We had our monthly office visit at the CF Clinic on July 1st. At that visit the doctors, dietitian, and us decided to start Gabrielle on enzymes as a trial until our next office visit on August 5th. The decision to start Gabrielle on enzymes was based on her weight gain and stools. Currently Gabrielle is only gaining one-third of the weight she should be gaining based on the specialized formula we are giving her. Both Pancreatic Elastase test run to check her enzyme levels have come back in the low normal range. But based on her stools the doctors think there may be a chance that her enzyme levels fluctuate during the day.
By placing Gabrielle on a low dose of Enzyme to supplement her natural enzymes two things should happen. First, the enzymes will digest the food better allowing for her to gain weight faster so that she can grow larger lungs. Second, they should add consistency to her stools. If the enzymes do what they are suppose to do then Gabrielle will more than likely be on the enzymes the rest of her life. Right now she is on them until our next clinic visit on August 5th.
We finally were able to get things worked out and got the enzymes yesterday afternoon and started giving them to her this morning (7/11). We will be getting the enzymes from Walgreens. The pharmaceutical company that makes the enzyme is providing them for free for the first 4 years. They will also provide her vitamins for free when she starts taking them.
Gabrielle is remaining on both the Zantac and Prevacid to reduce the acid in her stomach. This will not only help with reflux but will also aid in the activation of the enzymes.
The other thing we will be doing to help Gabrielle gain weight it to wake her up in the middle of the night for an extra bottle when she eats 18oz or less during a day.
Thanks for praying for Gabrielle and us. We don't know how to ask you to pray for Gabrielle at this time. We don't want Gabrielle to have to take enzymes the rest of her life, but then we want her to have them if she needs them. God knows what Gabrielle needs and he will provide for her. So our prayer is that God will watch over Gabrielle as she grows and develops.
Leaving all in God's Hands,
Jeff, Ashley, and Gabrielle
Saturday, July 11, 2009
Wednesday, July 1, 2009
July 2009 CF Clinic Visit
It has been a while since we have sent an update on Gabrielle. To us this has been great news since this means that Baby Girl has generally been doing good.
Today we had our monthly office visit at the CF Clinic. This was a great visit with respect to the communication/relational side of Gabrielle's care.
Our appointment this time was with the head CF doctor, another CF doctor, the social worker, the dietitian, the dietitian's boss, and the CF nurse.
It appears that right now we will be seeing one of the CF doctors when we visit the clinic instead of the Nurse Practitioner, whom we had some communication/relational issues with. They did not say this but this appointment and the next appointment are with one of the doctors.
The doctors said that Gabrielle is doing good overall and that Ashley and I are doing a good job with her care.
During the first year of Gabrielle's life the focus of care for CF is her nutrition and gaining weight. For a non-CF child Gabrielle is doing good with maintaining the 25% weight curve. However, in order to do this she is taking a specialized formula that is partially predigested and is mixed to give her 30% more calories than regular formula. With the special formula being partially predigested this allows for more of the calories and nutrients to be absorbed by her body. With this said, Gabrielle should be gradually gaining enough weight so that she is changing weight curves. The goal is for her to reach the 50% weight curve. To accomplish this she should gain 1 ounce per day on average. Currently she is averaging 1/3 of an ounce per day.
Another issue we have been working with is reflux. Last month Gabrielle had an Upper GI (barium test) to check for reflux and make sure the anatomy of the Upper GI was normal. The test came back that everything looked normal and they did not see reflux during the test. However, Gabrielle did have reflux problems and for that she was placed on Zantac and Prevacid and has been on both for over a month now. Within the last week Ashley and I have noticed that Gabrielle has less gas, less burping between bottles, and basically no reflux or spitup between bottles. So the medications have been working.
One way to tell if Gabrielle' pancreas is producing enough enzymes to digest the food is to look at her stool. Her stools seem to go in cycles from watery (everything absorbed into the diaper) to runny to runny with mucus to pasty (normal). Since starting the Prevacid her stools cycle from runny to runny with mucus to pasty. The doctors attribute this change to the Prevacid and Zantac reducing the amount of acid in her stomach.
With all that said, before we are referred to a GI doctor to see about her abnormal stool cycles we are going to rule out any CF related issues.
Gabrielle has had two Pancreatic Elastase test run to check the amount of enzymes her pancreas is producing. The results of both test came back normal, but are on the low end of normal. Her pancreas could be sufficient
(normal) for years then become insufficient for the rest of her life or could stay sufficient her whole life or turn insufficient at anytime. This is something that has to be watched. Since her stools seem to cycle the doctors say that one possibility is that her pancreatic enzymes may be cycling also from having enough to not having enough. When you combine this with her staying on the 25% weight curve despite the special formula and increased calories, then something needs to be done.
