Families are what make life rich. Love is what binds us together. Joy is being surrounded by both. ~Unknown
Monday, January 21, 2013
What my kids may be doing while I am on the phone....
Saturday, January 12, 2013
This week--Clinic visit recap and more (It's long but it's a much needed medical update as things seem to be changing for Finn)
We're starting off 2013 by laying low. With the severe flu season, and RSV, and everything else I hear that's going around, we're content to stay home, laugh and play. This week there were several things that I "wanted" to do, but figured weren't really necessary and so we just stayed in. We really don't need anyone getting sick. Our only plans for venturing out this month are limited and mostly are just for medical appointments.
Monday we had Finn's quarterly CF clinic visit. I'll admit that I had a list of questions that I wanted to discuss with the doctor, and I was nervous about his weight. I knew it wasn't going to be a great visit, but I didn't expect it to turn into the stress that it did. Finn spent the weekend with a low appetite and occasional vomiting. I wasn't sure if he was all of a sudden dealing with his random tummy issues again or if we had a GI bug. But either way, he wasn't eating and I knew his weight was going to be affected. And I was right. He weighed in at 27.6 pounds. To top it off, he has grown (as evidenced by the fact that his pants are getting short on him) and the nurse measured him at 37.4 inches. (I don't think that's completely accurate. 37 inches would be more accurate) This put his BMI at the 2nd percentile.
The first time a G-tube (a feeding tube surgically inserted into the stomach) was mentioned to me at clinic was last June. The dietitian has been pushing for one for Finn for quite some time, but our doctor has been very understanding and patient. I have had several conversations with her about our natural genetics and that Finn seemed to be doing fine and staying on his own curve--right around 15% BMI. The doctor agreed that as long as he stayed on his curve and did not drop below the 10% BMI mark that we would hold off on the G-tube. As I have processed this and looked at Kai's growth for a pattern and example, I've known that we would eventually fall off of the curve, I just didn't know when it would be. I did not expect it to happen now.
The dietitian came in to see us with Finn's numbers and we talked. We talked about why I hesitate on a G-tube, about what my concerns were. We talked about Finn's evaluation at the feeding clinic and the lack of follow up by the hospital on that. And then we talked about trying a drug as an appetite stimulant in combination with feeding therapy to see if it would help. I told her that I wanted to make sure we gave everything a fair shot before we went to a G-tube. She agreed and went to talk to the doctor.
The doctor came in and we talked again. We talked about the recommendation to try Periactin (an antihistamine that has a side effect as an appetite stimulant) and she agreed that we could give it a little time. She's giving us two months to be exact. If his weight does not show improvements that she is comfortable with (and I'm not quite sure what that number is going to be) then we will be moving to a G-tube for nightly feeding supplements. The other thing that she said is that because of Finn's history of vomiting, she is not comfortable placing the tube without doing a Nissen fundoplication. This was not something I saw coming and not something that I am entirely comfortable with.
**So, let me back up to explain why we would even consider these recommendations and why this is important. Cystic Fibrosis is not just a pulmonary disease. In fact, if you'll recall, Finn's first symptoms of CF were GI related. CF causes the ducts in the pancreas to get clogged with thick, sticky mucus making it difficult and/or impossible for the body's natural digestive enzymes to make their way to the stomach to digest food. When this happens, patients are diagnosed as being "Pancreatic Insufficient". We know that Finn is severely PI. Because of that he takes man-made digestive enzymes that do not work as well as the body's own and therefore he does not absorb as much of his food as a person who is not PI (or PS--pancreatic sufficient). This also means that he does not absorb vitamins and minerals as well either. He takes a prescription strength vitamin to help with this, as well as has his vitamin levels tested annually to make sure he is getting what he needs. The kicker is that not only does he not absorb as much, but because his body has to work harder to breath, he actually expends more calories than your average person. And finally, because he has CF, he is much more likely to (dare I say, he "will") encounter lung infections which will make it even harder to breath. When people have lung infections, such as pneumonia, their appetites naturally go down, their body works even harder to breath, and they typically lose some weight just from being sick. For a person with CF who has a hard enough time gaining weight as it is, these infections, and the accompanying respiratory therapy that they need to help recover, take a big toll on the body. The CF Foundation has as a standard a goal for every CFer to be at the 50% BMI. This is preventative as well as an indication of respiratory health. The better the BMI the more the body has to work with to fight infections. They say that the better the BMI the better the lungs work. In fact, data actually shows that those with BMI's under the 10% are more likely to contract life-threatening respiratory bacteria and will have a more difficult course with the disease. So, while you all may be looking at pictures of Finn and thinking that he doesn't look emaciated or sickly, try to imagine what he would look like if he were to come down with pneumonia right now. It would NOT be good or pretty. And that is why his 2% BMI is incredibly concerning right now for all of us. And just in case you're thinking that Kai's small and so it's just normal for us, Kai's BMI is at 15%. And yes he is small, but ever since Finn was diagnosed and on the correct medicines he has become the bigger of the two. He is now falling behind Kai's weight curve at this point, but he is still taller. That means he is even leaner than his older brother. So for the first time in a couple of years I might be convinced that CF is affecting Finn's growth and that makes me sad.**
Back to the appointment, we wrapped up knowing that Finn had an appointment the very next day (Tuesday) with the GI doctor and that we wanted to talk about the same issues with her. Our CF doctor said she would speak with our GI doctor after our appointments and then we were to see her back in 2 months to see how the weight gain was or was not going. I won't lie--I went home very, very stressed out.
