To move or not to move.

[Mommy2Zeke]

Ok... here's my issue. My son has CF and short bowel syndrome. He had necrotizing enterocolitis when he was just 2 months old and lost 90% of his small intestine. He's had loads of surgeries and it got to the point that no one in our home state would touch him because he is such a complex case. We ended up at UNMC Omaha for intestinal rehabilitation treatment and overall it's been very successful. They oversee all of his nutrition. Our local CF team oversees his respiratory issues. We've gone through three CF docs locally. One overtreated with crazy long IV drugs for everything under the sun and had turf issues with docs at UNMC so we dropped him. Second Dr. was great but was only coming to our city while they searched for a CF doc to cover our local CF clinic. Third doctor is who they brought in and trained- (he had never been a CF doctor before).
At first I thought he was ok, but then it became increasingly obvious that the guy wasn't doing his job, nor was he respecting how I wanted my son treated. We would come in and I'd ask about his latest culture, and instead of looking at the last culture we'd had done, he'd pull up the one from 3 months prior and not even bother to look at the date. Then, when I asked to be sure of what my son was growing out (all of which are things he has grown out before with absolutely no symptoms) the doctor insisted on restating protocol and talking over me. I knew protocol and I was NOT questioning it. The latest incident was when I told him some of the medications and methods that doctors at UNMC were using to treat my son's small bowel. Their methods are unorthodox but they are being studied for effect. The doctor visibly rolled his eyes and made some discouraging remarks. In my view, I didn't hire him to oversee any of my son's GI care. Now he is 'wanting to talk to the GI doctor' at UNMC. In addition to that, the nutritionist that came in started make really obvious statements. "Are you aware that his W to H percentages are really low?" No kidding, lady. Where have you been the last 10 months while UNMC doctors and me and my husband have gone to battle to try and get his weight up? We have tried EVERYTHING just short of putting him back on TPN through central line. This nutritionist has seen us ONCE before (she doesn't even come in every visit) and she walks in and seems to start making some sweeping judgements as I explain everything I know to her. I just really rubbed me wrong. I felt like my abilities as a parent were being attacked. It's as though they really think I'm just going along letting my son starve to death or something.
Anyway, the reason we are considering going to UNMC for CF is because my son was treated by Dr. Columbo and his team for several months while we were there for care in the hospital. He and his staff were nothing but wonderful to us. In fact, the whole hospital has been wonderful to us. We already go up every other month to see the Intestial Rehab team. Coordinating a CF visit wouldn't be hard.
Respiratory-wise, my son has been lucky. We eradicated pseudomonas over a year and a half ago. Everything else he has cultured has been minor. He has never been in the hospital for respiratory issues. He's never had pneumonia from anything he has cultured. He's only had three 'flare-ups' that acted like anything from a runny nose to a bit of a head cold and only took him about 2 weeks to get over. We've been very blessed that way. Would you all suggest that I have someone in the state just in case or just go ahead and go with UNMC? BTW... we are looking at moving to Omaha eventually. Currently even though we live 2 states away, our insurance covers them in-network too.

 

[Mommy2Zeke]

