I'm at a loss as to what to do with Kara. I'm going to call the GI doctor tomorrow. At this point, nothing is working and it's so tough to just NOT feed her the food that she wants. She knows she's missing out and she's miserable. It's heart breaking having to sneak bites of food around her because if she catches you eating, she'll want some too. It's heart breaking to have to tell your three year old she can't have something because Kara can't have it. It's heart breaking having your baby cry and cry and not be able to soothe her even though you know what's wrong.
We went to carrots today because I was almost positive those were going to be a safe food after doing 4(?) 5(?) days of apples and not having a definite yes or no. She had a horrible, horrible diaper tonight. As some know, we are in the process of gutting our kitchen, so I had the girls upstairs playing. Brenna came downstairs and said "Mom, Kara's really fussy and wiggling her butt. I think she pooped." I knew what this meant so I ran upstairs, grabbed her and yelled for Brian to meet me to help out. I laid her down and she was already screaming. I cleaned her up as he held her hands and tried to comfort her. Her butt was so raw it was bleeding. It happened that fast. This diaper also had undigested food in it, again - this is a problem I've been noticing more and more lately and I'm not sure what to think about it. They were steamed carrots, it's not like it was corn, or anything raw!
She was so fussy, pretty much from the time I got her home from daycare. She just cried and cried. I was trying to pack bags up for us to move to the in-laws for a few days since our house is a disaster area right now but Kara wasn't allowing that. I tried to rock her, she cried, I tried to feed her some plain barley with Neocate and she cried, it didn't seem to matter what I did. I finally left, figuring I'd run home later and get what I needed. We gave the girls baths tonight and Kara was so excited to have her bath at Grandma's house. I stood her up in the tub, waiting for her to sit down. She cautiously did and she slowly sat down but the minute her little butt hit the water it was instant tears. She kept trying but you could tell that it was so painful. I just want to cry right along with her as she's going through all of this.
At this point I don't know if this is FPIES or if she has something else going on in her digestive system. Hopefully the GI Dr has some sort of answer for us, or will want us back down there to do some more testing. I sent in her occult blood test yesterday, they'll test it tomorrow and then I suppose we'll wait for the Dr to get back to us with the results. I'm not sure what the heck else to do.
Wednesday, August 11, 2010
Monday, August 9, 2010
Thoughts
With this new elimination diet and the food challenges that we are starting, I feel like I have a new baby again, one that we are just starting to introduce foods to. You try a new food for 3 days, try another one, and so on. For some reason, we never picked up on anything specific early on, maybe it's because Kara was always a very poor eater and was pretty much dependent on breast milk. Her full blown FPIES reactions were only the 3 times with vomiting to the rice and oat. It's after she stopped nursing that we really started noticing some GI upset going on and that has since increased as she ate more foods.
The last couple days have left me with guilt. I know I can't dwell on the past and we need to move on to get some answers but daily, CONSTANTLY, I'm left feeling like if ONLY that doctor would have listened to our story last January, we wouldn't be in the place we are now. We'd have control over this situation. We'd have specific answers in what she can and can't have. Instead he told me that I NEED to feed her something besides breast milk and when she's screaming in her high chair and won't eat, I can't just give in and "offer her my breast". It makes me sick to think back on that day. We were creating "food aversions" in her, I was told. Kara definitely did have her share of food aversions and still does but we got through them. We had our paperwork going for the feeding clinic but she started doing better with accepting food so decided not to go and we've gotten through it.
