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
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