Ok... here's my issue. My son has CF and short bowel syndrome. He had necrotizing enterocolitis when he was just 2 months old and lost 90% of his small intestine. He's had loads of surgeries and it got to the point that no one in our home state would touch him because he is such a complex case. We ended up at UNMC Omaha for intestinal rehabilitation treatment and overall it's been very successful. They oversee all of his nutrition. Our local CF team oversees his respiratory issues. We've gone through three CF docs locally. One overtreated with crazy long IV drugs for everything under the sun and had turf issues with docs at UNMC so we dropped him. Second Dr. was great but was only coming to our city while they searched for a CF doc to cover our local CF clinic. Third doctor is who they brought in and trained- (he had never been a CF doctor before).
At first I thought he was ok, but then it became increasingly obvious that the guy wasn't doing his job, nor was he respecting how I wanted my son treated. We would come in and I'd ask about his latest culture, and instead of looking at the last culture we'd had done, he'd pull up the one from 3 months prior and not even bother to look at the date. Then, when I asked to be sure of what my son was growing out (all of which are things he has grown out before with absolutely no symptoms) the doctor insisted on restating protocol and talking over me. I knew protocol and I was NOT questioning it. The latest incident was when I told him some of the medications and methods that doctors at UNMC were using to treat my son's small bowel. Their methods are unorthodox but they are being studied for effect. The doctor visibly rolled his eyes and made some discouraging remarks. In my view, I didn't hire him to oversee any of my son's GI care. Now he is 'wanting to talk to the GI doctor' at UNMC. In addition to that, the nutritionist that came in started make really obvious statements. "Are you aware that his W to H percentages are really low?" No kidding, lady. Where have you been the last 10 months while UNMC doctors and me and my husband have gone to battle to try and get his weight up? We have tried EVERYTHING just short of putting him back on TPN through central line. This nutritionist has seen us ONCE before (she doesn't even come in every visit) and she walks in and seems to start making some sweeping judgements as I explain everything I know to her. I just really rubbed me wrong. I felt like my abilities as a parent were being attacked. It's as though they really think I'm just going along letting my son starve to death or something.
Anyway, the reason we are considering going to UNMC for CF is because my son was treated by Dr. Columbo and his team for several months while we were there for care in the hospital. He and his staff were nothing but wonderful to us. In fact, the whole hospital has been wonderful to us. We already go up every other month to see the Intestial Rehab team. Coordinating a CF visit wouldn't be hard.
Respiratory-wise, my son has been lucky. We eradicated pseudomonas over a year and a half ago. Everything else he has cultured has been minor. He has never been in the hospital for respiratory issues. He's never had pneumonia from anything he has cultured. He's only had three 'flare-ups' that acted like anything from a runny nose to a bit of a head cold and only took him about 2 weeks to get over. We've been very blessed that way. Would you all suggest that I have someone in the state just in case or just go ahead and go with UNMC? BTW... we are looking at moving to Omaha eventually. Currently even though we live 2 states away, our insurance covers them in-network too.

 

[Ratatosk]

If you're pleased with the care you're receiving at UNMC, IMO by all means see them for CF care. We had similar issues with our local CF clinic, so we stayed with the doctor in the City, 250 miles away, who treated DS from the beginning. He's only a phone call away, so if issues arise he can usually call in a prescription. We see one of the local CF doctors as DS' pediatrician -- well child visits, vaccinations and labs are done locally and info forwarded on to our primary CF doctor in the city.

Our local nutrition and gi visits were pretty much worthless. Questioned the extra calorie formula and extra calories or pushed pregistimil formula, something DS refused to eat. We struggled to maintain a 50th percentile and local cf appointments ended up dealing with egos, scare tactics and lectures on everything we were doing wrong.

 

[Ratatosk]

If you're pleased with the care you're receiving at UNMC, IMO by all means see them for CF care. We had similar issues with our local CF clinic, so we stayed with the doctor in the City, 250 miles away, who treated DS from the beginning. He's only a phone call away, so if issues arise he can usually call in a prescription. We see one of the local CF doctors as DS' pediatrician -- well child visits, vaccinations and labs are done locally and info forwarded on to our primary CF doctor in the city.

Our local nutrition and gi visits were pretty much worthless. Questioned the extra calorie formula and extra calories or pushed pregistimil formula, something DS refused to eat. We struggled to maintain a 50th percentile and local cf appointments ended up dealing with egos, scare tactics and lectures on everything we were doing wrong.

 

[Mommy2Zeke]

My son is currently at the 5th percentile from the 25th percentile (where he stayed most of the time). It would be fine if he hadn't shot up so much in height, but his weight has remained the same for 10 months now despite gaining a couple of inches in height. We've tried adding things into his diet, taking things out, adding sodium bicarb, calcium carb, extra vitamins, playing with feedings through his g-tube... bolus feeds, breaking feedings into small increments, changing formula... you name it, we've tried it.
I just got the distinct impression that this dr. somehow thought I didn't notice or care that my son was dropping off the charts. My attitude is "I'm aware, but that's none of your business and not what I hired you for. Now pay attention to the cultures, please!"My husband is actually concerned that this doctor might try doing something stupid like reporting us to DHS or something. Not like they would find anything other than what it's like to keep up with 13 medications a day and trying everything to get a kid to eat and put on weight.... but still. It's worrying.
I love my son and I'd do anything for him and it's an affront to me for anyone to say otherwise.

