabrielle is at a critical state right now and could decline rapidly if she has another big illness. This is because she does not have any nutritional reserves to spare when she gets sick. We will go back to the CF Clinic in 2 weeks so we can evaluate how she does between now and then and to give us an better idea of how the next 2 months would be if we waited.
Please pray specifically…
…that Ashley and I make the right decisions upon consultation with the doctors
…that Gabrielle starts taking her enzymes by mouth again
…that Gabrielle starts eating solid foods
…that Gabrielle starts eating more food each day
…that as a result Gabrielle will gain all the weight that she needs to
…that Gabrielle can get over her illnesses
Thanks,
Jeff, Ashley, and Gabrielle
Today we took Gabrielle to the GI doctor and CF Clinic. At the GI doctor we learned that the test for Milk and Soy allergies came back normal, Praise God! We are extremely thankful that we don’t have be concerned with a milk allergy at this time. The second test we were waiting to talk to the GI doctor about was the stomach empting test. Gabrielle’s stomach does have a delay in emptying. Thoughts are that the delay is from the inflammation that was found in her small intestines when they did the EGD. If the inflammation goes away then the delay in empting the stomach should resolve also. Originally it was thought the inflammation was from a food allergy, however the only food she was getting at the time was milk based and the test showed no milk allergy. The inflammation in her small intestines could be a result of her continually being sick this year. One possibility is that there is an overgrowth of bacteria in her small intestines. So to treat this and hopefully eliminate the delayed empting, after finishing this round of Augmentin she will go on a round of Erythromycin. The Erythromycin is used to speed up the empting of the stomach. The GI doctor is also making a referral for a Food (Eating) Study which will result if a referral to a Food Therapist. We also talk about the G-Tube and Nissen Surgeries that began at the end of February. The GI doctor is not a fan of the Nissen surgery in general but feels it will be beneficial for Gabrielle to have when she has a G-Tube placed. He also still feels that Gabrielle needs a G-tube as soon as possible. He feels that by improving her nutrition it will also help resolve the stomach empting delay.
The visit to the CF Clinic today was a continuation of the G-Tube and Nissen surgery talks. After much prayer, research, and discussions Ashley and I have come to the conclusion that it will be in Gabrielle’s best interest to have a G-Tube placed. We still have not made the final decision about the Nissen surgery, however it is looking like there is a good possibility that it will need to be done at the same time as the G-Tube. There is still one more test that could be run that would give us a better idea about the severity of her reflux. The GI doctor, CF Clinic, and Surgeon are suppose to discuss this test and let us know how beneficial it would be to have done. Also, our decision will take into account the possibility of have to have a second surgery to have the nissen done if it is not done with the first surgery.
As far as timing Ashely and I would like to wait until the beginning of the summer to have the surgery done. However, the doctors feel Gabrielle is at a critical state right now and could decline rapidly if she has another big illness. This is because she does not have any nutritional reserves to spare when she gets sick. We will go back to the CF Clinic in 2 weeks so we can evaluate how she does between now and then and to give us an better idea of how the next 2 months would be if we waited.
Please pray specifically…
…that Ashley and I make the right decisions upon consultation with the doctors
…that Gabrielle starts taking her enzymes by mouth again
…that Gabrielle starts eating solid foods
…that Gabrielle starts eating more food each day
…that as a result Gabrielle will gain all the weight that she needs to
…that Gabrielle can get over her illnesses
Thanks,
Jeff, Ashley, and Gabrielle
Monday, March 22, 2010
March 22, 2010
We got to bring Gabrielle home from the hospital today. What an adventure we have been on the last 22 days. As in the last update, last Tuesday Gabrielle decided to stop taking her enzymes by mouth. Because of this, Jeff and I put her on pedialyte to keep her hydrated. Jeff contacted the doctors offices on Wednesday to let them know what Gabrielle was doing which landed us back at the hospital. Gabrielle was given pedialyte the rest of Wednesday and the first part of Thursday. After talking with the CF doctors on Thursday as well as the dietician, it was decided that Gabrielle would be put on a new formula, Peptamen Jr. 1.5. This new formula is hyperallergenic and has the same amount of calories as her previous formula. As far as the enzymes, they have given us a powder form to put in her formula that will digest the formula prior to her taking it. We will use this until we can teach her to retake the enzymes by mouth. It took Gabrielle a while to take to the new formula but by Friday afternoon she had gotten back to her amount per feeding that she had previously been taking.
Friday afternoon the GI doctor had scheduled some blood work to be taken to look for possible food allergies, specifically milk and soy. This is one reason for the change in formula. He saw Allergic patterns from the biopsies that were taken from her small intestines during her scope the previous week. He also scheduled a stomach emptying test to see how long it takes for food contents to empty through Gabrielle's stomach. Gabrielle had to drink formula mixed with radiation fluid. Then she laid on a table for 2 hours for pictures to be taken. Good thing was she was tired and took a nap.