We have a pretty hefty bill down at MN Gastro. They are a tier 2 with our insurance company which really sucks so we are working towards an entirely different out of pocket/deductible. This is the same with St. Cloud and our other specialists. Our bills are going to be enormous but we can't put a price on Kara's care. When our allergist told us at our first allergy appointment a little over a month ago that Kara definitely has FPIES, we talked about our still lingering gastro bill. I deal with patients, their bills and their complaints daily in my job and the last thing I wanted to be was one of "those" people who complain so I left this ball in Brian's court. He called down there and told the billing rep our story. About a week later, the day I was frustrated with Kara being broken out in unexplainable hives, the patient advocate called me to get my part of the story. We had heard nothing back and haven't thought too much about it until today, when we received a letter in the mail. This letter states " I apologize that we did not meet your expectations and as a customer service gesture, we will write off the balance of your account..." This was SO awesome to get in the mail today. It doesn't make things ok considering we could be 6 months ahead of schedule with her care but it's certainly a help. Now if only we could get these tummy aches under control and get some more ok foods besides Neocate and barley, things would be awesome. Oh, and write off the rest of these medical bills... :) Our care has been awesome at St. Cloud and there are no complaints there. I'll take that any day!
The last couple days have left me with guilt. I know I can't dwell on the past and we need to move on to get some answers but daily, CONSTANTLY, I'm left feeling like if ONLY that doctor would have listened to our story last January, we wouldn't be in the place we are now. We'd have control over this situation. We'd have specific answers in what she can and can't have. Instead he told me that I NEED to feed her something besides breast milk and when she's screaming in her high chair and won't eat, I can't just give in and "offer her my breast". It makes me sick to think back on that day. We were creating "food aversions" in her, I was told. Kara definitely did have her share of food aversions and still does but we got through them. We had our paperwork going for the feeding clinic but she started doing better with accepting food so decided not to go and we've gotten through it.
We have a pretty hefty bill down at MN Gastro. They are a tier 2 with our insurance company which really sucks so we are working towards an entirely different out of pocket/deductible. This is the same with St. Cloud and our other specialists. Our bills are going to be enormous but we can't put a price on Kara's care. When our allergist told us at our first allergy appointment a little over a month ago that Kara definitely has FPIES, we talked about our still lingering gastro bill. I deal with patients, their bills and their complaints daily in my job and the last thing I wanted to be was one of "those" people who complain so I left this ball in Brian's court. He called down there and told the billing rep our story. About a week later, the day I was frustrated with Kara being broken out in unexplainable hives, the patient advocate called me to get my part of the story. We had heard nothing back and haven't thought too much about it until today, when we received a letter in the mail. This letter states " I apologize that we did not meet your expectations and as a customer service gesture, we will write off the balance of your account..." This was SO awesome to get in the mail today. It doesn't make things ok considering we could be 6 months ahead of schedule with her care but it's certainly a help. Now if only we could get these tummy aches under control and get some more ok foods besides Neocate and barley, things would be awesome. Oh, and write off the rest of these medical bills... :) Our care has been awesome at St. Cloud and there are no complaints there. I'll take that any day!
Sunday, August 8, 2010
Apple Fail?
Here we are on day 2 of the restricted diet and I have a gut feeling that she is going to be failing our first food challenge.
We decided to do apples to start because they are a pretty common food around our house - sippies of apple juice and water for big sister as well as for Kara, apple sauce with supper, or in her barley. In the last month I started questioning if it could possibly be the apples that weren't working in her diet, that's when I decided to start here.
Kara has not had much of an appetite at all the last few days so it's been difficult to get her to eat or drink much of anything. Her diet yesterday consisted of Neocate, barley, dehydrated apple pieces and applesauce. She did have a few bites of corn on the cob as well, because I'm 99% sure that corn is a safe food for her. She seemed to do fine with this.
Brian got up with her this morning and changed her diaper. He got me up because he wanted me to look at it. It definitely didn't look too good and was definitely loose - pretty familiar, actually, and very foul. But, this isn't entirely abnormal for her either. I got a sample of it for day 2 of the occult blood test - I'm sort of starting to think that there is blood in it as well.