 

[Mommy2Zeke]

My son is currently at the 5th percentile from the 25th percentile (where he stayed most of the time). It would be fine if he hadn't shot up so much in height, but his weight has remained the same for 10 months now despite gaining a couple of inches in height. We've tried adding things into his diet, taking things out, adding sodium bicarb, calcium carb, extra vitamins, playing with feedings through his g-tube... bolus feeds, breaking feedings into small increments, changing formula... you name it, we've tried it.
I just got the distinct impression that this dr. somehow thought I didn't notice or care that my son was dropping off the charts. My attitude is "I'm aware, but that's none of your business and not what I hired you for. Now pay attention to the cultures, please!"My husband is actually concerned that this doctor might try doing something stupid like reporting us to DHS or something. Not like they would find anything other than what it's like to keep up with 13 medications a day and trying everything to get a kid to eat and put on weight.... but still. It's worrying.
I love my son and I'd do anything for him and it's an affront to me for anyone to say otherwise.

 

[Ratatosk]

A few years ago DS stalled out at his weight, grew a few inches, but his percentile was starting to drop. Switched to a larger enzyme, tried everything to increase his appetite. And the local CF doctor started to lecture us, each appointment he was more and more disappointed with us until finally DH said "What do YOU suggest we do? We can't MAKE him eat". He pretty much stammered... Turns out DS was starting to have issues with adhesions, which eventually led to an obstruction and surgery.
When we still went to the local CF clinic until ds was 2 1/2, I would get so nervous to the point of being physically ill. The lectures, scare tactics, the criticism. they also didn't have very good cross contamination practices and would leave us cooling our heels in the exam room for a LONG time until we'd see anyone. It was torture. I was sooo relieved when we finally made the decision to stop going to the local cf clinic. I was nervous about the change, but it was such a relief.

 

[Ratatosk]

A few years ago DS stalled out at his weight, grew a few inches, but his percentile was starting to drop. Switched to a larger enzyme, tried everything to increase his appetite. And the local CF doctor started to lecture us, each appointment he was more and more disappointed with us until finally DH said "What do YOU suggest we do? We can't MAKE him eat". He pretty much stammered... Turns out DS was starting to have issues with adhesions, which eventually led to an obstruction and surgery.
When we still went to the local CF clinic until ds was 2 1/2, I would get so nervous to the point of being physically ill. The lectures, scare tactics, the criticism. they also didn't have very good cross contamination practices and would leave us cooling our heels in the exam room for a LONG time until we'd see anyone. It was torture. I was sooo relieved when we finally made the decision to stop going to the local cf clinic. I was nervous about the change, but it was such a relief.

 

[triples15]

Hi Jen,

I think we've spoken before but I'm not 100% sure. I'm really sorry to hear about all the trouble you're having with your local CF docs. <img src="i/expressions/face-icon-small-sad.gif" border="0"> Sounds like a mess, and there's nothing worse than being made to feel like you're not taking the best possible care of your child when YOU ARE! And I have absolutely no patience for the "turf issues". They need to get over their ego and do what is best for your little guy. Which in this case means collaborating with other docs. Ugh.

Anyway, I have been treated at UNMC since I was born 31 years ago. I have nothing but good things to say about the pediatric team there. I primarily saw Dr. Sammut but the whole team (Columbo and Thomas) is great. And Stacy (the CF nurse) is wonderful and VERY knowledgeable as well. I'm guessing you met all of them during Zeke's stay there. I feel like I was treated as a part of their family. In fact, I stayed a pediatric patient until I was 29 years old because I did NOT want to leave! I also always felt respected and like my ideas/thoughts about my own care were listened to and taken into consideration. My husband and I have always taken into consideration my CF care when deciding on which jobs he would apply for and how far we would be willing to move and still travel back to UNMC. When I have such great care it would be hard to leave for the unknown!

