Things have been going good for Gabrielle. She is still content here in the hospital. She is eating, sleeping, watching TV and playing. To keep things interesting for her we are bringing her a new toy to play with everyday. She has a foam mat on the floor so she can be in the floor to crawl and play. She also has a walker so she can roam around the rest of the room.
She has gotten use to most of her therapies and allows them to be done without much fuss. We are still trying to find something that will keep her attention for the entire 20-30 minutes during her respiratory therapy. We have things that keep her attention for 10-15 minutes after that she gets a little restless, but we are still able to complete the therapy it is just a little bit more challenging.
We have now been able to talk with all of the doctors and have also gotten all the lab results back. No new bacteria grew in the cultures and the bacteria the doctors are concerned about did not grow, so the Pulmonary doctors are changing her treatment from 14 days to 7 days. This means we are being discharged from the hospital tomorrow (11/13) without having to continue the antibiotics at home.
The GI doctor came and talked with us earlier this week. The biopsies showed inflammation in the tissues in her esophagus from acid reflux. The doctor mentioned increasing her reflux medicine. He also wants to run an impedance study at a later time. When this test is run Gabrielle will have to stop all her medicines and he does not want to do that to her at this time.
An impedance study is done to help evaluate acid and non-acid gastroesophageal reflux. In this test, a thin, flexible tube is passed through the nose, down the back of the throat, and into the esophagus. The tube is carefully taped into place on your child's cheek. The end of the tube is attached to computer which will remain at your child's bedside throughout the study. An Impedance Study takes 18 to 24 hours.
One issue that has developed over the last few weeks is that Gabrielle has lost interest in her formula. This is causing her to only take 10-12 ounces of formula per day, this includes the 2.5 ounces that is mixed in her rice cereal each day. The issue is hydration and calories. To try and fix this while in the hospital we are mixing her formula with a vanilla flavored supplement, Nutren Junior. This will be the supplement that she goes on when she stops taking her formula. She seems to like the taste better. When we get home we are going to try adding Vanilla Extract to her formula to see if that works. If it works then we will continue to stay on her formula, if it does not work we will change to the supplement.
There have been changes made to her home maintenance treatments but all the changes are manageable. Once we receive final instructions from the CF Care team about our new home treatments we will post another update
Thank you for all your prayers during this time. Gabrielle has done a great job being hospitalize and Ashley and I have been able to see what all is involved in the hospital treatments.
We are going home Friday!!!!!!!!!!!!!!!!!!!!!!!
Jeff, Ashley, and Gabrielle
Thursday, November 12, 2009
Saturday, November 7, 2009
November 7, 2009
What an experience it has been so far. We arrived at Vanderbilt Children’s Hospital at 7am Friday morning and was joined by Pastor Joe and the Grandparents. After checking in we had time to fellowship as we waited to be called back for preparations. Before going back we had a time of prayer for Gabrielle and her doctors. At 8:45am we were finally called back to begin the preparations for the procedures.
Gabrielle’s vitals were taken then we were taken to a holding room. Once in the holding room doctors and nurses started coming and talking to us about the different things Gabrielle was going to be experiencing. There were times that one person would be talking with Ashley while another was talking with Jeff. At 9:15am after everyone had talked with us and all the consents were signed Gabrielle was taken back to the procedure room and Ashley and I to a small waiting room. Gabrielle had fallen asleep prior to time to go to the procedure room so that was a blessing for us and her.
All of the procedures were done under anesthesia. They planned on starting the anesthesia through a mask. After the mask they could give some through an IV. Gabrielle was also hooked up to a standard IV in her leg to provide her fluids during the procedures.
The first procedure was a bronchoscopy. This is where a camera is sent into her lungs to examine them. They also sprayed a small amount of saline solution in to wash some mucus off of the lungs and then they sucked it back up to collect a sample. This procedure took 10-15 minutes to complete. The doctors told us visually everything looked good. We are waiting for the results of the bacteria cultures so we know the different types of bacteria in her lungs. Once this is known the doctors can finalize her treatment regime.