We did barley and applesauce again for breakfast which she refused but she did drink a 6 oz bottle. As a snack I cut up apple pieces for her and big sister to eat. She took a few bites of that and threw them on the floor. I gave her the rest of her barley and applesauce which she ate ok. She started to get so fussy so we tried another bottle with no luck. She was really fussy, acting like she was tired so we put her in the crib. She cried and cried in the crib so Brian went and got her. She had another dirty diaper. Dang. Maybe she's failing the apples, maybe not, I just can't be sure yet. We finally got her down for a nap and I'm listening to her pretty restless on the monitor right now. I'm not sure if I should keep going with this or call it a fail, it's really minor so far, if it is a fail. I guess we'll see how the evening goes.
We decided to do apples to start because they are a pretty common food around our house - sippies of apple juice and water for big sister as well as for Kara, apple sauce with supper, or in her barley. In the last month I started questioning if it could possibly be the apples that weren't working in her diet, that's when I decided to start here.
Kara has not had much of an appetite at all the last few days so it's been difficult to get her to eat or drink much of anything. Her diet yesterday consisted of Neocate, barley, dehydrated apple pieces and applesauce. She did have a few bites of corn on the cob as well, because I'm 99% sure that corn is a safe food for her. She seemed to do fine with this.
Brian got up with her this morning and changed her diaper. He got me up because he wanted me to look at it. It definitely didn't look too good and was definitely loose - pretty familiar, actually, and very foul. But, this isn't entirely abnormal for her either. I got a sample of it for day 2 of the occult blood test - I'm sort of starting to think that there is blood in it as well.
We did barley and applesauce again for breakfast which she refused but she did drink a 6 oz bottle. As a snack I cut up apple pieces for her and big sister to eat. She took a few bites of that and threw them on the floor. I gave her the rest of her barley and applesauce which she ate ok. She started to get so fussy so we tried another bottle with no luck. She was really fussy, acting like she was tired so we put her in the crib. She cried and cried in the crib so Brian went and got her. She had another dirty diaper. Dang. Maybe she's failing the apples, maybe not, I just can't be sure yet. We finally got her down for a nap and I'm listening to her pretty restless on the monitor right now. I'm not sure if I should keep going with this or call it a fail, it's really minor so far, if it is a fail. I guess we'll see how the evening goes.
Friday, August 6, 2010
Gastro Appointment
Wow, what a day, but a good one at that.
We got to CentraCare and got checked in, but we were 20 minutes early. Perfect time for Kara to run around after our car ride. The nurse came out and asked for Kara's parents. Uh-oh. I thought "if they think they are sending us home for any reason, they are CRAZY!" She said Dr. S. was running far behind, she had a patient that was taking them quite a bit longer than anticipated. We joked that she'd be running even later after seeing us! She suggested we run and get a bite to eat which was no problem, our appt was at 11:2o and we hadn't eaten yet, so we ran to the deli at the clinic. Shortly after, we were called. On our way into the exam room, Brian said the doctor poked her head out and apologized for running late. Wow. At the time we were roomed, it was only 20 minutes later than our appt time was! The nurse did her thing and within minutes Dr. S. was in to see us. She walked in, again apologizing and Brian joked with her - "no problem, as long as you give us some answers with our daughter!" She couldn't promise us that! :)
Have I ever mentioned how impressed I am with this place? We have had nothing but good experiences here so far! Dr. S. started by asking us why we were here. After a week of that question going through my head, I answered her by saying "Kara has been recently diagnosed with FPIES after months of questioning. We are struggling with this and she's still not "right" so I guess I'd like to start all over and see what we come up with." With that, she listened to our story and asked questions as needed.
Some of the questions were really hard to answer since it's all about her random reactions that we can't figure out the trigger for. (this is going to get kind of icky but what do you expect, it's a blog about digestive problems and a visit to the gastroenterologist!) We were asked specific questions about her dirty diapers. I explained that in the last few days, I realized that I should really be LOOKING at them to make sure things are ok. All I could think about was getting her arms held down by my legs as I change her as quickly as possible, get medicine on her bottom and keep her hands out of there! I told her it's quite a task that normally takes two people to complete! She understood this completely. I told her the smell of these diapers is disgusting and "not right". I told the story of a night not too long ago that I got to the bottom of the stairs to rescue my screaming baby and could smell it from there. After some review, she decided to do the 3 day test for blood in her stool and go from there.