That being said, I understand that moving is a very tough decision to make. I have never lived in Omaha (we're in Lincoln) but I think Omaha would be a nice place to live. If you are planning on moving eventually anyway, I would maybe suggest making the trip to UNMC for CF clinic in the meantime. In an emergency situation if you needed a doctor closer to home you could fall back on the others. Since Zeke is in fairly good health lung-wise it sounds like you might only be making the trip to Omaha every 3 months until you can get moved.

I think no matter the decision you make, you are a GREAT advocate for your son and you are doing a wonderful job!

 

[triples15]

Hi Jen,

I think we've spoken before but I'm not 100% sure. I'm really sorry to hear about all the trouble you're having with your local CF docs. <img src="i/expressions/face-icon-small-sad.gif" border="0"> Sounds like a mess, and there's nothing worse than being made to feel like you're not taking the best possible care of your child when YOU ARE! And I have absolutely no patience for the "turf issues". They need to get over their ego and do what is best for your little guy. Which in this case means collaborating with other docs. Ugh.

Anyway, I have been treated at UNMC since I was born 31 years ago. I have nothing but good things to say about the pediatric team there. I primarily saw Dr. Sammut but the whole team (Columbo and Thomas) is great. And Stacy (the CF nurse) is wonderful and VERY knowledgeable as well. I'm guessing you met all of them during Zeke's stay there. I feel like I was treated as a part of their family. In fact, I stayed a pediatric patient until I was 29 years old because I did NOT want to leave! I also always felt respected and like my ideas/thoughts about my own care were listened to and taken into consideration. My husband and I have always taken into consideration my CF care when deciding on which jobs he would apply for and how far we would be willing to move and still travel back to UNMC. When I have such great care it would be hard to leave for the unknown!

That being said, I understand that moving is a very tough decision to make. I have never lived in Omaha (we're in Lincoln) but I think Omaha would be a nice place to live. If you are planning on moving eventually anyway, I would maybe suggest making the trip to UNMC for CF clinic in the meantime. In an emergency situation if you needed a doctor closer to home you could fall back on the others. Since Zeke is in fairly good health lung-wise it sounds like you might only be making the trip to Omaha every 3 months until you can get moved.

I think no matter the decision you make, you are a GREAT advocate for your son and you are doing a wonderful job!

 

[Mommy2Zeke]

Love Dr. Sammut too! <img src="i/expressions/face-icon-small-smile.gif" border="0"> Fond memories. He really calmed me down when Zeke was having some issues with lung junk from being intubated post op.
As far as living in Omaha, we are definitely looking at it. I fell in love with the city while there for several months while my son was being treated and going through transplant eval. We also have some distant relatives there who have been wonderful to us and have been great for advice. It would be so much easier having Zeke's docs all in one place. No more 8 hour drives to a 2 hour dr. appt! It would be awesome. And for my son to be treated in a place I have complete confidence in... would be a dream. I've fallen in love with the hospital and staff so much that I would like to pursue PA school at UN. I'm in the beginning steps of pre-reqs and medical experience right now. The only thing we need now is to find my husband a job there. So if you hear of any software engineer jobs in Omaha or Lincoln... Let us know!!!

 

[Mommy2Zeke]

Love Dr. Sammut too! <img src="i/expressions/face-icon-small-smile.gif" border="0"> Fond memories. He really calmed me down when Zeke was having some issues with lung junk from being intubated post op.
As far as living in Omaha, we are definitely looking at it. I fell in love with the city while there for several months while my son was being treated and going through transplant eval. We also have some distant relatives there who have been wonderful to us and have been great for advice. It would be so much easier having Zeke's docs all in one place. No more 8 hour drives to a 2 hour dr. appt! It would be awesome. And for my son to be treated in a place I have complete confidence in... would be a dream. I've fallen in love with the hospital and staff so much that I would like to pursue PA school at UN. I'm in the beginning steps of pre-reqs and medical experience right now. The only thing we need now is to find my husband a job there. So if you hear of any software engineer jobs in Omaha or Lincoln... Let us know!!!

