- I receive a phone call from such and such department saying there is a referral for The Chubs and to call and set up an appointment. I make the call, give her name, date of birth, home address, etc, and they look her up. "What are we seeing her for?" Is always the question that follows. YOU TELL ME! You called me and said you received a referral! I dig through paperwork I've received to figure out why the heck she IS being seen because I can't keep them all straight! I finally find it and tell them and then I hear "Hmmm, it doesn't mention that here." This is where I go crazy. Seriously?!?!
- The previous annoyance almost rivals my frustrations with an office that makes you fill out 15 pages of lengthy information regarding why you are seeing the doctor, all to have the doctor walk in to the appointment without even GLANCING at the paper and asking you all over to repeat in verbal form everything you just spent 20 minutes trying to write out on their in-depth questionnaire.
- My daughter is almost 9 months old. We scheduled a GI appointment for her back when she was 5 1/2 months and have only been able to get in to see the GI ONCE. This means we have spent almost half of her life waiting on care that she really needs. I understand that Children's Hospital is busy, but when a child is not eating well and is already off the charts small, it seems like it should maybe be a little more urgent.
- Conflicting opinions drive me nuts. We have seen so many doctors and they all have a different idea of how to handle things.
- Drastic measures seem to be common at Children's Hospital. This was our experience in the NICU. There was no possible way my daughter just had something "simple" like reflux. She either had a stroke in the womb, meningitis, encephalitis, and was most definitely having seizures. WRONG! It was "just" reflux, so forgive me if when I have big scary procedures and diagnoses thrown at me left and right, I tune you out. I'm tired of the scare tactics. Let's have a little hope for a change.
Showing posts with label doctors I'd like to smack. Show all posts
Showing posts with label doctors I'd like to smack. Show all posts
Thursday, August 5, 2010
My Medical Rant
With all the appointments I've had to schedule for The Chubs in the last few months, I can honestly say I am royally annoyed with the health care system. Here are several things that have driven me crazy over the last few months:
Wednesday, June 30, 2010
I owe you this much
I know my posts have been few and far between, but I guess I just haven't been in the mood to post. Life has been busy, stressful, perplexing etc. Sometimes I just feel overwhelmed by all the possibilities when it comes to The Chubs and her poor eating habits. We've at least narrowed it down (for the time being) to reflux, but we haven't ruled out additional causes.
Monday we had an appointment with the Genetics department at Children's. Although the doctor was helpful, you don't become a geneticist for your people skills. After inspecting The Chubs thoroughly, including her lady bits, the doctor began referring to her as "him" and "he" for about 5 minutes. I tactfully interjected that "she" had reflux, and I think from then on she got the hint.
Not much came out of that appointment because they are in the process of getting us pre-authorized by insurance to have testing done and until that "little" hurdle is jumped, we can't move forward.
To sum things up, they are testing for any reasons that she may be slow to grow or just small in general. One test would be to see if she has Turner Syndrome or Turner Mosaicism, meaning she would be missing the second X chromosome in all or part of her cells. If that was the case there would be a strong possibility that she would never be able to have kids. It is also possible that she may have some heart or kidney issues (although not necessarily likely since nothing of that sort has been detected up to this point), and would most likely be a short adult (under 5 feet tall). I hope for her sake, she never has to deal with infertility. We hope that if she does have TS, that it is the type where only part of her cells are missing the X chromosome because there would be a chance she would still have normal periods and be able to have children, and may only have the short stature, and none of the other complications.
There are other tests they are going to run but to be honest, I can't remember all of them.
The best thing that came out of the appointment is that she is now 12 lbs. That means she gained over a half ounce every day since her last weigh-in. It makes all my fighting for her to eat every day worth it.
Her body is 1st percentile and her head is 10th percentile. I laughed at that but the nurse said it was important for her head to be that big. They wouldn't want it to be the first percentile. Probably for developmental reasons.
I'm pretty sure she is intolerant to milk protein. We tried adding milk based formula to my breast milk a few weeks ago and she did horribly the next few days. Lots of crying during feedings and refusal after just a half - one ounce of milk. Once we moved back to the soy based formula she went right back to normal again. I'm still not eating dairy for this reason and trying to slowly transition her to the soy based formula exclusively. It will probably be a very slow process because I want to make sure she tolerates it well before I stop pumping. But oh, how ready I am to stop pumping.
Solids are a battle still. I'm still reluctant to even push them because I know she doesn't need them for extra calories yet because she's still small and isn't even drinking that much milk each day to begin with. I look at it as a learning tool though, so that she knows how to eat from a spoon. The frustrating thing is that she knows what to do, she is just very stubborn and will only open her mouth on her terms. I'm sure this is related to reflux and her oral aversions. Never in my life did I think I would have to struggle so much to get my child to eat. I thought if anything, that would be the easy part and that the rest of it would be more challenging. I guess it goes to show that you never know what to expect, no matter how prepared you are to have children.
