Kara was diagnosed with food protein induced enterocolitis syndrome (FPIES) in August of 2010. She has had many FPIES reactions and complications that have lead to numerous hospitalizations and specialist appointments. It was a huge sigh of relief to finally have some answers and a diagnosis, however we have to remind ourselves daily that this is a very serious disease and this is only the beginning of the long road we have in front of us.

Wednesday, December 29, 2010

Lip Smackers Update

The big Lip Smacker Saga earlier this week has ended. Kara had absolutely NO side effects from it.
Who-hoo!
It doesn't answer my question so much about the soy so we'll keep plugging along, only giving it to her once in a while and see how things go. On our way back to town from a family Christmas, I was able to stop at Trader Joe's so I got all stocked up on a large variety of "Kara Safe" foods so we'll be ok for a while, again.
Our newest trial? Sunflower Seed Butter. To be continued...

Monday, December 27, 2010

Lip Smackers

We had an accidental ingestion today. We made it through the holidays and celebration after celebration of being around family, friends and lots of food and had no accidents. Today after work I was tired. The girls had been playing so nice with their new toys and Brenna went to the entryway to get one of her new toys out of the diaper bag. That is where she found THIS:













"Mom, I found this! This is from Kara's surgery!" Yep, it is. "Mom, they put this in Kara's mask so she could smell it and wouldn't be scared!" Yep, they did, and she proceeded to put some on. Next thing I know, Kara runs over to me, smelling like banana berry and the inside of it is completely dug out of it and gone. Great. A quick google search tells me that there is no dairy in it, which I figured but the ingredients list looks like this:

Castor oil, Beeswax, Cetyl Acetate, Candelilla Wax, Flavor/Fragrance, Polybutene, Sesame Oil, Ozokerite, Carnauba, Acetylated Lanolin Alcohol, Mineral Oil, and Hydrogenated Soy Glycerides

So, a quick look at the list tells me that between the castor oil and mineral oil, she's going to be pooping. Then I see the SOY word and start to wonder. This should let us know how bad the soy is going to be for her. A little more look into it tells me that hydrogenated soy glycerides is the end process of a reaction using soybean oil. Maybe it won't be so bad after all. I sure hope not. We've been doing so well lately and I was looking forward to starting a sunflower seed butter today as a trial!

Cross your fingers, cross your toes. I'll keep you posted! :)

Saturday, December 25, 2010

Food Trials

I have had total writers block lately - it seems my mind runs wild in the late hours of the night but once I sit down to post what I had been thinking about, nothing seems to come out right.
Kara passed eggs. She loves them. So far she's only had scrambled and can't get enough of them. Her cough still lags, regardless if she's had eggs in a few days or not, so that ruled out any sign of reaction. They are a complete pass!

The soy, oh soy. I'm not quite sure what to say on this one. There is such contradicting information regarding soy and FPIES. She SHOULDN'T react to because the soy oils and lecithin don't contain proteins (feel free to weigh in here, anyone!) but she's not quite at the baseline she'd been at for the last few months. There are plenty of kids who can't have soy at all, but probably just as many that can handle it as an oil. We've had fussiness, eczema outbreaks, barky coughs, icky diapers, but nothing to the extreme to pull it completely. I'm just waiting for a sign - something to definitely tell me either way that this is a pass or a fail. A build reaction, symptoms to go away, something to make me sure that soy is good or bad. Have I ever mentioned that I HATE this game?

Once our lives settle down again, after the holidays, I will start a plan for trials again and get back to spending hours in the grocery store for new options. We've just been way to crazy busy lately!

Wednesday, December 15, 2010

FPIES Update

Our FPIES life has been pretty uneventful lately, which is perfectly fine with me! We have been trialing eggs (in the form of scrambled) here and there and I'm pretty sure they are just fine. One thing that has been going on, however, is that Kara's croupy cough has been back. It's tough to distinguish whether or not this is food-allergy related or if it's just that time of year. Either way, I've contacted her physician to let her know that we are doing daily nebs lately. I hope this isn't an indication of how our winter is going to go with her respiratory system, she hasn't had so much as a simple cold since her bout of RSV last February.

We were given the ok to slowly trial soy in oil and lecithin from Dr. Helm at Kara's last appointment. The last few days I've been giving her a Ritz cracker and she is loving it. No digestive problems from them, yet but we are going to do this SLOW. If this cough doesn't stop, I'll pull both the eggs and the Ritz for a while to see if we see any improvement but I just don't feel like that's what the problem is.

Our FPIES  live has finally starting to get to the point that I don't think about it every day. What a relief. I never thought we'd get to this point and looking back on how our summer went, it's amazing. Kara has gone from being  so far from baseline, dropping on the charts,  fussy baby to a thriving, happy, personable 18 month old. We have a few dinners that we all can eat - a pork roast with potatoes and carrots, spaghetti with hamburger and sauce. Life is again, getting a little easier every day. I can only hope we can continue on this path and not find anymore reaction foods!

Saturday, December 11, 2010

Cardiology Update

We have had a crazy week so I apologize for not updating on Kara's cardiology appointment until today. She has a healthy heart, nothing notable on the ekg or the holter. What we decided is that Kara is VERY sensitive and what happened is that her EGD that she had done in October put some stress on her body and that's the way she reacted to that stress. When she was having her EKG done in the office, she was not pleased. She didn't fight at all, she was just terrified. I'd settle her a little, she'd look down and then cry again. During this process, her pulse was up over the 210 point so the doctor was able to see how fast and how high she gets up there. The fact that it goes right back down again once settled is the main thing, the most convincing that she is perfectly fine. (from a cardiology standpoint.) We were reassured that anytime she'd have any procedures done, if another EGD is needed, for example, we'd be in the right place if anythign were to happen. So, basically this is something she could go through at any time but at least we left there knowing there was no serious heart conditions.

Sunday, December 5, 2010

Cardiology Again

Tomorrow is our big day. Cardiology/Electrophysiology appointment tomorrow at 10:45. I have no idea what's in store. We came down today to have a little fun instead of going there and back all in one day again. We took the girls to the Mall of America today, to Underwater Adventures. They thought it was amazing! We did a few other things while we were there (I got a new phone finally after that dreadful IPhone vs. Bathtub incident!) and then headed over to some family's for the night. The girls had a blast playing with their cousin and are now sound asleep. Today was just what our family needed!

I'm prepared for tomorrow and am expecting that we'll be in and out, actually hoping for a waste of time. I have done NO research on any of this, which is a little out character for me but it's all the more reason why I feel like everything is going to be ok. If not, bring it on - we are fighters and can handle anything at this point!

Tuesday, November 30, 2010

Change In Plans

Today was supposed to be the long-awaited cardiology appointment. Last night we got hit hard with a blizzard and after getting up early, watching weather reports, radar, and different conversations, I was finally convinced that we weren't going to make it. I want piece of mind of this possible heart problem so bad! I've contained my anxiousness by putting it in the back of my mind, taking things one day at a time and today was supposed to be the day that those thoughts were put to rest!