Gabrielle is being placed on a low dose of Enzyme to supplement her natural enzymes. The enzymes should do two things. First, the enzymes will digest the food better allowing for her to gain weight faster so that she can grow larger lungs. Second, they should add consistency to her stools. If the enzymes do what they are suppose to do then Gabrielle will more than likely be on the enzymes the rest of her life. Right now she is on them until our next clinic visit on July 29th.
Gabrielle is remaining on both the Zantac and Prevacid to reduce the acid in her stomach. This will not only help with reflux but will also aid in the activation of the enzymes. She will begin the enzymes either Friday or Monday when we receive them. The enzymes are coming from the CF Services Pharmacy by mail.
The other thing we will be doing to help Gabrielle gain weight it to wake her up in the middle of the night for an extra bottle when she eats 18oz or less during a day.
Thanks for praying for Gabrielle and us. We don't know how to ask you to pray for Gabrielle at this time. We don't want Gabrielle to have to take enzymes the rest of her life, but then we want her to have them if she needs them. God knows what Gabrielle needs and he will provide for her. So our prayer is that God will watch over Gabrielle as she grows and develops.
Leaving all in God's Hands,
Jeff, Ashley, and Gabrielle
Today we had our monthly office visit at the CF Clinic. This was a great visit with respect to the communication/relational side of Gabrielle's care.
Our appointment this time was with the head CF doctor, another CF doctor, the social worker, the dietitian, the dietitian's boss, and the CF nurse.
It appears that right now we will be seeing one of the CF doctors when we visit the clinic instead of the Nurse Practitioner, whom we had some communication/relational issues with. They did not say this but this appointment and the next appointment are with one of the doctors.
The doctors said that Gabrielle is doing good overall and that Ashley and I are doing a good job with her care.
During the first year of Gabrielle's life the focus of care for CF is her nutrition and gaining weight. For a non-CF child Gabrielle is doing good with maintaining the 25% weight curve. However, in order to do this she is taking a specialized formula that is partially predigested and is mixed to give her 30% more calories than regular formula. With the special formula being partially predigested this allows for more of the calories and nutrients to be absorbed by her body. With this said, Gabrielle should be gradually gaining enough weight so that she is changing weight curves. The goal is for her to reach the 50% weight curve. To accomplish this she should gain 1 ounce per day on average. Currently she is averaging 1/3 of an ounce per day.
Another issue we have been working with is reflux. Last month Gabrielle had an Upper GI (barium test) to check for reflux and make sure the anatomy of the Upper GI was normal. The test came back that everything looked normal and they did not see reflux during the test. However, Gabrielle did have reflux problems and for that she was placed on Zantac and Prevacid and has been on both for over a month now. Within the last week Ashley and I have noticed that Gabrielle has less gas, less burping between bottles, and basically no reflux or spitup between bottles. So the medications have been working.
One way to tell if Gabrielle' pancreas is producing enough enzymes to digest the food is to look at her stool. Her stools seem to go in cycles from watery (everything absorbed into the diaper) to runny to runny with mucus to pasty (normal). Since starting the Prevacid her stools cycle from runny to runny with mucus to pasty. The doctors attribute this change to the Prevacid and Zantac reducing the amount of acid in her stomach.
With all that said, before we are referred to a GI doctor to see about her abnormal stool cycles we are going to rule out any CF related issues.
Gabrielle has had two Pancreatic Elastase test run to check the amount of enzymes her pancreas is producing. The results of both test came back normal, but are on the low end of normal. Her pancreas could be sufficient
(normal) for years then become insufficient for the rest of her life or could stay sufficient her whole life or turn insufficient at anytime. This is something that has to be watched. Since her stools seem to cycle the doctors say that one possibility is that her pancreatic enzymes may be cycling also from having enough to not having enough. When you combine this with her staying on the 25% weight curve despite the special formula and increased calories, then something needs to be done.
Gabrielle is being placed on a low dose of Enzyme to supplement her natural enzymes. The enzymes should do two things. First, the enzymes will digest the food better allowing for her to gain weight faster so that she can grow larger lungs. Second, they should add consistency to her stools. If the enzymes do what they are suppose to do then Gabrielle will more than likely be on the enzymes the rest of her life. Right now she is on them until our next clinic visit on July 29th.
Gabrielle is remaining on both the Zantac and Prevacid to reduce the acid in her stomach. This will not only help with reflux but will also aid in the activation of the enzymes. She will begin the enzymes either Friday or Monday when we receive them. The enzymes are coming from the CF Services Pharmacy by mail.
The other thing we will be doing to help Gabrielle gain weight it to wake her up in the middle of the night for an extra bottle when she eats 18oz or less during a day.
Thanks for praying for Gabrielle and us. We don't know how to ask you to pray for Gabrielle at this time. We don't want Gabrielle to have to take enzymes the rest of her life, but then we want her to have them if she needs them. God knows what Gabrielle needs and he will provide for her. So our prayer is that God will watch over Gabrielle as she grows and develops.
Leaving all in God's Hands,
Jeff, Ashley, and Gabrielle
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