After much discussion and a brief, painless examination, she decided that we are going to start at square one with Kara. Basically, we have no clue what is causing these random reactions. She's now on day 3 of good days but what was it - the chicken? the peas? the beans? something completely random each time? We haven't had good control over this because of the lack of direction. It seems so simple and it's definitely been on my mind this week - Start over - let's just do the formula and see if we can get things under control. I've read about "baseline" in other blogs and message boards and now that we got some direction from the doctor, I'm thinking that's what this means. We are to make three lists. The YES list, the NO list and the MAYBE list. To begin with, the NO list is the rice, oat and dairy. The foods that she's had the shock reaction to, and the dairy being an IgE allergy for her. We are struggling with the YES list. So far I have barley, bananas and neocate on it. The rest I'm up in the air. There are a lot of maybes that I think would be a yes but we better leave them in that maybe column for now. I've been questioning apples - something she's had often but she's also had icky diapers often. She's had beef and pork recently and done decent on it but is it an actual YES? Some of these reactions don't happen until the 3rd, even 4th time of having them. Maybe we'd be better off doing the barley with Neocate and starting there. Either way, this is NOT going to be fun because she knows when she's missing out. I feel like to be fair, we need to not eat anything in front of her. Does she know the difference? It's so tough!
Dr. S. explained that FPIES is a fairly new diagnosis in the last few years, and basically a term for multiple food allergies for now. She's not going to put this dx on Kara quite yet. In doing these food challenges we are going to find out if it's reactions or if she has something completely different all together, or on top of the FPIES. Because of her textbook reactions to the rice and oat, I'm pretty sure she does have the FPIES but the fact that we can't get her back to "normal" (whatever that is) is making us question other things as well. We go back to see the doctor in one month. If we have any problems or are not having success with any foods that we challenge, we will see her before then at the U. If anything comes out of the stool test, we'll be seen sooner as well. We talked about scoping her and at this point she wants to see what happens with the food challenges but if the blood test comes back positive then she'll be scoped right away, the same if we continue having problems.
I asked her what she thought about the chicken, peas and beans. Should those be in the NO column or can we put those in the maybe since we don't know which one it is? She said we can put them in the maybe but at the bottom. (if we ever get to the bottom!) She said the same thing with eggs, since she's only had those the one time. Put them towards the bottom and just be really cautious with them - maybe just give her a half of an egg to see what happens.
All in all, I was very pleased and felt good leaving there. We have a long month in front of us with these food challenges but we'll do what it takes to get some answers for Kara. She's calling me from her crib - it's 8:30 and she's just waking up. Yesterday must have been a long day for her!
We got to CentraCare and got checked in, but we were 20 minutes early. Perfect time for Kara to run around after our car ride. The nurse came out and asked for Kara's parents. Uh-oh. I thought "if they think they are sending us home for any reason, they are CRAZY!" She said Dr. S. was running far behind, she had a patient that was taking them quite a bit longer than anticipated. We joked that she'd be running even later after seeing us! She suggested we run and get a bite to eat which was no problem, our appt was at 11:2o and we hadn't eaten yet, so we ran to the deli at the clinic. Shortly after, we were called. On our way into the exam room, Brian said the doctor poked her head out and apologized for running late. Wow. At the time we were roomed, it was only 20 minutes later than our appt time was! The nurse did her thing and within minutes Dr. S. was in to see us. She walked in, again apologizing and Brian joked with her - "no problem, as long as you give us some answers with our daughter!" She couldn't promise us that! :)
Have I ever mentioned how impressed I am with this place? We have had nothing but good experiences here so far! Dr. S. started by asking us why we were here. After a week of that question going through my head, I answered her by saying "Kara has been recently diagnosed with FPIES after months of questioning. We are struggling with this and she's still not "right" so I guess I'd like to start all over and see what we come up with." With that, she listened to our story and asked questions as needed.