We have not heard from the GI doctor about the results of the blood work. We were told that the emptying test did show signs in the abnormal range which means Gabrielle's stomach does not empty as fast as it should. We also have not discussed this with her GI doctor so we are not sure what he will do with the results of this test.
Gabrielle has lost some weight since her last CF clinic weigh in last Monday. We return to both the CF clinic and GI doctors next Wednesday, March 31. At this time we will discuss Gabrielle's nutrition and what the next step is in her plan of placing a G-tube, as well as the results from the tests.
Please continue to pray for Gabrielle as we battle her nutrition and that we can get her eating solid foods again.
With Love
Jeff, Ashley and Gabrielle
Friday afternoon the GI doctor had scheduled some blood work to be taken to look for possible food allergies, specifically milk and soy. This is one reason for the change in formula. He saw Allergic patterns from the biopsies that were taken from her small intestines during her scope the previous week. He also scheduled a stomach emptying test to see how long it takes for food contents to empty through Gabrielle's stomach. Gabrielle had to drink formula mixed with radiation fluid. Then she laid on a table for 2 hours for pictures to be taken. Good thing was she was tired and took a nap.
We have not heard from the GI doctor about the results of the blood work. We were told that the emptying test did show signs in the abnormal range which means Gabrielle's stomach does not empty as fast as it should. We also have not discussed this with her GI doctor so we are not sure what he will do with the results of this test.
Gabrielle has lost some weight since her last CF clinic weigh in last Monday. We return to both the CF clinic and GI doctors next Wednesday, March 31. At this time we will discuss Gabrielle's nutrition and what the next step is in her plan of placing a G-tube, as well as the results from the tests.
Please continue to pray for Gabrielle as we battle her nutrition and that we can get her eating solid foods again.
With Love
Jeff, Ashley and Gabrielle
Wednesday, March 17, 2010
March 17, 2010
Gabrielle was released from the hospital on Monday (3/15) only to return to the hospital today (3/17). All of the respiratory issues were taken care of over the past two weeks. However, the GI and eating issues remained. Gabrielle was eating and gaining weight so they released us, although her eating was on the decline and it was a “bad” day on Monday when they released us. I even told the doctors she was having a “bad” day before they released us. Yesterday (3/16) the only times we could get Gabrielle to eat was while she was sleeping. When she was awake she would gag and spit-up/throw-up. She would also start gagging when we were placing her in the high chair.
After talking with the CF doctors today they said Gabrielle needed to come back to the hospital to figure this out so she does not lose too much weight. The doctors want to start talking about surgery but we are going to start by making the doctors look at the results of the EGD that was done last Friday (3/12), the preliminary results showed a possibility of food allergies. Once we figure out what is causing Gabrielle’s issues currently then we will talk about what the doctors want to do.
Thanks for your continued prayers.
Jeff, Ashley, and Gabrielle
After talking with the CF doctors today they said Gabrielle needed to come back to the hospital to figure this out so she does not lose too much weight. The doctors want to start talking about surgery but we are going to start by making the doctors look at the results of the EGD that was done last Friday (3/12), the preliminary results showed a possibility of food allergies. Once we figure out what is causing Gabrielle’s issues currently then we will talk about what the doctors want to do.
Thanks for your continued prayers.
Jeff, Ashley, and Gabrielle
Friday, March 12, 2010
March 12, 2010
We found out this morning that Gabrielle is scheduled for an Esophagogastroduodenoscopy (EDG) and Bronchoscopy at 10:30 this morning. The EGD is an examination of the lining of the esophagus, stomach, and upper duodenum with a small camera (flexible endoscope) which is inserted down the throat. They are looking for inflammation from reflex and/or to see why she is refluxing still. The Bronchoscopy is being done to look at her lungs and to see if they can collect and identify any bacteria that may be in her lungs. The Bronchoscopy is only being done since she will already be sedated.
I will try to send a more detailed update tonight.
Leaving everything in God’s Hands,
Jeff, Ashley, and Gabrielle
I will try to send a more detailed update tonight.
Leaving everything in God’s Hands,
Jeff, Ashley, and Gabrielle
Wednesday, March 3, 2010
March 3, 2010
Gabrielle had her PICC line placed yesterday and everything went good. We are now in the routine of waiting on the next dose of medicine, round of respirtory therapy, or next feeding. In between each of these we try to keeping Gabrielle entertained. We are still having issues with her gagging when we give her enzymes and I assume we will have the same issue when we try feeding her yogurt and solid foods. We have talked with the CF Doctors and dietitian about it and we are waiting for the GI doctor to come and see her.