I called The Heart Center on my way to work to cancel and have the gal call me back to reshedule, hopeful that maybe an afternoon appointment would open up and we could make the drive a little later. This appointment took over a month to get! Once I got to work, I spoke with her and our newly scheduled date was January 4th. I couldn't wait that long! I asked her what other clinics she goes to - maybe we could get in there, and she is actually through the U of M so she gave me a few different phone numbers to call. I called the U, they could possibly get us in on Dec. 20th...a little better but I was told she's only at that clinic once a month. UGH! Why does this always have to be so complicated?!

I finally found out her main clinic and called the St. Paul Children's Specialty Center. I explained our situation and since they are part of the U as well, she was able to pull all the records up from our visit. She took started verifying all of our info - basic, then started going in to insurance and I got hopeful! At the end she said "ok, we'll just need the holter report sent to us, we've got everything else. Can you make it on Monday at 10:45?" YES! It was THAT easy? What the heck was I doing waiting on St. Cloud for 6 weeks and thinking about waiting on the U for 3 weeks?

THIS is why I take matters into my own hands on all these appointments. Closer isn't always better. St. Cloud is an easier drive and probably 30 minutes closer, but really, what's 30 minutes when you already have to take a day off work and travel? Not much to me!

I saw a fellow FPIES Mommy's facebook post today - it said INSURANCE AND DOCTORS = FULL TIME JOB. Amen. This is just another example of how complicated this life can be!

Sunday, November 28, 2010

Give Thanks!

This year, I think I was most thankful for the progress that we have made with Kara's diet and her health in the past few months. She had a plate full of food - beans, ham, whole wheat pasta, potatoes and a piece of bread. It was nice to have her sit with the entire family, with a plate full of food like the rest of us had. She was so excited about her dinner that she didn't care about what the rest of us had on our plates!

Wednesday, November 24, 2010

Allergist Update

Kara saw Dr. Helm, our allergist today. I am so pleased with him. Although there aren't many answers to FPIES (Or any, really!) he has had ideas for us and has given us somewhat of a plan as far as what to trial next and what our plan will be down the road, as Kara gets a little older and hopefully begins to grow out of some of these FPIES triggers.

Dr. Helm walked in the room and immediately complemented us on the TWO POUND WEIGHT GAIN since the last time he saw her, six months ago. He was very pleased! I laughed and told him it's all that Neocate she drinks! He asked me about her diet now because it has to be from more than just the Neocate. I started listing her foods and he was shocked that we've had so much progress. We've got a great little menu going, I was told! 

I had three things on my list to discuss today.
  • Soy: I've been really irritated and confused with Kara's soy intolerance lately and the more I learn, the more confused I get. I asked him about it and his thoughts on what we can do since she never had a "classic" fpies reaction. He explained it like this: soy oils and soy lecithin are made from the fats from soybeans. They don't contain proteins so she should be able to handle this so we can start trying it in small amounts. We have to stay away from anything with soy in it that doesn't say oil or lecithin, as she could have a reaction from the soy protein. I'm not sure how Kara is going to do on this, but I'm willing to try as it would open up a whole new window of possibilities. A few months ago when she was eating her barley cereal three times a day she was really having a hard time. One of the things we were convinced was causing the problem was the soy in it so we stopped, and stopped ALL soy since that day. Looking at the barley box, it contains soy lecithin so if we find that she can handle lecithin foods, it's a whole new puzzle that I don't think we are going to touch regarding the barley episodes months ago. Some FPIES kiddos have problems with both - the soy oils and the proteins. Kara could be one of these but it's a risk that we feel is going to be safe enough to try. She was IgE negative to soy, meaning that it isn't a "true" allergy like a peanut allergy is, but she never had the classic vomiting til shock, FPIES reaction that she had to the rice and oat. I'll trial it slowly and safely and I'm already nervous, reading labels on foods that she could have potentially had tonight, had I wanted to start the soy trial yet. Wow. I think I could have written an an entire post on soy alone! 
  • Dairy. Our other forbidden. Kara has never actually had dairy other than an Enfamil formula for about a week at a year old. We don't know if she has FPIES to dairy or not, we just know that her IgE levels went up from six months to one year giving us enough information to stay away from it. I asked Dr. Helm today if it's a lab we could run again, just to know if it rose again. He said we could but it would be better to wait for a year from the last one. I explained why I was curious about these levels - dairy is in a lot of cooked foods - most breads, for example. He gave me the go ahead to very slowly and cautiously let her try it and see where she's at - only foods that are cooked and have dairy listed towards the very bottom of the ingredient lists. 
  •  Neocate. Due to Kara thriving, and her love of her bottle, I asked him how much Neocate she should be getting in a day. He wants her on around 18-24 ounces a day still. She's on anywhere from 24-30 ounces currently so we aren't too far off. My goal I think will be to get 6 ounces in her for breakfast, lunch and dinner, like you would a glass of milk, and then fill in with water and juice in between, just like you would for any child. 
 All in all we had a wonderful appointment. He was so pleased with our progress and wants to see us again in 6 months. He'll send an order for her to have the dairy RAST test done so we have those results at that appointment to see where to go next. Until then we have every two month weight checks (actual appointments so our family doctor can see Kara to keep updated) and of course, to keep him informed of any reactions she has in the meantime. We're hoping to not have to talk to him for six months, for Kara's sake. At that point, she'll be two and we'll hopefully be halfway through this challenging life of FPIES!

You Turkey!

We haven't done a food trial for a few days, well, over a week because of other events that have happened at our house. Only one person is allowed to have problems at a time and I wasn't going to risk it any more than that by trialing a new food with Kara!

Since meats have been going well, I thought with Thanksgiving coming that we'd trial turkey tomorrow. I was a little nervous, being Thanksgiving and having a reaction over a holiday but since she hasn't had a reaction in so long, I guess I was getting a little too confident and not thinking to clearly.

At Kara's allergist appointment today, we went over her food list and he mentioned foods to stay away from again. In this conversation, he told me no turkey for Thanksgiving since she possibly has FPIES to chicken. I laughed at my stupidity for not realizing that turkey was poultry and if she can't tolerate chicken she won't be able to tolerate turkey.

No turkey for Kara. Time for Plan B!

Food List: Our Menu

I keep talking about our menu and how we have it pretty well balanced out. Here is our most recent food list. This works great for the basics but dealing with this no dairy/no soy issue makes me crazy. I hope to post about our allergist visit yet tonight and explain a little more about the soy. I'm hopeful with this!

Basically, the list on the YES column is the ONLY foods Kara can have and if any of those foods have NO's in them, we have to stay far, far away. We  have a list of future trials and foods to stay away from, to trial at the very, very end, as our yes list grows. There is a list of common FPIES trigger foods that our allergist has requested we follow as some what of a guide. Kara follows that list with her classic rice/oat/dairy/soy FPIES but since she has possibly FPIES to pears as well, that really threw us for a loop as pears are usually on the "typically safe" list.