We have our consult with the surgeon on Friday, then another follow-up with her pedi next wednesday. After that we have our Early Intervention assessment on the 19th, followed by a hearing test (which they require. I have no concerns regarding her hearing), and her GI appointment on August 6th. Our summer will be filled with dr. appointments and tests. My hope was for a summer of camping and swimming lessons, but if all of this leads to a baby with a good appetite that is growing and developing appropriately, then it's all worth it.
Monday we had an appointment with the Genetics department at Children's. Although the doctor was helpful, you don't become a geneticist for your people skills. After inspecting The Chubs thoroughly, including her lady bits, the doctor began referring to her as "him" and "he" for about 5 minutes. I tactfully interjected that "she" had reflux, and I think from then on she got the hint.
Not much came out of that appointment because they are in the process of getting us pre-authorized by insurance to have testing done and until that "little" hurdle is jumped, we can't move forward.
To sum things up, they are testing for any reasons that she may be slow to grow or just small in general. One test would be to see if she has Turner Syndrome or Turner Mosaicism, meaning she would be missing the second X chromosome in all or part of her cells. If that was the case there would be a strong possibility that she would never be able to have kids. It is also possible that she may have some heart or kidney issues (although not necessarily likely since nothing of that sort has been detected up to this point), and would most likely be a short adult (under 5 feet tall). I hope for her sake, she never has to deal with infertility. We hope that if she does have TS, that it is the type where only part of her cells are missing the X chromosome because there would be a chance she would still have normal periods and be able to have children, and may only have the short stature, and none of the other complications.
There are other tests they are going to run but to be honest, I can't remember all of them.
The best thing that came out of the appointment is that she is now 12 lbs. That means she gained over a half ounce every day since her last weigh-in. It makes all my fighting for her to eat every day worth it.
Her body is 1st percentile and her head is 10th percentile. I laughed at that but the nurse said it was important for her head to be that big. They wouldn't want it to be the first percentile. Probably for developmental reasons.
I'm pretty sure she is intolerant to milk protein. We tried adding milk based formula to my breast milk a few weeks ago and she did horribly the next few days. Lots of crying during feedings and refusal after just a half - one ounce of milk. Once we moved back to the soy based formula she went right back to normal again. I'm still not eating dairy for this reason and trying to slowly transition her to the soy based formula exclusively. It will probably be a very slow process because I want to make sure she tolerates it well before I stop pumping. But oh, how ready I am to stop pumping.
Solids are a battle still. I'm still reluctant to even push them because I know she doesn't need them for extra calories yet because she's still small and isn't even drinking that much milk each day to begin with. I look at it as a learning tool though, so that she knows how to eat from a spoon. The frustrating thing is that she knows what to do, she is just very stubborn and will only open her mouth on her terms. I'm sure this is related to reflux and her oral aversions. Never in my life did I think I would have to struggle so much to get my child to eat. I thought if anything, that would be the easy part and that the rest of it would be more challenging. I guess it goes to show that you never know what to expect, no matter how prepared you are to have children.
We have our consult with the surgeon on Friday, then another follow-up with her pedi next wednesday. After that we have our Early Intervention assessment on the 19th, followed by a hearing test (which they require. I have no concerns regarding her hearing), and her GI appointment on August 6th. Our summer will be filled with dr. appointments and tests. My hope was for a summer of camping and swimming lessons, but if all of this leads to a baby with a good appetite that is growing and developing appropriately, then it's all worth it.
Wednesday, May 26, 2010
The Bad Blogger Award, and Update
If there was an award for blog slacking, I would certainly get it. The last several days have been a whirlwind and I have admittedly neglected my blog because I just didn't feel like talking about anything.
After our long GI appointment on Friday, I left feeling discouraged and scared. Scared for my baby's health. Discouraged that I couldn't get her the nourishment she needs. Scared of all the possibilities. Discouraged with the "diagnosis" from the GI specialist. Scared of overlooking something serious that may be causing her lack of interest in food. The weekend was hard, mulling over the possibilities. I can't even begin to describe the stress of trying to get The Chubs to eat her daily quota each day, especially when I am the one feeding her almost all day long. 30-40 minute feeding sessions mean that there is very little time for her to play before she's tired and ready for another nap, and also mean that I spend 4.5 hours a day trying to shove a bottle nipple into her mouth.
Monday was her 6 month appointment. I went back and forth about postponing her immunizations because of everything that was going on, but resolved that we should just get them over with and have a blessed 6 months of no shots ahead of us. One saving grace is that she did absolutely wonderfully with them this time. Not much crying at all. Daddy was even able to make her smile immediately afterward. She also didn't have any fussy episodes afterward and hasn't shown any discomfort since. The appointment itself was bittersweet. The Chubs now weighs 10 lbs. 14 oz and is about 23 1/4" long. Still less than the 3rd percentile. She is showing delays in some areas developmentally. On the other hand she is extremely advanced in the social/communication area. I kind of knew that would be the case considering how much she loves people and interacting with them. It was hard to hear about the other delays but the GI doctor has mentioned that her poor eating could be causing some delays because obviously babies need food to grow and develop. Once she starts getting back on track with her eating, she should catch up. For now, we're having a physical therapist through the early intervention program come to our house to help The Chubs with her upper body strength and some other areas where she's lagging.