Some of the questions were really hard to answer since it's all about her random reactions that we can't figure out the trigger for. (this is going to get kind of icky but what do you expect, it's a blog about digestive problems and a visit to the gastroenterologist!) We were asked specific questions about her dirty diapers. I explained that in the last few days, I realized that I should really be LOOKING at them to make sure things are ok. All I could think about was getting her arms held down by my legs as I change her as quickly as possible, get medicine on her bottom and keep her hands out of there! I told her it's quite a task that normally takes two people to complete! She understood this completely. I told her the smell of these diapers is disgusting and "not right". I told the story of a night not too long ago that I got to the bottom of the stairs to rescue my screaming baby and could smell it from there. After some review, she decided to do the 3 day test for blood in her stool and go from there.
After much discussion and a brief, painless examination, she decided that we are going to start at square one with Kara. Basically, we have no clue what is causing these random reactions. She's now on day 3 of good days but what was it - the chicken? the peas? the beans? something completely random each time? We haven't had good control over this because of the lack of direction. It seems so simple and it's definitely been on my mind this week - Start over - let's just do the formula and see if we can get things under control. I've read about "baseline" in other blogs and message boards and now that we got some direction from the doctor, I'm thinking that's what this means. We are to make three lists. The YES list, the NO list and the MAYBE list. To begin with, the NO list is the rice, oat and dairy. The foods that she's had the shock reaction to, and the dairy being an IgE allergy for her. We are struggling with the YES list. So far I have barley, bananas and neocate on it. The rest I'm up in the air. There are a lot of maybes that I think would be a yes but we better leave them in that maybe column for now. I've been questioning apples - something she's had often but she's also had icky diapers often. She's had beef and pork recently and done decent on it but is it an actual YES? Some of these reactions don't happen until the 3rd, even 4th time of having them. Maybe we'd be better off doing the barley with Neocate and starting there. Either way, this is NOT going to be fun because she knows when she's missing out. I feel like to be fair, we need to not eat anything in front of her. Does she know the difference? It's so tough!
Dr. S. explained that FPIES is a fairly new diagnosis in the last few years, and basically a term for multiple food allergies for now. She's not going to put this dx on Kara quite yet. In doing these food challenges we are going to find out if it's reactions or if she has something completely different all together, or on top of the FPIES. Because of her textbook reactions to the rice and oat, I'm pretty sure she does have the FPIES but the fact that we can't get her back to "normal" (whatever that is) is making us question other things as well. We go back to see the doctor in one month. If we have any problems or are not having success with any foods that we challenge, we will see her before then at the U. If anything comes out of the stool test, we'll be seen sooner as well. We talked about scoping her and at this point she wants to see what happens with the food challenges but if the blood test comes back positive then she'll be scoped right away, the same if we continue having problems.
I asked her what she thought about the chicken, peas and beans. Should those be in the NO column or can we put those in the maybe since we don't know which one it is? She said we can put them in the maybe but at the bottom. (if we ever get to the bottom!) She said the same thing with eggs, since she's only had those the one time. Put them towards the bottom and just be really cautious with them - maybe just give her a half of an egg to see what happens.
All in all, I was very pleased and felt good leaving there. We have a long month in front of us with these food challenges but we'll do what it takes to get some answers for Kara. She's calling me from her crib - it's 8:30 and she's just waking up. Yesterday must have been a long day for her!