Yes                                              No                             

Corn                                             Rice                           
Banana                                         Oat
Green Beans                                 Dairy
Nectarine                                      Soy
Mango                                          Pears
Carrot
Tomato
Beef
Wheat
Grapes
Peaches
Pork

The Bottle

Because we are extremely comfortable with where Kara is sitting at on the charts, the doctor brought up that dreaded bottle conversation again.

Brenna was done with the bottle at one year old with the exception of morning and night. We phased out the nighttime one soon after and did away with the morning one well before 18 months. 

Kara, on the other hand, is still on a bottle. Many bottles. We were told not to touch the bottle since it was her only nutrition for so long and she wouldn't take a sippy cup. Now we have a decent list of foods for her and she drinks water and diluted apple juice from a sippy. However, she will not drink her Neocate from a sippy. 

The bottle is as important to Kara as her blankie. It's her comfort. If she doesn't feel good, she wants a bottle. If she's hurt, she wants a bottle. If she's tired, she wants a bottle. We let it get to this point and now it's all become a behavior. It's going to be tough.

Kara gets up every morning between 4 and 5. We eat an early supper and most nights, she's asking for her ba-ba by 6:45 and in bed by 7. When I hear those cries at 5 a.m. I've come to realize that she's starved. We bring a bottle up to her and she goes back to sleep until I wake her up to get ready for daycare or until she wakes us up telling us we've slept in long enough!

We do a lot of travelling now for various doctor appointments for Kara and it's my fall-back when she's fussy in the car. Hand her a bottle, and she'll usually fall right to sleep. Why would anyone want to change that?!

If she has a reaction (which we pray she doesn't!), we all know how hard it is to get her to drink. If we still have that bottle on board, it will be that much easier than fighting her with a sippy cup! 

There are so many reasons for not being ready to eliminate this most prized possession in our house. I think I'll try and make it our New Year's Resolution - to wean Kara from the bottle. What's another 6 weeks, right? The holidays will be done, her specialist appointments will be done for a few months and life should hopefully be more normal than we've known in a while.

18 Months!

Baby Girl turned 18 months a few days ago. I suppose that doesn't make her much of a baby anymore!

Kara had her well child check up on Monday and she is doing AWESOME! I was so happy coming out of that appointment that even the four shots she had to get couldn't bring me down! We started with her weight. Holy cow, did that scale really say 22 #, 15 oz? That's significant weight gain since the last time she was in. The doctor came in after the nurse was finished with her and immediately pulled up Kara's growth chart. Last February she was at her lowest, a large dip on the chart, down to 17%. She's since been lingering around the 22nd percentile. In the last 3 months we've gotten such a good menu going for her and as I've previously mentioned, she loves her ba-ba. This has resulted in a gain on the charts to THIRTY ONE PERCENT for weight! She's 25th for height which means that her weight gain is NO problem anymore.


All in all, she's doing great which is really nice to hear since we've been through quite a bit, all around lately. It was time for some good news for once!

Saturday, November 20, 2010

One Year

Today is the one year mark since FPIES entered our lives. I remember every single detail of the evening like it was yesterday. It's a horrible nightmare that replays in my head each time I think of trying a new food.

We were getting ready to go up to the Fire Hall to work Turkey Bingo that night, after just getting home from a few day convention. Because of an eczema outbreak the first time we tried rice cereal, we decided to give it a rest while we were gone. We sat down to feed Kara her rice cereal dinner and were on our way.

Things were going well, I was visiting with people I hadn't seen in a while, Brenna was helping Daddy with Bingo and I was holding Kara. I ran into a friend who hadn't seen Kara in a while. We were talking and I mentioned that she suddenly didn't look too good. That' when the vomiting started - at first it was like she spit up but it just kept coming out, like there was no end to it. I brought her to the office where we changed her clothes and I took my sweatshirt off. She wasn't quite with it. We no sooner got her cleaned up and the vomiting started again. I remember mentioning how she'd been fine, up until a few minutes before that first vomiting reaction started. I asked one of the wives what she thought, because I knew something was wrong! I remember her saying "Go with your gut, Kendall. She doesn't look good and if you don't think she's ok, bring her to the hospital." Thanks, Kim, I will forever remember your support on that horrible evening. I'm sure we'll be talking about it tonight, as we are up at Bingo, remembering last year's events.

The vomiting started one more time, as someone ran to get Brian from the Bingo floor. I was terrified to put Kara in the car seat, but somehow we did, and headed up to the ER which was only a few blocks away. While we were being triaged and before the doctor got in there, these episodes happened a few more times, finally getting to the point of her having nothing left in her stomach to throw up. I remember the doctor checking her out and her finally looking up at us, smiling. He discharged us saying she must just have some sort of a bug, keep a close eye on her and don't give her the cereal for two weeks or so.

A year later we have come so far in finding a diagnosis for you, Kara Lynne, yet some days I feel we have so far to go yet. You've got a pretty good menu going, along with chubby cheeks, a buddah belly and a good set of thighs, but that's because you LOVE your ba-ba. The more of a menu we seem to get for you, the more difficult things tend to get. Your doctor told me that you are thriving because of my strict adherence to you diet and that's something that I need to remind myself of every day. It's so hard for me to say no to you as your sister is eating a tootsie roll from the bank, to be in the park seeing another baby getting a bite of their Mommy's ice cream cone, or to be out for dinner watching a baby nibble on a french fry. It often brings tears to my eyes because to eat, something that should be so simple, is so difficult for you.

We're taking baby steps and making progress, although slow. This weeks starts a series of appointments. I'm so sorry we have to go through all of this but I'm going to try my best to be able to open these windows a little bit wider for you.

I love you, Baby Girl!

Tuesday, November 16, 2010

Re: Appointments

Re: Allergy Follow-Up
Why does it take over a month to get an appointment with one specialist and when you call for the follow-up, hoping to get in before the end of the year, they tell you that they have not one, but three openings two days away? Don't get me wrong, that's great but I was really shocked - oh, Wednesday? Ok, yeah, that will work...

Re: GI Follow-Up
GI Follow-Up was to be made one month after the procedure. First available at our appointment site? January 6th, almost three months later. First available at main appointment site? January 5th. I think we have the wrong doctor if it's going to take that long to get in to see her, for an appointment she requested. Leaving a third message with the nurse to fit us in resulted in an appointment on December 15th. I think this is our last chance with her, if we need additional GI after this, we'll switch to Children's, where her other care is.

Re: All appointments
I think I've got all of Kara's appointments set up now before the end of the year. We'll be travelling quite a bit so hopefully the weather will cooperate. GI, Allergy, Cardiology and an 18 month "well" child exam (ha!) all in the next two months.
Oh, and we've got November's order of formula on the way so I just have to remember to order Decembers before it's too late. We've got quite the stock pile but since we've met our out of pocket, a stock is just fine with me! :)

Saturday, November 13, 2010

Samples!