The dietitian has set eating and weight gain goals which sound achievable and hopefully they will help us work with Gabrielle so we can meet them. The eating goals are solid foods, 1 to 1-1/2 teaspoons of oil, 2 packets (1/4 teaspoon) of salt, and 24 oz Boost 1.5. Her weight gain goal is 1/2 ounce per day. We also have increased her enzymes to 4 capsuls prior to each feeding.
The dietitian has set eating and weight gain goals which sound achievable and hopefully they will help us work with Gabrielle so we can meet them. The eating goals are solid foods, 1 to 1-1/2 teaspoons of oil, 2 packets (1/4 teaspoon) of salt, and 24 oz Boost 1.5. Her weight gain goal is 1/2 ounce per day. We also have increased her enzymes to 4 capsuls prior to each feeding.
Monday, March 1, 2010
March 1, 2010
In the last update (2/24/10) we sent about Gabrielle we mentioned that after day nine of her second round of Augmentin the doctors were still concerned about her cough. Well today was her last dose of Augmentin and the sound of her cough has not improve and other things started over this past weekend such as spitting up mucus, gagging on solid foods and her enzymes, runny nose, and her breathing occasionally sounding like a purring kitten. As we were instructed to do by the doctors, we called the CF Clinic this morning. And as expected we made our fourth visit to the clinic in less than a month.
Since Gabrielle has been on two 14-day rounds of Augmentin since the first of the year and since she has been unable to get rid of her cough and other things, she has been admitted to Vanderbilt Children’s Hospital for the second time in 4 months for IV antibiotics. Her cough and other symptoms are such that if she did not have CF nothing would typically be done about them. However, since she does have CF we need to take the extra precautions and give her stronger antibiotics that target specific bacteria that are bad to CF patients. While in the hospital we will also be ensuring her reflux is under control and is not contributing to her cough and spit ups. We will also be talking with the dietitian and doctors about how to get Gabrielle to eat solid foods. Our goal is that at the end of this hospital visit is that we will be back on track and ready to go for at least another year without having to return to the hospital.
Today after the CF Clinic visit we were given a room and admitted to the hospital. After that Gabrielle received a standard IV so she could start her antibiotics tonight and then she had chest x-rays taken. She has already had one of her antibiotics and is getting ready to have her second one in a few minutes. She has also already had one round of respiratory therapy. Tomorrow at 1pm she will be sedated so she can have a PICC Line inserted for the remainder of the IV antibiotics.
Thanks for your continued prayers.
Jeff, Ashley, and Gabrielle
Since Gabrielle has been on two 14-day rounds of Augmentin since the first of the year and since she has been unable to get rid of her cough and other things, she has been admitted to Vanderbilt Children’s Hospital for the second time in 4 months for IV antibiotics. Her cough and other symptoms are such that if she did not have CF nothing would typically be done about them. However, since she does have CF we need to take the extra precautions and give her stronger antibiotics that target specific bacteria that are bad to CF patients. While in the hospital we will also be ensuring her reflux is under control and is not contributing to her cough and spit ups. We will also be talking with the dietitian and doctors about how to get Gabrielle to eat solid foods. Our goal is that at the end of this hospital visit is that we will be back on track and ready to go for at least another year without having to return to the hospital.
Today after the CF Clinic visit we were given a room and admitted to the hospital. After that Gabrielle received a standard IV so she could start her antibiotics tonight and then she had chest x-rays taken. She has already had one of her antibiotics and is getting ready to have her second one in a few minutes. She has also already had one round of respiratory therapy. Tomorrow at 1pm she will be sedated so she can have a PICC Line inserted for the remainder of the IV antibiotics.
Thanks for your continued prayers.
Jeff, Ashley, and Gabrielle
Wednesday, February 24, 2010
February 24, 2010
We took Gabrielle for another visit at the CF Clinic today, this was our third visit this month. She is on day 9 of 14 with this round of Augmentin for her coughing and lung stuff. The doctors heard her cough and were concerned. The felt that the Augmentin should have already taken care of the bacteria in her lungs and reduced her cough back to her normal level. They told us that we need to call them if her cough has not returned to normal in the next couple days. They said there is a chance that there are some bacterial that the Augmentin is not working on.
The main concern that they have had from the beginning is her weight and nutrition. Since the beginning of this year it has become more of a focus. Gabrielle has not gained and maintained her weight since the first of the year. At her January 6th visit she weighed 18lbs 10oz today (2/24) she weighed 18lbs 14oz. Between these visits her weight has gone up and down like a roller coaster. Gabrielle’s appetite has also fluctuated mainly because she has been sick 3 times since the beginning of this year. Based on Gabrielle’s history with her weight, illnesses, appetite, reflux, and other things the doctors feel that she is heading in the direction of needing a G-tube (feeding tube) for additional feedings during the night. They began talking with us about this today and gave us some information to look over.