Wednesday, August 4, 2010
Obsessed
I am becoming obsessed with finding answers for Kara. It's all I think about all day, every day. I'm brainstorming, trying to get to the bottom of what's causing her reactions, and trying to put things together based on other Mom's experiences. I walk in the door from work lately and go straight to the computer and catch up on the FPIES blogs that I follow, check the message boards on the FPIES group that I belong to now and do my facebook thing in between. I hop on the computer every free second that I have, doing new google searches for updated info. I feel like I'm constantly learning yet coming up with nothing. I know my obsession gets frustrating to my family but I am determined to make things right for Kara and feel that I just can't do enough to care for her properly. Everything else is going to have to wait. I'm exhausted yet my mind is running a million miles an hour and I won't stop until we get things figured out for her.
Kara seems to be having a decent week, despite the mommy meltdowns earlier this week. She's actually had a good last two days and I say that hesitantly because two days is about the maximum amount of time that we get for good days with her. She wouldn't drink her bottle last night so I worried about a tummy ache. She was up in the night for quite a while and refused her bottle so I was worried about a tummy ache. She got up this morning and refused her bottle again, so again, I worried about a tummy ache. I brought her to daycare stating she wasn't acting quite right so call me if there are any problems. Kara had a great day, Mommy overreacted. (Go figure!) Tonight she wouldn't eat supper. I caved and gave her a few crackers because I figured it was better than nothing. She drank 4 ounces of a bottle and that was it. I'm nervous something is going on, or starting but I'm trying to stay optimistic. Friday can't get here soon enough!
Kara seems to be having a decent week, despite the mommy meltdowns earlier this week. She's actually had a good last two days and I say that hesitantly because two days is about the maximum amount of time that we get for good days with her. She wouldn't drink her bottle last night so I worried about a tummy ache. She was up in the night for quite a while and refused her bottle so I was worried about a tummy ache. She got up this morning and refused her bottle again, so again, I worried about a tummy ache. I brought her to daycare stating she wasn't acting quite right so call me if there are any problems. Kara had a great day, Mommy overreacted. (Go figure!) Tonight she wouldn't eat supper. I caved and gave her a few crackers because I figured it was better than nothing. She drank 4 ounces of a bottle and that was it. I'm nervous something is going on, or starting but I'm trying to stay optimistic. Friday can't get here soon enough!
Tuesday, August 3, 2010
Better Day!
This afternoon I got a phone call at work from the nurse from the U. She asked me a few questions about Kara, when and where we are being seen and then told me that Kara is seeing the best. She explained that FPIES is a pretty new diagnosis but there are many other things with very similar symptoms that they've treated. She said that this doctor is definitely a good match for what we are dealing with, with Kara. I was overjoyed to hear this! Maybe this will finally be the answer we've been waiting for!
She asked if I had any info about Kara and I explained that I have all of her records from birth. She requested that I fax them to her so she can review them for pertinent information and go over what I had told her with the doctor before we go for our appointment so the doctor will have a better idea of what we are going there for. I got these faxed this evening, all 79 pages of it. I was going through it to see what was pertinent in those 79 pages and each page had something about vomiting, diarrhea, fever, not eating, eczema. I guess everything is!
I got home and filled out the paperwork on family history and concerns that we are to bring with us. My spirits are lifted now and I'm anxious for Friday. Of course, I hung up the phone and felt like I was going to cry again, but this time it was happy tears. I'm praying that we get more answers Friday and this emotional roller coaster will stop, or at least slow down a little bit!
She asked if I had any info about Kara and I explained that I have all of her records from birth. She requested that I fax them to her so she can review them for pertinent information and go over what I had told her with the doctor before we go for our appointment so the doctor will have a better idea of what we are going there for. I got these faxed this evening, all 79 pages of it. I was going through it to see what was pertinent in those 79 pages and each page had something about vomiting, diarrhea, fever, not eating, eczema. I guess everything is!
I got home and filled out the paperwork on family history and concerns that we are to bring with us. My spirits are lifted now and I'm anxious for Friday. Of course, I hung up the phone and felt like I was going to cry again, but this time it was happy tears. I'm praying that we get more answers Friday and this emotional roller coaster will stop, or at least slow down a little bit!