Tuesday morning we were off to the GI doctor. Thankfully this appointment did not take 2 hours--hallelujah!! (I had both boys with me for both appointments as Kai was still on winter break and they both were going stir crazy at clinic on Monday.) We covered Finn's history between his last appointment with her in August up until this week. She was as encouraged by his stretch from September to December with no vomiting as I was, and we both feel that we may have a good handle on that issue. During the appointment, I don't think she realized that we had not seen her since Finn's gastric emptying study and so we had not really had a good conversation about that. I now have more questions for her about that, that I guess I'll get to save until our next appointment. Anyway, we talked about the G-tube and the Nissen surgery. She thought that Finn's recent vomiting episodes could very well be attributed to his cold and a tummy bug and that she would like to see us give him more time to see if we have another good stretch. While our CF doctor has suggested that we do the G-tube, endoscopy, and Nissen surgery all at one time, the GI doctor thought that it was time we went ahead with the endoscopy before hand so that we could make an accurate decision about the need (or lack thereof) for the Nissen. Also, since we are trying to make a determination on such a large surgery she thought it would be best to do a PH probe on Finn as well. This would involve us admitting him to the hospital for a night of observation. In my book, that's better than a big surgery, so I agree. The only reason that I am slightly nervous goes back to the reason that the CF doctor wanted to do this all at the same time, and that is that Finn needs a high-risk anesthesiologist. There are actually two reasons for this First, anyone with CF is high-risk to begin with when you are talking surgery. We have noticed that Finn tends to respond with inflammation and a cough to anesthesia. Both times he has been under he has woken up sounding much worse than he did before we ever started. And he's young anyway, so he wakes up a complete monster that I can't control or calm down--not fun. Second, we discovered during our time at the hospital last April that Finn has a Class 3 airway making him difficult to intubate. The anesthesiologist who saw him in April was very concerned that I made others aware of this fact because he had quite a difficult time with Finn, requiring repeated attempts and ultimately the aid of something like an ultrasound. So, separating these procedures means that Finn will have to go through this process twice and be intubated twice, which just increases our risks. But I'm trusting this is a better move than doing major surgery if it's unnecessary.
So, after two stressful appointments the plan is as follows--for the next two months we are doing Periactin as an appetite stimulant twice a day and working with the local hospital's feeding clinic. Finn began his medication on Tuesday and will have his first OT session this coming Wednesday. We go back to CF clinic on March 4th. Our check-out sheet this week indicated that the 10% for Finn at this time is 31 pounds. That's a big number for him to reach in two months! I don't know if that's the number they will hold us to or not--we'll see. After that appointment, I anticipate to have Finn's endoscopy and PH probe scheduled for the following week so that we will know what surgeries we're really going to pursue. We then have a GI follow-up at the beginning of April. Our CF doctor indicated that if we do need to place the G-tube she would like to do it in May/June (as to wait for the RSV/Flu season to die down--we don't want him in there healthy and then get exposed). When I pointed out that we would have a new baby at that point she said we could work around that and maybe try for April. For that reason, I'm praying super hard that this periactin and feeding therapy works. I can't imagine trying to sleep in the hospital for a week with Finn recovering from surgery while I'm 9 months pregnant. (Those "couches" are rock-hard!) What's worse is, it's not just a hospital stay but after that we will come with a child who will need to get used to sleeping while being hooked up to machines and nightly feedings. Doing night feedings is tough enough with an infant, add in trying to work a feeding pump that you're trying to get used to. I really, really need this periactin to work and get us through the summer at least!