In an attempt to get Gabrielle to gain weight we have once again changed her formula. We are changing to Boost Kids Essentials 1.5. This formula has 45 calories per ounce. Her previous formula only had 30 calories per ounce, normal infant formula has 22 calories per ounce. We are on a trial basis for 2 weeks to see how it affects her. If she has a dramatic increase in weight and appetite we can delay any further discussion of the G-tube. However, if there is not a satisfactory change then we will continue to have discussions about the G-tube and will have to make a decision at some point.
If WE decide to allow Gabrielle to have a G-tube then there is another procedure to help reduce/control reflux that may need to be done at the same time.
Please pray for Gabrielle to finish recovering from this cough/lung stuff by Monday (3/1) and for her to have a great response to the new formula so we don’t have to continue the G-tube discussions.
In Christ,
Jeff, Ashley, and Gabrielle.
The main concern that they have had from the beginning is her weight and nutrition. Since the beginning of this year it has become more of a focus. Gabrielle has not gained and maintained her weight since the first of the year. At her January 6th visit she weighed 18lbs 10oz today (2/24) she weighed 18lbs 14oz. Between these visits her weight has gone up and down like a roller coaster. Gabrielle’s appetite has also fluctuated mainly because she has been sick 3 times since the beginning of this year. Based on Gabrielle’s history with her weight, illnesses, appetite, reflux, and other things the doctors feel that she is heading in the direction of needing a G-tube (feeding tube) for additional feedings during the night. They began talking with us about this today and gave us some information to look over.
In an attempt to get Gabrielle to gain weight we have once again changed her formula. We are changing to Boost Kids Essentials 1.5. This formula has 45 calories per ounce. Her previous formula only had 30 calories per ounce, normal infant formula has 22 calories per ounce. We are on a trial basis for 2 weeks to see how it affects her. If she has a dramatic increase in weight and appetite we can delay any further discussion of the G-tube. However, if there is not a satisfactory change then we will continue to have discussions about the G-tube and will have to make a decision at some point.
If WE decide to allow Gabrielle to have a G-tube then there is another procedure to help reduce/control reflux that may need to be done at the same time.
Please pray for Gabrielle to finish recovering from this cough/lung stuff by Monday (3/1) and for her to have a great response to the new formula so we don’t have to continue the G-tube discussions.
In Christ,
Jeff, Ashley, and Gabrielle.
Tuesday, February 16, 2010
February 16, 2010
Gabrielle started another 14-day round of Augmentin today. This will be the second round in a month (last time was Jan 6-21). She has a been coughing, hacking, gagging, and draining since last Friday. We took her to the CF clinic Monday and saw the nurse practitioner and the dietitian. Since this is the second round of Augmentin there is a chance that if it does not work or if she gets sick again that she would be admitted to the hospital again for another round of IV antibiotics. We are scheduled to go back to the CF Clinic on Feb 24th to see the doctors and dietitian again.
Our prayer and desire is for this round of Augmentin to work and that Gabrielle does not get sick again for the rest of winter. However, we are also praying that God’s Will be done, even if that is frequent hospitalizations, in Gabrielle’s and our lives so we may bring glory to His name through her CF.
Jeff, Ashley, and Gabrielle
Our prayer and desire is for this round of Augmentin to work and that Gabrielle does not get sick again for the rest of winter. However, we are also praying that God’s Will be done, even if that is frequent hospitalizations, in Gabrielle’s and our lives so we may bring glory to His name through her CF.
Jeff, Ashley, and Gabrielle
Saturday, February 13, 2010
1st Birthday
WOW!!! How time flies. On Saturday, February 13 Gabrielle celebrated her 1st Birthday. Her party theme was Princess (because we all know that is what she is). She celebrated at the house with her grandparents (except Nana, she was sick), Aunt Valerie and some close friends.
We had a great time and she got some awesome presents including a swing for outside and a stroller for us to take to the park this summer and push her baby dolls. She got some other toys and of course clothes.
The cake was made by daddy. It was a strawberry cake with strawberry icing. To decorate it we put rubber ducks on it as this is her favorite animal. Gabrielle was not impressed with the idea of playing in her cake. Jeff and I had to make her put her fingers in the cake. She was more interested in the ducks on the cake.
Some milestones that Gabrielle has hit as she turned one are:
• Walking a few steps at a time
• Learning to say dog and pa
• Identifying her nose and belly
We had a great time and she got some awesome presents including a swing for outside and a stroller for us to take to the park this summer and push her baby dolls. She got some other toys and of course clothes.
The cake was made by daddy. It was a strawberry cake with strawberry icing. To decorate it we put rubber ducks on it as this is her favorite animal. Gabrielle was not impressed with the idea of playing in her cake. Jeff and I had to make her put her fingers in the cake. She was more interested in the ducks on the cake.
Some milestones that Gabrielle has hit as she turned one are:
• Walking a few steps at a time
• Learning to say dog and pa
• Identifying her nose and belly
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