Monday, August 2, 2010
Bad Day!
Today was a bad day. There's no other way to sum things up. Kara has continued to have nasty diapers despite the increase in her forbidden foods. Yesterday we struggled and last night she was inconsolable - she'd lay in arms and scream, I'd put her on the floor, she'd scream, it was just down right awful. Luckily we finally got her to bed shortly before ten and she slept until about 2:30 when she got up for a quick bottle. Have I ever mentioned that I feel like I still have a newborn sometimes? :)
I couldn't sleep last night. Kara and her care ran through my head all night long and it just frustrated me. I couldn't seem to shut anything off. That made for a really rough morning being so stressed out and over tired. We had our typical Monday morning rush of waking up the girls and getting out the door by 7:15. I'm not sure what triggered everything else but I couldn't function once I got to work. I continued thinking about Kara, how nothing has changed, how we still have 5 days til she sees the specialist. I was so tired and it showed. At one point, a friend stopped me on my way to my desk to ask how Kara was doing. I started to talk and then just said I couldn't right now, I was going to lose it. I went to my desk and my eyes welled up with tears. This happened so many times to me today. I finally finished up what needed to be done and left the office at 12:30, at which point I HAD lost it. I had way too much on my mind and phone calls that needed to be made. I left work, not sure what direction to go, home, or for a drive. I called Brian to tell him I was coming home and I lost it. It doesn't seem to matter HOW hard I try to do things right for Kara, we just can't seem to manage to get her symptoms under control. Our allergist wants to see her again in three months. THREE MONTHS. What the heck are we supposed to do for that time? Hope that the GI can figure her out? in THREE MONTHS she'll be EIGHTEEN MONTHS. At what point in this awful "thing" do they really start to worry? I keep thinking that it's not right how they just let us be on our way. What do parents do that aren't knowledgeable, that don't have the support systems that we have? I spend every spare second of my life researching on the internet, reading blogs, reading message boards, trying to figure SOMETHING out that can help my poor baby. How do babies survive when they don't have this group behind them? If I were to play totally dumb, would there be more help for us? There is something wrong here.
I went home, waterworks and all. I decided to get my ipod, hop on the lawn mower and relax. For some strange reason, I LOVE mowing the lawn! It's my therapy! I think it's because it's my alone time, I mow part of our field and jam out to my favorite songs. Brian had one request and that's that I don't sing along. Apparently I've gotten some strange looks belting out the tunes! I let my mind clear, let my eyes clear and then went back inside to tackle my obstacles for the day.
I called the insurance company again to request a case manager. I was questioned quite a bit, put on hold and then the lady came back on and asked me a ton of questions, again, like last time where I'm having to explain everything. THIS is why I want a case manager. ONE person to deal with, who is familiar with our needs instead of having to start over each time I have a question. I held back my tears as I went through our story, my frustrations, and found out that we CAN have a second opinion, we CAN go to any of the "big" hospitals - Children's, the U, Mayo, all of which I figured but wanted to be sure. I was mostly worried about being disappointed again from gastro and wanting to see someone else, only to find out that we aren't able to. They are going to review our case again and I'll hopefully be getting a phone call letting us know they are going to assign one person to us. My fingers are crossed but my hopes aren't that high.
Next I called Fairview GI, the clinic through the U's Children's hospital. (I think, this is all so confusing which group practices at which hospital!) I was able to get to the GI nurses voicemail and left a message. I asked if our doctor that we are seeing on Friday KNOWS about FPIES, and if there are any other GI's in their group that do know about it or see patients because we've really been struggling and if there's someone specific we can see, I'd rather do it that way instead of screwing around the way we have been. I really hope they call me back tomorrow as well. I got off the phone, again, started crying.