She had a upper GI X-Ray yesterday and everything looked structurally normal and fine. Her feeding evaluation was good. The Occupational Therapist said she was demonstrating all the classic signs of reflux. So now I'm not sure where we go from here. She's already on a higher dose of prevacid that should be taking care of that, but the OT said that sometimes babies need to be on two medications to treat it. If this is what is actually the issue, I can see why she isn't wanting to eat more. If she does have terrible reflux, she comes about it honestly. Both I and my husband have or have had reflux. I struggled with reflux for years. It is definitely not a pleasant condition and can completely wipe out your appetite.
So now, more waiting. Her weight needs to be monitored every other week so we have another pediatrician appointment on the 7th. The next series of tests will be at the Genetics and Metabolics department at Children's at the end of June.
What I haven't mentioned but you could probably just as well guess, is how stressful all the testing has been. I've literally fought back tears at nearly all of her appointments. At the Upper GI X-Ray they had her laying on her back and were forcing barium down her throat to the point where she was gagging on it. I was about to lay into the lady holding the bottle, as The Chubs screamed through gurgles and coughs. When they drew blood to test for allergies I almost passed out. Not because of the blood or the needle, but because I was so nervous about how The Chubs was going to do with it. When they attached a urine back to her, I felt so bad for her. It looked so uncomfortable squished in her diaper. The bottom line is I'm just not good at this. I hope I never have to attend another appointment alone again. If for any other reason than to have someone to restrain me from lashing out on the doctor(s).
The best thing that has come out of this situation so far is seeing the little muffin in a hospital gown. It was the tiniest little gown I'd ever seen in my life and I have to say, she looked quite cute in it.
After our long GI appointment on Friday, I left feeling discouraged and scared. Scared for my baby's health. Discouraged that I couldn't get her the nourishment she needs. Scared of all the possibilities. Discouraged with the "diagnosis" from the GI specialist. Scared of overlooking something serious that may be causing her lack of interest in food. The weekend was hard, mulling over the possibilities. I can't even begin to describe the stress of trying to get The Chubs to eat her daily quota each day, especially when I am the one feeding her almost all day long. 30-40 minute feeding sessions mean that there is very little time for her to play before she's tired and ready for another nap, and also mean that I spend 4.5 hours a day trying to shove a bottle nipple into her mouth.
Monday was her 6 month appointment. I went back and forth about postponing her immunizations because of everything that was going on, but resolved that we should just get them over with and have a blessed 6 months of no shots ahead of us. One saving grace is that she did absolutely wonderfully with them this time. Not much crying at all. Daddy was even able to make her smile immediately afterward. She also didn't have any fussy episodes afterward and hasn't shown any discomfort since. The appointment itself was bittersweet. The Chubs now weighs 10 lbs. 14 oz and is about 23 1/4" long. Still less than the 3rd percentile. She is showing delays in some areas developmentally. On the other hand she is extremely advanced in the social/communication area. I kind of knew that would be the case considering how much she loves people and interacting with them. It was hard to hear about the other delays but the GI doctor has mentioned that her poor eating could be causing some delays because obviously babies need food to grow and develop. Once she starts getting back on track with her eating, she should catch up. For now, we're having a physical therapist through the early intervention program come to our house to help The Chubs with her upper body strength and some other areas where she's lagging.
She had a upper GI X-Ray yesterday and everything looked structurally normal and fine. Her feeding evaluation was good. The Occupational Therapist said she was demonstrating all the classic signs of reflux. So now I'm not sure where we go from here. She's already on a higher dose of prevacid that should be taking care of that, but the OT said that sometimes babies need to be on two medications to treat it. If this is what is actually the issue, I can see why she isn't wanting to eat more. If she does have terrible reflux, she comes about it honestly. Both I and my husband have or have had reflux. I struggled with reflux for years. It is definitely not a pleasant condition and can completely wipe out your appetite.
So now, more waiting. Her weight needs to be monitored every other week so we have another pediatrician appointment on the 7th. The next series of tests will be at the Genetics and Metabolics department at Children's at the end of June.
What I haven't mentioned but you could probably just as well guess, is how stressful all the testing has been. I've literally fought back tears at nearly all of her appointments. At the Upper GI X-Ray they had her laying on her back and were forcing barium down her throat to the point where she was gagging on it. I was about to lay into the lady holding the bottle, as The Chubs screamed through gurgles and coughs. When they drew blood to test for allergies I almost passed out. Not because of the blood or the needle, but because I was so nervous about how The Chubs was going to do with it. When they attached a urine back to her, I felt so bad for her. It looked so uncomfortable squished in her diaper. The bottom line is I'm just not good at this. I hope I never have to attend another appointment alone again. If for any other reason than to have someone to restrain me from lashing out on the doctor(s).
The best thing that has come out of this situation so far is seeing the little muffin in a hospital gown. It was the tiniest little gown I'd ever seen in my life and I have to say, she looked quite cute in it.
Subscribe to:
Comments (Atom)