Our allergist gave us a prescription for some new, flavored Neocate drinks back in September when we were there. I had been reluctant to fill it because it's expensive and we already have 3 unopened cans of the chocolate flavored Neocate that I paid $150.00 for and she won't touch it! Even though the insurance pays for some of it now, we still have to pay out of pocket quite a bit so I've kept the prescription at home, waiting for a desperate time to get it filled.

In the meantime, I was exploring the Neocate website one day and decided to email the company to ask about the other Neocate products. I explained Kara's FPIES and how she is thriving on Neocate but there are days where she is bored with the flavor and we don't have a backup plan if that were to become the norm.

I promptly got a reply back from a rep explaining the different products and letting me know that he needed my address, phone number and Dr.'s name to send a box of samples to us. How awesome is that?! I had asked Dr. Helm when we were at his office if he had samples and he said he rarely gets them so he had nothing. The Neocate Rep let me know that they'd be sending sufficient amounts of samples to his office as well.

On Tuesday, the UPS truck pulled in the driveway and delivered a box. In this box was a whole can of Neocate Tropical, a few packages of flavor straws to put in her Neocate, two boxes of the E28 Splash Juice Boxes, a bag of probably 20 flavor packs and 3 packs of Nutra. I'm not sure that we need Nutra or what to even do with it, but we got it!

That night for dinner, I mixed up some Neocate Tropical and put it in a sippy. Kara took a drink and actually liked it. Prior to this, the only way she'd drink her Neocate is out of a bottle, making me think that she's goign to be on the bottle until she's 5! She'll drink water out of a sippy just fine but won't touch her formula in it. This gives me hope, so the rest of the week we gave her a sippy of Tropical for supper.

This morning Brian is out hunting and I'm dealing with a fussy, out of sorts baby again. I remembered that I wanted to blog about our box of goodies and that made me wonder if a special juice box that's just for her would redirect her enough to be somewhat happy. She was so excited to have one of her own! Brenna gets juice boxes at Grandma's once in a while but Kara hasn't been able to have one. This is finally making her happy. She comes to take a sip, goes to play, comes to take a sip. Sometimes a little re-direction is all a person needs!

Wednesday, November 10, 2010

Good Week

Our apple week went well. Thursday night I had plans to start a new food Friday morning, beginning to get braver, giving her something she's never had before. All of our food trials so far have been foods that she'd had as a baby but this was when we had no baseline. I've felt fairly comfortable with our trials to this point but now things are going to start getting interesting. Lots more research on foods, lots more anxiety, lots more sleepless nights, I'm sure.

Thursday night I was talking to Brian who was going deer hunting all weekend. Friday morning I made the decision that the girls and I were going to go out of town to have a little fun on our own, putting all food trials aside since she has been doing so well. I'd been wanting to do this for months now but things never quite worked out with our schedules and Kara feeling well enough for me to be comfortable traveling very far from home.

We traveled about three hours south to visit my aunt and her family. Her girls LOVE my babies so what could be better? Time away from home visiting family, good entertainment for the girls (who knew grocery shopping could be so exciting!) and lots of R & R for the Mamma. Travel is a bit difficult - I had to pack her food for the next couple of days and we were going to be in the car during lunch time so I packed an extra bottle, a banana (which was MESSY!) and her "snacky" foods. I couldn't just get her a lunchable like I did for Brenna, or stop at the drive thru - there are NO foods on those menus that she can tolerate!

We had a wonderful time and now I'm procrastinating starting anything else. It's been a crazy week and we've all been tired, plus we have a decent menu right now that she's not tired of yet. Maybe tomorrow...

For now, here is a pic of our grocery shopping maniac. The fuzzy quality is because she was running. Thankfully, we don't have these carts here at home!

Wednesday, November 3, 2010

Apple Update

Apples are going well. Kara's loving having that splash of juice in her water, little apple pieces and applesauce. A few months ago, when we previosly trialed them, I wasn't sure if they were going to be a pass or not because we had soy in a food she was getting every day in a hidden source. When she failed pears, I figured apples would also be a fail because of the high sugar content. Since her scope came back negative, I decided to jump in and trial the apples. It's going so well, in fact, that I wanted to start something new tonight but looked at our board and it reminded me I just started apples Monday night. We need to give this a little more time. Maybe tomorrow!

On that note, because of the frequent night waking and tummy aches prior to the apples, I think we need to re-trial carrots or just call them a fail. It's been a few days since she's had them and we've had two nights of good sleep and no tummy aches.

We're making some progress and getting more of a menu every week!

Candy!

Certain members of our family (ah-hem, MOM!) thought it was only appropriate that Kara get some Kara-safe candy in her Halloween pumpkin. She went to great lengths reading labels trying to find dairy and soy free candy and came up with a ideas, twizzlers being one of them. She also got some smarties. Tonight while I was making supper, Brenna was driving me crazy with wanting some candy so I finally gave in and gave her a twizzler. Nothing gets past Kara anymore so I gave her one as well. She chowed it, or so we thought. Minutes later, while setting the table, I looked over to the corner and there, on the floor, where about 20 little bites of red licorice. It's like she sucked the flavor right out of it, gave up on chewing, and spit it right out. Perfect, works for me, except for the mess that she made!

Fast forward to after supper. Brenna had been begging me about a little bag of skittles so we told her if she was a member of the clean plate club, she could have them. She doesn't let us forget anything and ate it all up. Kara saw that she had her little bowl of something good and made it clear to us in her own little language that she needed something too. What the heck, bring out the smarties! I put half the pack in front of her and she quickly ate them up so I gave her the rest. (She's going to be on a major sugar high tonight, it's more sugar than she's EVER had!) I put the rest of them in front of her and then they were gone. She literally shoved every one of them in her mouth, like if she didn't quickly eat them, we'd take them away! I kept putting my hand under her mouth trying to get her to spit them out but she wasn't going to give them up!

Tuesday, November 2, 2010

A Scare

We had a scare last night, horrible flash backs of Kara's vomitting til shock reactions. We decided to trial apple in the form of a splash of apple juice in her sippy full of water. Kara was in heaven! Something besides plain, old, boring water! She sucked it down, ate a wonderful supper and was happy!

A short time after supper, Brian was working at the table and Kara needed to be up to see what he was doing. We put her in the high chair and gave her some bran flakes, hoping to get a little more food in her before going to bed. Suddenly she started coughing and gagging. We quick pulled her out of the high chair, the tray and the bran flakes falling to the floor. I held her over my arm, on her tummy as she gagged and gagged. She ended up throwing up a small amount. It was deja vu, Brenna stood there in horror watching until Brian asked her (our BEST helper!) if she would get the broom and clean up the mess. She cleaned it all up while we kept working on figuring out if Kara was ok or not. I was terrrified, Kara was crying in between gagging and Brian and I stared at each other wondering what the heck was happening, praying it wasn't a reaction.