What a day this has been. I don't feel good, I'm stressed out, overtired yet can't sleep. Friday's appointment can't come soon enough. I just hope we can start to get somewhere because I'm not sure I can handle too many more obstacles without something positive coming up, first! I'm not quite sure how I'm going to tackle tomorrow either, other than jump right in and hope for the best! Maybe Kara will have whatever "it" was again, out of her system and we'll slide nice and easy through the rest of our week. That would sure be nice.
I couldn't sleep last night. Kara and her care ran through my head all night long and it just frustrated me. I couldn't seem to shut anything off. That made for a really rough morning being so stressed out and over tired. We had our typical Monday morning rush of waking up the girls and getting out the door by 7:15. I'm not sure what triggered everything else but I couldn't function once I got to work. I continued thinking about Kara, how nothing has changed, how we still have 5 days til she sees the specialist. I was so tired and it showed. At one point, a friend stopped me on my way to my desk to ask how Kara was doing. I started to talk and then just said I couldn't right now, I was going to lose it. I went to my desk and my eyes welled up with tears. This happened so many times to me today. I finally finished up what needed to be done and left the office at 12:30, at which point I HAD lost it. I had way too much on my mind and phone calls that needed to be made. I left work, not sure what direction to go, home, or for a drive. I called Brian to tell him I was coming home and I lost it. It doesn't seem to matter HOW hard I try to do things right for Kara, we just can't seem to manage to get her symptoms under control. Our allergist wants to see her again in three months. THREE MONTHS. What the heck are we supposed to do for that time? Hope that the GI can figure her out? in THREE MONTHS she'll be EIGHTEEN MONTHS. At what point in this awful "thing" do they really start to worry? I keep thinking that it's not right how they just let us be on our way. What do parents do that aren't knowledgeable, that don't have the support systems that we have? I spend every spare second of my life researching on the internet, reading blogs, reading message boards, trying to figure SOMETHING out that can help my poor baby. How do babies survive when they don't have this group behind them? If I were to play totally dumb, would there be more help for us? There is something wrong here.
I went home, waterworks and all. I decided to get my ipod, hop on the lawn mower and relax. For some strange reason, I LOVE mowing the lawn! It's my therapy! I think it's because it's my alone time, I mow part of our field and jam out to my favorite songs. Brian had one request and that's that I don't sing along. Apparently I've gotten some strange looks belting out the tunes! I let my mind clear, let my eyes clear and then went back inside to tackle my obstacles for the day.
I called the insurance company again to request a case manager. I was questioned quite a bit, put on hold and then the lady came back on and asked me a ton of questions, again, like last time where I'm having to explain everything. THIS is why I want a case manager. ONE person to deal with, who is familiar with our needs instead of having to start over each time I have a question. I held back my tears as I went through our story, my frustrations, and found out that we CAN have a second opinion, we CAN go to any of the "big" hospitals - Children's, the U, Mayo, all of which I figured but wanted to be sure. I was mostly worried about being disappointed again from gastro and wanting to see someone else, only to find out that we aren't able to. They are going to review our case again and I'll hopefully be getting a phone call letting us know they are going to assign one person to us. My fingers are crossed but my hopes aren't that high.
Next I called Fairview GI, the clinic through the U's Children's hospital. (I think, this is all so confusing which group practices at which hospital!) I was able to get to the GI nurses voicemail and left a message. I asked if our doctor that we are seeing on Friday KNOWS about FPIES, and if there are any other GI's in their group that do know about it or see patients because we've really been struggling and if there's someone specific we can see, I'd rather do it that way instead of screwing around the way we have been. I really hope they call me back tomorrow as well. I got off the phone, again, started crying.
What a day this has been. I don't feel good, I'm stressed out, overtired yet can't sleep. Friday's appointment can't come soon enough. I just hope we can start to get somewhere because I'm not sure I can handle too many more obstacles without something positive coming up, first! I'm not quite sure how I'm going to tackle tomorrow either, other than jump right in and hope for the best! Maybe Kara will have whatever "it" was again, out of her system and we'll slide nice and easy through the rest of our week. That would sure be nice.
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