 

[Aboveallislove]

Jen,
I read this last night before going to bed and was tossing and turning steaming and am just boiling now having been thinking of it all morning while taking care of ds and waiting for a moment to respond. What the heck are these doctor's thinking. Can they not for one moment think what it is like to be in our shoes--having all the "normal" baby and toddler issues and then adding to that all the medicines and treatments and for you dear mom the extras of the short-bowel complications. But oh, "mom, you need to get some weight on him." I am so sorry you have to deal with that. I feel "pressure" but nothing like you are describing and it is beyond the pale.

Okay scream over!!! On to your question: I take it you would not be moving but just traveling for his CF appointments, but with the potential for a move. From all you wrote I think it makes the utmost sense. You already are going for his GI stuff and you could try to coordinate CF stuff. And if you eventually move it would be very convenient. A few things to add to the mix: Do you have a good ped there? Is she/he someone who could do a culture if need be? B/C if so, then it would seem so easy--your local ped could work with distance CF doctor for any needed cultures etc. And I would think lung issues would be a little clearer coming on that you would be able to get to the CF Center in the other state if need be for a hospitalization. But since you haven't had that issue yet, you hopefully won't in the near term and by then they'll 1) have a Kalydeco-like drug and it will be a non-issue; or 2) you'll be living there. What do you see as the negatives for the change??

Finally, I wanted to share some thoughts on the feeding stuff. I'm a "convert" to the "division or responsibility" or the "trust method" of eating. I had a ton of issues with our son when he was little, some CF related, some GI related and some mommy-related! If you have never read Ellyn Satter's books--Child of Mine would be the first--maybe try to get at library. She and her team are doing a 3-part webinar on feeding and special needs. I now they are covering CF and I bet also short bowel issues. More details are here: http://?www.ellynsatterinstitute.or?g/cms-assets/documents/?55874-906870.sn-webinar-reg?istr3.26.12.pdf If you want more details on these feeding methods, etc. please PM me. Also, a thought: If you stay at current CF center, you might consider finding a local nutritionist who follows the Satter approach because it is collaberative, not judgmental and you could tell the CF folks you have your own nutritionist and back off!!! I am so sorry you have to deal with these health care "profesionals" in addition to all the worry and stress of taking care of your precious (and adorable) little Zeke.
God Bless

 

[Aboveallislove]

Jen,
I read this last night before going to bed and was tossing and turning steaming and am just boiling now having been thinking of it all morning while taking care of ds and waiting for a moment to respond. What the heck are these doctor's thinking. Can they not for one moment think what it is like to be in our shoes--having all the "normal" baby and toddler issues and then adding to that all the medicines and treatments and for you dear mom the extras of the short-bowel complications. But oh, "mom, you need to get some weight on him." I am so sorry you have to deal with that. I feel "pressure" but nothing like you are describing and it is beyond the pale.

Okay scream over!!! On to your question: I take it you would not be moving but just traveling for his CF appointments, but with the potential for a move. From all you wrote I think it makes the utmost sense. You already are going for his GI stuff and you could try to coordinate CF stuff. And if you eventually move it would be very convenient. A few things to add to the mix: Do you have a good ped there? Is she/he someone who could do a culture if need be? B/C if so, then it would seem so easy--your local ped could work with distance CF doctor for any needed cultures etc. And I would think lung issues would be a little clearer coming on that you would be able to get to the CF Center in the other state if need be for a hospitalization. But since you haven't had that issue yet, you hopefully won't in the near term and by then they'll 1) have a Kalydeco-like drug and it will be a non-issue; or 2) you'll be living there. What do you see as the negatives for the change??

Finally, I wanted to share some thoughts on the feeding stuff. I'm a "convert" to the "division or responsibility" or the "trust method" of eating. I had a ton of issues with our son when he was little, some CF related, some GI related and some mommy-related! If you have never read Ellyn Satter's books--Child of Mine would be the first--maybe try to get at library. She and her team are doing a 3-part webinar on feeding and special needs. I now they are covering CF and I bet also short bowel issues. More details are here: http://?www.ellynsatterinstitute.or?g/cms-assets/documents/?55874-906870.sn-webinar-reg?istr3.26.12.pdf If you want more details on these feeding methods, etc. please PM me. Also, a thought: If you stay at current CF center, you might consider finding a local nutritionist who follows the Satter approach because it is collaberative, not judgmental and you could tell the CF folks you have your own nutritionist and back off!!! I am so sorry you have to deal with these health care "profesionals" in addition to all the worry and stress of taking care of your precious (and adorable) little Zeke.
God Bless

 

[Printer]

I recently changed CF Centers but both Centers are in my city. I understand your frustration.