The second procedure was an Esophagogastroduodenoscopy (EGD) with biopsy. An EGD is an examination of the lining of the esophagus, stomach, and upper duodenum with a small camera which is inserted down the throat. Biopsies were taken so they linings could be examined under a microscope for inflammation and to determine how the reflux medicines are working and if Gabrielle is having any allergic reactions to her formula. This procedure also took 10-15 minutes to complete. The GI Doctor told us the visually everything looked good. We are waiting for the results of the biopsies which we should get Monday or Tuesday.
The third procedure was to insert a peripherally inserted central catheter or PICC Line. A PICC Line is a long, slender, small, flexible tube that is inserted into a peripheral vein in the upper arm and sent through the vein until it reaches a large vein in the chest near the heart. Ashley and I decided to have the PICC Line placed in Gabrielle to reduce the number of times she would be stuck with a needle. The PICC Line takes the place of an standard IV and will last 2-3 weeks verses the 3-4 days a standard IV would last. Since Gabrielle’s IV antibiotic will run for 14 days the PICC Line was the best way to go. The PICC Line took 30-60 minutes to place and required a chest x-ray to verify its position. The PICC Line was verified and approved for use.
The forth procedure was the Chest X-ray to verify the position of the PICC Line. This was done after she had woke up from the anesthesia. The doctors also used this opportunity to use the Chest X-ray to examine her lungs for blockages so an extra view was taken with the Chest X-ray. The Chest X-rays looked good both in regards to the PICC Line and looking at her lungs.
Ashley and I were taken back to the recovery at 11:30am. When we arrived Gabrielle had just woke up and was scared and crying. We were able to get her calmed down and she fell back asleep. Ashley and I stayed with Gabrielle from that point on. About 2:30pm we were able to go and have the Chest X-rays done and then returned to recovery to wait on a room. At 4:30pm we were finally taken to a room where Gabrielle will remain for the next 7-14 days. The IV antibiotics last for 14 days but there is a chance we can finish the last week of treatment at home.
The IV antibiotics currently consist of two different antibiotics. The first antibiotic, Cefepime, is given every 8 hours and the second, Tobramycin, is given once a day. It takes about an hour for each antibiotic. Blood is drawn each day to check her kidneys and to check the level of Tobramycin in her blood stream.
Another part of her treatment is her Respiratory Therapy. Her Respiratory Therapy consist of Chest Percussions and Aerosol inhalants. The chest percussions are the same as we have been doing at home. The only difference is they are being done 4 times per day, where at home it was only twice. A new part of her Respiratory Therapy are the Aerosol inhalants during the 14 days of antibiotics she is receiving Albuterol prior to the chest percussions 4 times per day and then twice a day she is receiving Pulmozyme after her chest percussions. The Albuterol opens her airways up so the mucus can flow out easier. The Pulmozyme actually breaks down the mucus at the cellular level. After the 14 days of antibiotics the chest percussions should reduce back to twice a day and we should also be able to stop the Albuterol. However, the Pulmozyme will become part of her daily treatment.
Yesterday Gabrielle was tired and cranky as expected. This morning she woke-up as her normal active cheerful self. She is still getting use to the different treatments that she has to go through. As the week progresses hopefully all these treatments will become second nature to her and we can get through them without any fussing.
Prayer request for now are that Gabrielle becomes adjusted to her new treatments.
We are allowed to have visitors and have to follow the guidelines of the hospital. Visits from other family members and friends are encouraged during the day and evening hours. The routine visiting hours are 9:00 a.m. – 9:00 p.m. All family and visitors should wash their hands upon entering a child’s room. If a visitor has a fever, rash, diarrhea, vomiting, cold, or any recent exposure to communicable disease (chicken pox, measles, mumps), for the protection of our patients, they may not come to the patient care floors.
Gabrielle is in room 7533 at Vanderbilt Children’s Hospital. Take the Main Hospital Elevators up to the 7th floor and go to Pod C. There is a gray box on the right wall that will buzz the nurse’s station so they can open the door. You will need to sign in at the nurse’s station.