A short time later, she was over it and running around, playing. We are sure now that she just simply choked on one of the flakes. (Simply choked. No big deal, only in the FPIES world where you'd rather have them be choking versus having a reaction to something...there's something wrong with this!) She was happy the rest of the evening, and slept all night. I'm going to proceed with the apples, slowly and cautiously. After that scare, I'm not wanting to experience another reaction or near-reaction anytime soon, or ever again for that matter!

Monday, November 1, 2010

More Tests...

I got the phone call from St. Cloud Hospital Cardiology on Friday afternoon that the Peds Cardiologist wanted Kara to have wear a 24 hour holter monitor before her appointment. We also set the appointment up - it's not til the end of November though!

I thought I was Super Mom and headed up to the hospital to get this done. Kara on my hip, Brenna trailing behind. I gave Brenna the pep-talk - Kara has to have a test done, they are going to put stickers all over her chest and hook up a box to it. She's probably going to cry because she's going to be mad but they will not be hurting her. I need you to be a really big girl and my big helper. She was game. She loves being my helper. Note to self, even Super Mom can't handle situations like this, trucking through the hospital with a 20 pounder on your hip, a diaper bag, 3 jackets and a pokey 3 year old in boots.

Kara screamed and fought while the two medics hooked her all up. Brenna stayed busy playing her games on my phone for a little while but the more worked up Kara got, the more upset Brenna got. It finally ended in Brenna standing next to the bed crying as well, so I ended up holding Brenna so she could see, while the two paramedics worked on hooking Kara up, taping her up, and getting it all straightened out. Kara was terrified. When we sat her up and she looked down, the waterworks really started! Poor baby!

One of the girls asked me if I'd noticed any tachycardia and I told her there were a few times that her chest was pounding but it was so fast there was no way I could take her pulse. She said she was trucking along pretty good once they got everything hooked up. I really hope this comes up with nothing!

The name of the game for the next 24 hours was Operation: Distraction. We did anything and everything we could to keep her mind off the fact that she had all those leads taped to her chest (tape from neck to mid belly, and from side to side!) and then a box hanging from it. Remember, Kara has extremely sensitive skin, so she was NOT pleased about all of this.

24 hours and five minutes later, we were back at the hospital to get that thing off! Once again, the sight of it made her cry but when she was done, she hopped down, and said "all done!" and headed for the door. She couldn't be happier! The paramedic said they'd download it and if there was anything critical they'd call us back up there immediately. We've heard nothing and no news is good news!

Happy Halloween!

It's been a busy last few days, FPIES and non-FPIES related.

We did the usual tradition of carving pumpkins which I was a little nervous about but let Kara do her thing. She as terrified to actually touch them but wanted to badly to put her little scoop in there! We didn't have to worry about her putting any of it in her mouth, she wouldn't let any of it even touch her hands! No complaints there!




On Saturday we attended a kids Halloween party. We fed Kara before we went and got there right as all the kids were eating. Brian stayed outside with the guys and we kept Kara out there with him to run around. She had no idea she was missing out on anything and we were a lot more relaxed about her being around all those kids and all that FOOD! It was a beautiful day so we spent the afternoon playing games with all the kids outside. At one point, the kids were all coloring pictures and there was a large bowl of snack mix out on the ground. I looked over just as Kara got some of it - one of the girls had given her a few marshmallows thinking she could handle those, wouldn't choke on them but didn't know about her food allergies. Thank God we caught it. She probably would have been OK with the marshmallows, she's had them before, but it's the cross contamination of the nuts, the chocolate, the soy, and whatever else may have been in it that would have had me panicked! The goodies the kids got from this party were great - Halloween cups filled with silly bandz, a pencil, eraser, it was food free so Kara didn't have to miss out on anything there! Here is a pic of the girls before the party:



We had a ladybug and a busy little bee on our hands for Halloween. I planned ahead and bought a bunch of little toy animals and things to put in Kara's pumpkin so she wouldn't even notice the candy. That was the way to go! She was so thrilled with all her new toys, nothing else mattered. Our families bought special things for Kara to have, such as smarties and things like that but we successfully got away with her having NOTHING. I think Brenna had 3 or 4 pieces, so we did great on the candy front! There were plenty of other distractions this year - we spent a good part of the evening at the fire hall helping out with the haunted house (chasing the girls is more like it, but I'd like to think we helped a little bit!) so we really didn't have to deal with too much candy. It can stay this way in the years to come. Both Brian and I are not big fans of Halloween now. With the big food holidays coming up, I'm sure this will become the norm. It's not only difficult to find foods for her and to make sure she doesn't notice that she is left out, but it's also incredibly heartbreaking now that she KNOWS she's missing out on things!

Here's some pics of our little lady bug and busy little bee - sorry, this is the best we could do! :)



Tuesday, October 26, 2010

Food Trials

This was my post last night - I guess I forgot to post it!

I've got the urge to push it. My future food trial list grows by the day. We haven't had a fail since the end of June, however we've had lots of ups and downs since then. With my list growing with pork, peaches, carrots, you name it, I was ready to get the show on the road, starting with carrots. We started them, hmmm, Sunday, maybe? Carrots are another food I figured would be safe, she'd had them since she was a baby, only taking a break when we went on the complete elimination diet. Tonight, at supper while getting her carrots, potatoes, and other smorgasbord items ready for her dinner I decided to go for peaches. Kara gobbled them up, couldn't get enough of them!!!

Now she's fussy, laying on the floor. She's catching a cold, cutting molars and tired so hopefully it's "just" that. Yep, JUST that. To anyone else, "just that" would be a big deal. I can handle that. It's the reactions that I can't handle. I'm really hoping she's not going to have a reaction.

Thursday, October 21, 2010

A Bump

At our follow up appointment with Kara's primary last week, we discussed Kara's EKG and tachycardia at length. The doctor was going to talk with the doctor from the U to have them review the EGK again, looking at something called the QT Interval. There is some family history of Long QT Syndrome, so she wanted close attention paid to this to see if it's something Kara could have, which would help explain the tachycardia.

Monday night, while making supper, I got a phone call - it came up as "clinic" which had me puzzled. I couldn't think of why they'd be calling me. It was the nurse. "The doctors discussed Kara's reaction and EKG and determined that the QT interval wasn't clear enough to make a determination either way so they decided they want the EKG done again. BUT, since it has to be read by a pediatric cardiologist anyway, they discussed it further and want her to have a pediatric cardiology consult.

Damn. We are getting hit on all sides here. Now we are waiting for paperwork to be turned in to St. Cloud Cardiology so they can review, send us a holter monitor for her to wear for a few days to get some more results and then get an appointment.