My guess is that, no matter how good or bad your local CF Doctor is, you will never be happy there.

Go ahead and make the change and have both CF Doctors "under one roof".

Bill

 

[Printer]

I recently changed CF Centers but both Centers are in my city. I understand your frustration.

My guess is that, no matter how good or bad your local CF Doctor is, you will never be happy there.

Go ahead and make the change and have both CF Doctors "under one roof".

Bill

 

[JennyCoulon]

Both of my boys who are 12 and 7 are seen by the UNMC Pulmonary team and have been since birth. They are great to work with and really seem to be on top of the latest things. We now see them at the Children's Speciality Clinic by Children's Hospital and not at the UNMC Hospital which was a little different to get used to. It isn't always easy to find good care so I would definantely switch to them especially with the problems you have had with your previous dr. Good luck.

 

[JennyCoulon]

Both of my boys who are 12 and 7 are seen by the UNMC Pulmonary team and have been since birth. They are great to work with and really seem to be on top of the latest things. We now see them at the Children's Speciality Clinic by Children's Hospital and not at the UNMC Hospital which was a little different to get used to. It isn't always easy to find good care so I would definantely switch to them especially with the problems you have had with your previous dr. Good luck.

 

[rose2wood]

My son, Jordan, is 22 years old now. From the time of dx, 4 yrs old, to age 14 things were good at our Local CF center. When his lungs and weight started to decline, despite frequent clean outs and nutrition advise he did not improve. Grasping at straws they suggested Nissan Fundleplication, g-tube (feedings) huge huge mistake. After surgery and no improvement, the doctors decided it was "Jordan" that was responsible for his decline. It was during a hospital stay that Jordan finally could not deal with the attitude any longer. He called me and said, Mom, I am checking out of this hospital and going to go to another CF center. If I dont I will die soon. I was so worried about his decision. It has been 2 years since his decision to switch and we LOVE the doctors Dayton Childrens Hospital and Miami Valley Hospital in Ohio. They treat him as a person and do not blame him for when he gets ill. Soon after he switched centers he was referred to the Cleveland Clinic for lung transplant eval. He has an appointment with a surgeon to reverse his nissan fundleplication. He has been miserable for the past 4 years, it did not increase his lung function or weight. It actually got worse, he wretches all day long, developed glutin allergy, it goes on and on. My advise to you is, change doctors if you are unhappy. This is a life long commitment and our children come first. I am sure all of Jordans charts say "neurotic mom". Good Luck!

 

[rose2wood]

My son, Jordan, is 22 years old now. From the time of dx, 4 yrs old, to age 14 things were good at our Local CF center. When his lungs and weight started to decline, despite frequent clean outs and nutrition advise he did not improve. Grasping at straws they suggested Nissan Fundleplication, g-tube (feedings) huge huge mistake. After surgery and no improvement, the doctors decided it was "Jordan" that was responsible for his decline. It was during a hospital stay that Jordan finally could not deal with the attitude any longer. He called me and said, Mom, I am checking out of this hospital and going to go to another CF center. If I dont I will die soon. I was so worried about his decision. It has been 2 years since his decision to switch and we LOVE the doctors Dayton Childrens Hospital and Miami Valley Hospital in Ohio. They treat him as a person and do not blame him for when he gets ill. Soon after he switched centers he was referred to the Cleveland Clinic for lung transplant eval. He has an appointment with a surgeon to reverse his nissan fundleplication. He has been miserable for the past 4 years, it did not increase his lung function or weight. It actually got worse, he wretches all day long, developed glutin allergy, it goes on and on. My advise to you is, change doctors if you are unhappy. This is a life long commitment and our children come first. I am sure all of Jordans charts say "neurotic mom". Good Luck!