Jeff, Ashley, and Gabrielle
Gabrielle’s vitals were taken then we were taken to a holding room. Once in the holding room doctors and nurses started coming and talking to us about the different things Gabrielle was going to be experiencing. There were times that one person would be talking with Ashley while another was talking with Jeff. At 9:15am after everyone had talked with us and all the consents were signed Gabrielle was taken back to the procedure room and Ashley and I to a small waiting room. Gabrielle had fallen asleep prior to time to go to the procedure room so that was a blessing for us and her.
All of the procedures were done under anesthesia. They planned on starting the anesthesia through a mask. After the mask they could give some through an IV. Gabrielle was also hooked up to a standard IV in her leg to provide her fluids during the procedures.
The first procedure was a bronchoscopy. This is where a camera is sent into her lungs to examine them. They also sprayed a small amount of saline solution in to wash some mucus off of the lungs and then they sucked it back up to collect a sample. This procedure took 10-15 minutes to complete. The doctors told us visually everything looked good. We are waiting for the results of the bacteria cultures so we know the different types of bacteria in her lungs. Once this is known the doctors can finalize her treatment regime.
The second procedure was an Esophagogastroduodenoscopy (EGD) with biopsy. An EGD is an examination of the lining of the esophagus, stomach, and upper duodenum with a small camera which is inserted down the throat. Biopsies were taken so they linings could be examined under a microscope for inflammation and to determine how the reflux medicines are working and if Gabrielle is having any allergic reactions to her formula. This procedure also took 10-15 minutes to complete. The GI Doctor told us the visually everything looked good. We are waiting for the results of the biopsies which we should get Monday or Tuesday.
The third procedure was to insert a peripherally inserted central catheter or PICC Line. A PICC Line is a long, slender, small, flexible tube that is inserted into a peripheral vein in the upper arm and sent through the vein until it reaches a large vein in the chest near the heart. Ashley and I decided to have the PICC Line placed in Gabrielle to reduce the number of times she would be stuck with a needle. The PICC Line takes the place of an standard IV and will last 2-3 weeks verses the 3-4 days a standard IV would last. Since Gabrielle’s IV antibiotic will run for 14 days the PICC Line was the best way to go. The PICC Line took 30-60 minutes to place and required a chest x-ray to verify its position. The PICC Line was verified and approved for use.
The forth procedure was the Chest X-ray to verify the position of the PICC Line. This was done after she had woke up from the anesthesia. The doctors also used this opportunity to use the Chest X-ray to examine her lungs for blockages so an extra view was taken with the Chest X-ray. The Chest X-rays looked good both in regards to the PICC Line and looking at her lungs.
Ashley and I were taken back to the recovery at 11:30am. When we arrived Gabrielle had just woke up and was scared and crying. We were able to get her calmed down and she fell back asleep. Ashley and I stayed with Gabrielle from that point on. About 2:30pm we were able to go and have the Chest X-rays done and then returned to recovery to wait on a room. At 4:30pm we were finally taken to a room where Gabrielle will remain for the next 7-14 days. The IV antibiotics last for 14 days but there is a chance we can finish the last week of treatment at home.
The IV antibiotics currently consist of two different antibiotics. The first antibiotic, Cefepime, is given every 8 hours and the second, Tobramycin, is given once a day. It takes about an hour for each antibiotic. Blood is drawn each day to check her kidneys and to check the level of Tobramycin in her blood stream.
Another part of her treatment is her Respiratory Therapy. Her Respiratory Therapy consist of Chest Percussions and Aerosol inhalants. The chest percussions are the same as we have been doing at home. The only difference is they are being done 4 times per day, where at home it was only twice. A new part of her Respiratory Therapy are the Aerosol inhalants during the 14 days of antibiotics she is receiving Albuterol prior to the chest percussions 4 times per day and then twice a day she is receiving Pulmozyme after her chest percussions. The Albuterol opens her airways up so the mucus can flow out easier. The Pulmozyme actually breaks down the mucus at the cellular level. After the 14 days of antibiotics the chest percussions should reduce back to twice a day and we should also be able to stop the Albuterol. However, the Pulmozyme will become part of her daily treatment.