Wednesday, October 20, 2010

Results

We got the results from Kara's scope. Everything was completely normal. No disaccharide deficiency, no celiac, no esosiniphil problems, nothing. This is wonderful news. I was prepared for a disaccharide deficiency, hoped we didn't have to deal with celiac as well, and figured the eosiniphil 'stuff' would be normal (I don't even understand what it is, nor did I do ANY research, that's why I have no clue what to call it besides 'stuff'!)

What I wasn't prepared for is to find out that her scope was normal. That's almost worse, the fact that we have no direction, no real answer to why she failed the pears so miserably, and yet, not in the typical FPIES fashion. I'm not sure where to go next. Dr. S. said we need to proceed to an allergist now. I let her know we had an allergist - Dr. Helm out of Maple Grove, to which she replied, good, he's a wonderful doctor. I said "Dr. Helm is the one who said she has classic FPIES" to which she replied "Than I guess that's what it is!"

Dr. S. has never once called what Kara has 'FPIES'. She has always referred to it as 'multiple food allergies'. This seems to be the norm amongst other FPIES babies and their GI doctors. For some reason, they just cannot accept the diagnosis. For Dr. S. to say that pretty much meant she was giving in - she ruled everything else out that could possibly be wrong which only left FPIES. Huh.

So, we have a call in to Dr. Helm to see what our next step is, knowing that Kara's digestive track is all good. I suspect he'll need to see her again, another consult would be wonderful, as I feel like we need some direction. I've stayed away from anything with too much sugar/fructose in it for the fear of another "pear fail" but I am ready to move on. Kara is ready to move on. She's clearly bored with her foods, even her newer ones and hasn't been eating well at all. She has, however, been asking for her ba-ba when she is hungry. I'd rather be giving her food though. I'm thinking pork, peaches, apples, wheat (which we are currently trialing, if I could get her to eat anything!) carrots, I'm ready to get the show on the road. I just wish she'd want to EAT!

Friday, October 15, 2010

Grocery Shopping

I went grocery shopping for Kara today and came home with a massive headache. Maybe it was from mowing the lawn/leaves and my horrible allergies to both, maybe it was the fact that I was at Walmart at 5:00 PM on a Friday, maybe it was because I had my 3 year old with who thinks she's too big to sit in a cart and that she needs everything she sees, or maybe it was because I'm SICK AND TIRED of having NO options of foods for Kara.

I did my research before I left. We've played around with wheat lately so I had confidence that I could find quite a few more options of things for her. I also searched the store for some fruit options that had low fructose and that I could find in a dried fruit, fresh fruit and juice. There's no such thing. I ended up picking up some dried mango and some fresh mango, having no idea where mango is on the fructose list. I'll have to research that a little more before I actually give it to her but I had high hopes. Towards the end of the store I picked up some pineapple too, after running into that everywhere - juice, dried, canned, fresh. No clue where that is on the "list" but I'll be doing my research anyway.

I wish I had a private grocery shopper, and the trust in that person to know that they know everything that I do about what she can and can't have. Grocery shopping for Kara stresses me out more than I can even explain. Anyone up for shopping for a diet that contains only corn, banana, green beans, beef and wheat but doesn't contain egg, dairy, soy, rice or oat? I challenge you!

Follow Up

We had Kara's follow up appointment with her primary doctor on Thursday morning. We went over, in detail everything that happened to Kara while they were looking for the paper work that the U had faxed in. Dr. M got the paperwork and the diagnosis was "adverse reaction to anesthesia". A lot that tells us... :)

She reviewed the operative report, the drugs given, all the notes from the residents and looked up reactions to each of the medications Kara was given. She was fairly certain that Kara had an allergic reaction to the Fentanyl based on the time line of reactions and her symptoms - tachycardia, edema, flushed skin, and the fact that her EKG was normal (other than the tachycardia) and that her swelling had gotten better. She said we need to stay far, far away from Fentanyl and added it the ever-expanding list of allergies.

She is questioning some sort of congenital heart problem so she's having the U review the EKG again with some additional information and she may possibly have to have another EKG done again. This is nothing to worry about for the time being - nothing too serious.

We were thinking we'd hear on some of the biopsy results today but I never received a phone call. Hopefully Monday we'll get those results back. These are the ones that we are pretty sure are all going to be negative but it will be nice to have so many things ruled out. We have a follow up appointment with Dr. S (GI) in one month, follow up with our primary in one month and I suppose now that she had this allergic reaction, I'll have to update our allergist and see what his thoughts are - if she should be seen for that.

Thursday, October 14, 2010

Time To Go Home!

We had a team of doctors come in throughout the morning and it was determined that Kara could be discharged with a follow up with her primary doctor this week. Our GI's partner was the main one seeing us that day. She had thought Kara was maybe given propofol which contains egg. She said stay far, far away from egg. I went over how her allergies aren't IgE and she'd had RAST testing and prick testing that all turned up negative for egg. She went back to read the operative report to see if her new set of eyes could figure out this strange reaction. She came back stating Kara wasn't even given propofol - all the drugs she had were really only mixed with saline so nothing was adding up.

Even though we got the ok to discharge that morning, it was almost noon before all the paperwork was finally completed so we could get the heck out of there. Kara was completely back to her normal self, and bouncing off the walls. She found it fun to climb up on the long window ledge and then realized it was even more fun to "slide" off it onto the cot below. If we didn't get out of there soon, we'd be there longer for a broken arm, or something worse! Her heart rate slowed as the morning went on and her swelling had gone down enough to get her shoes on. She was back, thank GOD!

As I went through all the discharge paperwork with the nurse, Kara and Brian took off to go to the parking garage to get the car. By the time I met them outside the hospital, Kara was already asleep and she slept until we were less than an hour from home. We couldn't have asked for a better trip than that!

She was SO happy to be home. We were ALL so glad to be home! My Grandparents, who had Brenna through all of this, had taken her to daycare that morning because she wanted to go and because she needed some normalcy in this mess. They were going to pick her up at her normal 3:00 pickup and bring her home for us, and to see Kara. Brenna and Kara's reunion was amazing. I wanted to cry again! They have such a close bond, Brenna is a little Mama and was SO worried about her sister. They hugged, kissed, hugged some more, laughed, and then just played and played. It was reassuring to see Kara so happy after what she'd been through in the last 36 hours!

We had Grandma's come visit last night to give hugs to Kara and to see for themselves that she was doing much better and Kara was so wiped out she was in bed by 7:00! She must have loved being back in her crib too - she slept until 6:30 this morning, not a peep!