I'm sorry this is long, but it's been an eventful and slightly tumultuous week here. My right eye has been twitching practically all week long--I'm hoping it's just because I'm stressed. Tomorrow I have to teach my first Young Women's lesson of the new curriculum, so that's something else. Oh, and I've been trying to organize an actual CF fundraiser. But all of that will have to be for another post. If you have a moment to add Finn into your prayers, we would appreciate it. Pray that he can gain the weight he needs and that we'll be guided in how to help him do that. Thanks so much!
Monday we had Finn's quarterly CF clinic visit. I'll admit that I had a list of questions that I wanted to discuss with the doctor, and I was nervous about his weight. I knew it wasn't going to be a great visit, but I didn't expect it to turn into the stress that it did. Finn spent the weekend with a low appetite and occasional vomiting. I wasn't sure if he was all of a sudden dealing with his random tummy issues again or if we had a GI bug. But either way, he wasn't eating and I knew his weight was going to be affected. And I was right. He weighed in at 27.6 pounds. To top it off, he has grown (as evidenced by the fact that his pants are getting short on him) and the nurse measured him at 37.4 inches. (I don't think that's completely accurate. 37 inches would be more accurate) This put his BMI at the 2nd percentile.
The first time a G-tube (a feeding tube surgically inserted into the stomach) was mentioned to me at clinic was last June. The dietitian has been pushing for one for Finn for quite some time, but our doctor has been very understanding and patient. I have had several conversations with her about our natural genetics and that Finn seemed to be doing fine and staying on his own curve--right around 15% BMI. The doctor agreed that as long as he stayed on his curve and did not drop below the 10% BMI mark that we would hold off on the G-tube. As I have processed this and looked at Kai's growth for a pattern and example, I've known that we would eventually fall off of the curve, I just didn't know when it would be. I did not expect it to happen now.
The dietitian came in to see us with Finn's numbers and we talked. We talked about why I hesitate on a G-tube, about what my concerns were. We talked about Finn's evaluation at the feeding clinic and the lack of follow up by the hospital on that. And then we talked about trying a drug as an appetite stimulant in combination with feeding therapy to see if it would help. I told her that I wanted to make sure we gave everything a fair shot before we went to a G-tube. She agreed and went to talk to the doctor.
The doctor came in and we talked again. We talked about the recommendation to try Periactin (an antihistamine that has a side effect as an appetite stimulant) and she agreed that we could give it a little time. She's giving us two months to be exact. If his weight does not show improvements that she is comfortable with (and I'm not quite sure what that number is going to be) then we will be moving to a G-tube for nightly feeding supplements. The other thing that she said is that because of Finn's history of vomiting, she is not comfortable placing the tube without doing a Nissen fundoplication. This was not something I saw coming and not something that I am entirely comfortable with.
**So, let me back up to explain why we would even consider these recommendations and why this is important. Cystic Fibrosis is not just a pulmonary disease. In fact, if you'll recall, Finn's first symptoms of CF were GI related. CF causes the ducts in the pancreas to get clogged with thick, sticky mucus making it difficult and/or impossible for the body's natural digestive enzymes to make their way to the stomach to digest food. When this happens, patients are diagnosed as being "Pancreatic Insufficient". We know that Finn is severely PI. Because of that he takes man-made digestive enzymes that do not work as well as the body's own and therefore he does not absorb as much of his food as a person who is not PI (or PS--pancreatic sufficient). This also means that he does not absorb vitamins and minerals as well either. He takes a prescription strength vitamin to help with this, as well as has his vitamin levels tested annually to make sure he is getting what he needs. The kicker is that not only does he not absorb as much, but because his body has to work harder to breath, he actually expends more calories than your average person. And finally, because he has CF, he is much more likely to (dare I say, he "will") encounter lung infections which will make it even harder to breath. When people have lung infections, such as pneumonia, their appetites naturally go down, their body works even harder to breath, and they typically lose some weight just from being sick. For a person with CF who has a hard enough time gaining weight as it is, these infections, and the accompanying respiratory therapy that they need to help recover, take a big toll on the body. The CF Foundation has as a standard a goal for every CFer to be at the 50% BMI. This is preventative as well as an indication of respiratory health. The better the BMI the more the body has to work with to fight infections. They say that the better the BMI the better the lungs work. In fact, data actually shows that those with BMI's under the 10% are more likely to contract life-threatening respiratory bacteria and will have a more difficult course with the disease. So, while you all may be looking at pictures of Finn and thinking that he doesn't look emaciated or sickly, try to imagine what he would look like if he were to come down with pneumonia right now. It would NOT be good or pretty. And that is why his 2% BMI is incredibly concerning right now for all of us. And just in case you're thinking that Kai's small and so it's just normal for us, Kai's BMI is at 15%. And yes he is small, but ever since Finn was diagnosed and on the correct medicines he has become the bigger of the two. He is now falling behind Kai's weight curve at this point, but he is still taller. That means he is even leaner than his older brother. So for the first time in a couple of years I might be convinced that CF is affecting Finn's growth and that makes me sad.**
Back to the appointment, we wrapped up knowing that Finn had an appointment the very next day (Tuesday) with the GI doctor and that we wanted to talk about the same issues with her. Our CF doctor said she would speak with our GI doctor after our appointments and then we were to see her back in 2 months to see how the weight gain was or was not going. I won't lie--I went home very, very stressed out.