Yesterday Gabrielle was tired and cranky as expected. This morning she woke-up as her normal active cheerful self. She is still getting use to the different treatments that she has to go through. As the week progresses hopefully all these treatments will become second nature to her and we can get through them without any fussing.
Prayer request for now are that Gabrielle becomes adjusted to her new treatments.
We are allowed to have visitors and have to follow the guidelines of the hospital. Visits from other family members and friends are encouraged during the day and evening hours. The routine visiting hours are 9:00 a.m. – 9:00 p.m. All family and visitors should wash their hands upon entering a child’s room. If a visitor has a fever, rash, diarrhea, vomiting, cold, or any recent exposure to communicable disease (chicken pox, measles, mumps), for the protection of our patients, they may not come to the patient care floors.
Gabrielle is in room 7533 at Vanderbilt Children’s Hospital. Take the Main Hospital Elevators up to the 7th floor and go to Pod C. There is a gray box on the right wall that will buzz the nurse’s station so they can open the door. You will need to sign in at the nurse’s station.
Jeff, Ashley, and Gabrielle
Thursday, November 5, 2009
November 5, 2009
Gabrielle is scheduled for her procedures at 9am tomorrow (11/6) morning. After everything is completed she will be moved to a room to start the IV antibiotics. We will send an update after we get settled in her room tomorrow to let everyone know how she is doing.
Thanks for your continued prayers.
Jeff, Ashley, & Gabrielle
Thanks for your continued prayers.
Jeff, Ashley, & Gabrielle
Wednesday, November 4, 2009
November 2009 CF Clinic Visit
It has been a long time since we last sent out an update on Gabrielle. We are actually excited that it has been such a long time since this means that everything has been going good for her in regards to the Cystic Fibrosis.
Today was Gabrielle’s monthly appointment with the CF Clinic and also a revisit with her GI doctor. Things looked good with both visits but Gabrielle is showing signs that it is time to start a new phase in the treatment for her CF. Right now we are preparing for Gabrielle to be admitted to Vanderbilt Children’s Hospital so she can receive IV antibiotics. The treatment last for two weeks with at least the first week being in the hospital, the second week is dependent on how things go and how Ashley and I feel. We are waiting for the doctor to call us to let us know when things have been arranged. We are expecting the enter the hospital on Friday (11/6) but it may be tomorrow (11/5).
When she is first admitted she will be sedated so they can collect samples from her lungs to test for the different bacteria that are present. This will allow them to give the proper antibiotics. Since she will be sedated her GI doctor wants to look in her throat and stomach to help figure out the issues she is having with reflux so he can better treat it.
This is new to us and as we figure things out we will keep you updated. For now we ask that you be in prayer for us as we prepare to enter the hospital and begin this treatment.
To God Be All The Glory!!!
Jeff, Ashley, & Gabrielle
Today was Gabrielle’s monthly appointment with the CF Clinic and also a revisit with her GI doctor. Things looked good with both visits but Gabrielle is showing signs that it is time to start a new phase in the treatment for her CF. Right now we are preparing for Gabrielle to be admitted to Vanderbilt Children’s Hospital so she can receive IV antibiotics. The treatment last for two weeks with at least the first week being in the hospital, the second week is dependent on how things go and how Ashley and I feel. We are waiting for the doctor to call us to let us know when things have been arranged. We are expecting the enter the hospital on Friday (11/6) but it may be tomorrow (11/5).
When she is first admitted she will be sedated so they can collect samples from her lungs to test for the different bacteria that are present. This will allow them to give the proper antibiotics. Since she will be sedated her GI doctor wants to look in her throat and stomach to help figure out the issues she is having with reflux so he can better treat it.
This is new to us and as we figure things out we will keep you updated. For now we ask that you be in prayer for us as we prepare to enter the hospital and begin this treatment.
To God Be All The Glory!!!
Jeff, Ashley, & Gabrielle
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