Inpatient

We got to our room and spent the next few hours holding Kara, watching the monitors and talking with the various staff that came in. Kara really wasn't settled very well and her heart rate was still way too high. She was really irritable about her feet so the nurse checked her IV out thinking it might be infiltrating so she stopped it while we waited for the resident to come in. At that point we noticed that her right leg was even more swollen than her left (IV) leg. The resident said he didn't want them to pull the IV yet given her dehydration history and the fact that she still wouldn't take a bottle. He got some more information from us and told us he'd talk with the chief and be back in. At this point something dawned on me - she's having heart problems and now swelling in her legs. I panicked so bad, thought the worst. I was sure we were going to find out she has some sort of major heart problem. The resident came back in to talk about this and I was crying. I asked him what he thought - what this meant. He said they weren't sure but it didn't seem like it was anything TOO serious. I asked if they could run an EKG and he agreed that would be a good idea. We had been able to put Kara down for a little snooze in the crib. I had her on her tummy and her pulse was stable but still somewhat high - I think it was in the 160's but definitely an improvement. He wanted to roll her over to get a good listen to her so we carefully rolled her without waking her and in just that little movement she jumped up to 210 again. I was so glad he was in there to see that!

I hadn't talked to many people at this point, mostly for the fear of starting to bawl at trying to talk about it and the constant in and out of nurses, doctors, other staff. We were communicating with most everyone by quick text messages - "she's out of surgery, everything good", "going home soon, doing great", "having heart problems" "being admitted"...

I was assured by some family members in the medical field that we were in a great place, we had a good team working with us and the fact that she wasn't in ICU was a good sign. After these conversations I seemed to settle down. Kara seemed to perk up a little bit as well. In fact, we were finally able to put her down. Child Life had brought in a mobile for the crib and some toys so we set Kara in there and she played nice and content for a while. She was still in so much pain with the swelling in her legs so we sat her in there and didn't move, just played in one spot. Auntie Laura and Lily stopped by for a visit so that was really nice to have some distraction!

She had her EKG done and cried as we held her down to get all hooked up. I knew they were quick, but seriously, she hooked up the last lead and it was over, just like that. We would find results out from that after it was interpreted by the peds cardiologist. The resident came back in shortly after and let me know that the EKG looked normal, other than the tachycardia (fast heart rate) that we already knew she had going on. He said it all looked like it was beating regular, when it should be and from the right places. WHEW. Finally able to relax about that one! The swelling was still a concern. We went over everything again for what seemed like the 100th time that day. We couldn't pinpoint anything specific but at that point they were pretty sure she was having an allergic reaction to one of the drugs she was given in anesthesia which was causing the swelling, the flushing of her skin and the fast heart rate. He decided to give her some Motrin after I assured him she was fine with it, as well as benedryl after we remembered that she HAD had it before and could tolerate it.

We got Kara all tucked in for the night probably around nine or so and at that point, found out we were getting a roommate because they were so full. I really wondered how the heck that was going to work but realized there was nothing we could do about it. I've never felt so powerless in my life! My baby was STUCK in the hospital, not stable enough to even THINK about getting her out of there yet and I worried about how we were going to make it through the night, especially getting a roommate now. Brian and I squeezed in on the twin size cot that fit perfectly between the wall and the crib so at least we wouldn't have to worry about falling off! Kara slept so well. I on the other hand, barely slept. I had this horrible fear that because she was sleeping so well that something was wrong. I couldn't relax even with the monitors on her - what if THEY failed?! Her pulse was so good while she was sleeping through the night. It was in the low 100's, even down to the 90's. She slept through them checking on her and getting vitals every two hours. At four they came in with the scale to get her weight, (WTH!) but she had been stirring for a while. We gave her a bottle but as she drank that, up the pulse went, back up into the 170's. Damn. Maybe we aren't over this yet! Kara finished her bottle and went back to sleep, we all slept until shortly after 7:00!

We took Kara down to the toy room when she woke up so the girl next door and her family could get a little bit of rest. Once we got down there, Kara started walking around! Her feet were still pretty swollen but definitely an improvement! She got down and played for quite a while. She wasn't hooked up to her monitors so I was a little nervous but this was a major improvement from our sick little girl the night before! Things can only be getting better!!!

The Vikings!


When it was time to transport up to the floor, a transport aide came down to get us. I chose to walk, carrying Kara in my arms. The aide pushed the IV pole and Brian followed with the stroller and our belongings. We headed up the elevator to the fifth floor. We got off the elevator and there was some commotion. There was a guy in the hall wearing a Vikings jersey as well as a big light shining on him and a big TV camera. I looked at Brian - is that? really? do you think? who? As we got closer he said "it's Adrian Peterson!" Holy S*&T! REALLY? What the...WOW! We were so star struck!
One of the nurses said they come up once in a while to visit with the peds patients. After he was done with his interview Brian said "Excuse me, Mr. Peterson? Would you take a picture with my baby girl?" "SURE!" he replied! He came up to us, put his arm around us and pictures were taken. HOW COOL. We needed that little break in the day, that's for sure! We headed down our wing and there was another one doing an interview - this time it was Ben Lieber. WOW AGAIN! We headed to our room to get situated but with these football stars there it was pretty chaotic. Brian was in the doorway checking things out and I was stuck! We had the IV pole plugged in and Kara was all hooked up to the heart monitors so we had a leash of about 5 feet! I said "I want to see!" and one of the publicity girls said they'll come in! Three guys came in next - I had no idea who two of them were and one of them is a new guy this year - Greg Camarillo. They visited with us for a little while and Kara LOVED them! She loves men anyway and these guys were HUGE! They talked to her and we got some smiles out of her. When we went to leave I told her to blow them kisses and she did - hamming it right up again! They loved her! We received a license plate thing that they all signed. How neat is that that they come up and visit with the sick kids like that? They were so nice, so sincere!

Phase 2

We were brought to Phase 2 shortly after for the remainder of her recovery. Phase 2 started out as normal as can be for a baby coming out of anesthesia. They had said if she didn't settle by 11:15 we could give her some tylenol because we knew she had a sore throat but other than that she shouldn't have any pain. I put on the call light right at 11:15 to request the tylenol. It was 11:50 when they finally got it to her. I was getting so irritated because I knew they could hear us struggling in the room! She gave her the tylenol finally and said to give her 1/2 an hour for it to kick in. The nurse called anesthesia and they said to give her another dose of fentanyl. We went from thinking we'd be going home within the hour to being there for another hour. Once they get a narcotic they have to stay an hour for monitoring. This is when we really started paying attention to this high heart rate that she had. We had a new nurse at this point - thank goodness - and she was really good about constantly coming in to check on her. She even left our door open so she could make sure she could hear Kara and us in case there were any problems. The poor other patients in phase 2!