Tuesday morning we were off to the GI doctor. Thankfully this appointment did not take 2 hours--hallelujah!! (I had both boys with me for both appointments as Kai was still on winter break and they both were going stir crazy at clinic on Monday.) We covered Finn's history between his last appointment with her in August up until this week. She was as encouraged by his stretch from September to December with no vomiting as I was, and we both feel that we may have a good handle on that issue. During the appointment, I don't think she realized that we had not seen her since Finn's gastric emptying study and so we had not really had a good conversation about that. I now have more questions for her about that, that I guess I'll get to save until our next appointment. Anyway, we talked about the G-tube and the Nissen surgery. She thought that Finn's recent vomiting episodes could very well be attributed to his cold and a tummy bug and that she would like to see us give him more time to see if we have another good stretch. While our CF doctor has suggested that we do the G-tube, endoscopy, and Nissen surgery all at one time, the GI doctor thought that it was time we went ahead with the endoscopy before hand so that we could make an accurate decision about the need (or lack thereof) for the Nissen. Also, since we are trying to make a determination on such a large surgery she thought it would be best to do a PH probe on Finn as well. This would involve us admitting him to the hospital for a night of observation. In my book, that's better than a big surgery, so I agree. The only reason that I am slightly nervous goes back to the reason that the CF doctor wanted to do this all at the same time, and that is that Finn needs a high-risk anesthesiologist. There are actually two reasons for this First, anyone with CF is high-risk to begin with when you are talking surgery. We have noticed that Finn tends to respond with inflammation and a cough to anesthesia. Both times he has been under he has woken up sounding much worse than he did before we ever started. And he's young anyway, so he wakes up a complete monster that I can't control or calm down--not fun. Second, we discovered during our time at the hospital last April that Finn has a Class 3 airway making him difficult to intubate. The anesthesiologist who saw him in April was very concerned that I made others aware of this fact because he had quite a difficult time with Finn, requiring repeated attempts and ultimately the aid of something like an ultrasound. So, separating these procedures means that Finn will have to go through this process twice and be intubated twice, which just increases our risks. But I'm trusting this is a better move than doing major surgery if it's unnecessary.
So, after two stressful appointments the plan is as follows--for the next two months we are doing Periactin as an appetite stimulant twice a day and working with the local hospital's feeding clinic. Finn began his medication on Tuesday and will have his first OT session this coming Wednesday. We go back to CF clinic on March 4th. Our check-out sheet this week indicated that the 10% for Finn at this time is 31 pounds. That's a big number for him to reach in two months! I don't know if that's the number they will hold us to or not--we'll see. After that appointment, I anticipate to have Finn's endoscopy and PH probe scheduled for the following week so that we will know what surgeries we're really going to pursue. We then have a GI follow-up at the beginning of April. Our CF doctor indicated that if we do need to place the G-tube she would like to do it in May/June (as to wait for the RSV/Flu season to die down--we don't want him in there healthy and then get exposed). When I pointed out that we would have a new baby at that point she said we could work around that and maybe try for April. For that reason, I'm praying super hard that this periactin and feeding therapy works. I can't imagine trying to sleep in the hospital for a week with Finn recovering from surgery while I'm 9 months pregnant. (Those "couches" are rock-hard!) What's worse is, it's not just a hospital stay but after that we will come with a child who will need to get used to sleeping while being hooked up to machines and nightly feedings. Doing night feedings is tough enough with an infant, add in trying to work a feeding pump that you're trying to get used to. I really, really need this periactin to work and get us through the summer at least!
I'm sorry this is long, but it's been an eventful and slightly tumultuous week here. My right eye has been twitching practically all week long--I'm hoping it's just because I'm stressed. Tomorrow I have to teach my first Young Women's lesson of the new curriculum, so that's something else. Oh, and I've been trying to organize an actual CF fundraiser. But all of that will have to be for another post. If you have a moment to add Finn into your prayers, we would appreciate it. Pray that he can gain the weight he needs and that we'll be guided in how to help him do that. Thanks so much!
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