I don't remember the time frame of much at this point. The red light was blinking and the alarms were going off pretty constant because of her heart rate though. I remember watching it - it had been in the 170's, and her oxygen level had been 98-99%. Her heartrate started climbing - 180's, 190's 200's and her 02 level started dropping - 95%, 92%, then her pulse hit 214 and 02 hit 85%. I calmly said to Brian "get the nurse. Put on the call light. GET THE NURSE." The nurse heard us and came running in. Kara was SO not with it. They paged anesthesia right away and the three of us tried our hardest to keep her awake - her eyes were rolling back in her head and we just kept her moving - took her blood pressure to keep her awake and to check that out and then the anesthesiologist student came in. We all tried to put the pieces of the puzzle together but had no idea what was happening. Nothing was adding up. I remember a lady coming in and talking to the nurse - after she left I asked her who she was. She was a nurse coordinator/liaison and she told her that we could be admitted if necessary, that would be no problem. The nurse told me we aren't talking about that yet, we're going to give her some time. Throughout the next few hours we had our surgeon come in a few times, the anesthesiologist resident, the anesthesiologist herself, all to keep an extra eye on Kara. The anesthesiologist was so nice. She explained that that's why they warn us so much in preop of the way they come out of the anesthesia and that's why they don't like to give babies hardly any extra drugs. She said because of Kara's allergy history they used as little of everything as possible. Then Dr. S. came in again and explained that because we didn't know what was going on with Kara it was best for her to be admitted for observation of her vitals. She wasn't comfortable sending us home, especially because we live so far away. She left the room, I looked at Brian and started to cry! I had held it together pretty well but to know now how worried they were about her, I really started to panic! Lab came in for a blood draw and x-ray came in to do an abdomen xray to make sure there was no puncture or anything from the surgery that could be causing problems. All this came out just fine.

Even though Kara was extremely fussy, she seemed most irritable at her feet. I kept thinking it was because of the IV (in her foot), the blood pressure cuff (on her other leg) and the O2 sensor that was on the IV foot. She screamed each time they took her pressure which was to be expected but it seemed that anytime a cord pulled even the slightest bit, or her foot got bumped, she'd scream! I kept thinking there was something wrong with her IV and checked out her IV. Her foot looked a little puffy so we had the nurse check it out thinking maybe it was going bad. Her other foot actually was a little puffier than her IV one so we figured she was just fine. She has somewhat chubby feet but I never remembered them being that chubby! We put it off as irritability and were on our way to the floor.

Wednesday, October 13, 2010

The Procedure

Brian and I went to find some breakfast up at the cafeteria. We ordered our food and sat down to eat. I was pretty much at ease but as I watched the clock I got anxious to get back. We had just got checked in in the waiting room and hadn't even sat down yet and Dr. S. was out to talk to us! She told us that the procedure went wonderful. Kara slept until they laid her on the OR table, where her eyes popped open but they had the gas ready so she went right back to sleep, only this time, REALLY slept! They started her IV once she was sleeping so she had no trauma from that. My poor baby has my wonderful veins - 3 pokes for an IV start, and she was already sleeping! Dr. S. said that everything looked really good - no obvious ulcers, polyps, anything out of the ordinary but stressed that that was by the naked eye. They took quite a few biopsies and we won't know anything until those come back. She will be giving me a call on Friday, hopefully to discuss those results. The dissacharride biopsies take a little longer (and that is the most important one at this point!) so hopefully by mid week she'll be calling us about that one. She said they should be out soon - it was going to take longer than normal because of the intubation and as soon as she woke up they would get us right back to be with her.

Brian and I sat down and chatted about the findings and within minutes they called us back. We walked in the door and I could hear my baby crying! I was prepared - both from what the nurses and anesthesiologist had told us and from going through anesthesia with Brenna last year with her tonsils and adenoids. Kara was being held by one of the nurses and spotted me and came right to me. I tried to settle her but she was having nothing of it. He said sometimes they are just extremely agitated. I remember her heart rate being around 200 - he explained that it was because she was so worked up. They brought a rocking chair in and I tried to get her settled. Finally they decided to give her some fentanyl because she just couldn't seem to relax! I remember thinking "good, this will relax her enough to take a little nap and hopefully wake up a little more calm." The fentanyl stopped the constant crying (because of being intubated she was so hoarse, her cry sounded so painful!) but she still didn't seem to be "at ease". We were in phase one of recovery for quite a while trying to get her to settle and watch her blood pressure (it was running pretty high) and her pulse. Nothing seemed to out of the ordinary at this point for a baby coming out of anesthesia - the nurse told me she was on the higher end of the spectrum of babies being agitated though.

Pre-Op

Lots has happened in the last 36 hours or so, so this may take a few posts! The good news is that we are home and Kara is doing well.

Our night went smooth. Kara slept until 2:45 which was perfect since she could have a bottle up until 3:30. She drank a bottle and went right back to sleep. She woke up about 5:45 and was ready for her day! We packed up and made the walk down to the U since it was so beautiful outside!



We got Kara all registered and they took her back to preop. She's such a good little patient! She let them check her all out and was a total ham. We had the whole team come in and introduce themselves to us and did questions and answers back and forth. By whole team, I mean the preop nurses, the anesthesiologist, her student, the nurse anesthetist, her student, and the OR nurses. We were explained numerous times that the drugs they use for infants cause them to come out of the anesthesia very quickly so they have a really hard time with it - they are usually very agitated and can stay like that for a few hours. They didn't want us to be surprised if that was the outcome of Kara. They let us know that because of her allergy history they would be using as little as possible of each drug and made special notes to not let anyone feed her but us so she wouldn't get any juice or something she can't have. They had a big sticker on her chart!
She got to play in the toy room while we went about all of this and had a lot of fun!



Her surgery time was 9:30 and the time from 9:00 until then seemed like an eternity. Kara started getting really tired and actually put her head down on my shoulder to fall asleep! We talked with the OR Nurse and decided to hand her off before walking into the OR so she'd have no idea. This was working out better than we could have planned it! We did the hand off without as much as a stir from Kara and off they went! We knew we had roughly an hour before she'd be back because they had to intubate her because of her age and size and explained that even though the procedure itself would take about 20-30 minutes, everything else takes a lot longer. With that, we watched the nurse walk down the hall and we turned our backs to head the other way to go find some breakfast.

Monday, October 11, 2010

Tomorrow



Tomorrow is our big day. The day I've been waiting for for a long time. We got down here this afternoon and since the weather was so nice we thought we'd go for a walk and do a little exploring. We felt a little out of place on the U Campus on a Monday afternoon pushing a baby in a stroller! :)

We walked a few blocks and I showed Brian the building that Kara's clinic was in and then we walked around the corner to the Children's Hospital and inside just to get a feel for things in things in the morning. I think I'm ready for this but I feel like I can't be prepared enough.

After that we were clueless as to what we were going to do in downtime Minneapolis with the baby and we needed to eat so we went to visit Auntie Laura and Lily for some playtime and supper for Mom and Dad. We chatted on the phone with Brenna a few times - she misses us but she's been busy. She was a little jealous when she found out that Kara got to see Cousin Lily and she didn't but she gets to stay at Nanny and Grandpa's and there's nothing better than that!

We check in at 7:30 tomorrow morning. We've gotten the bath off of our checklist so far and Kara is playing happily right now. We have the prep to do yet...Ugh. Not sure how or when we are going to go about that. I'm putting it off! She can have a bottle up until 3:30 this morning so I'm hoping she'll wake up and drink one so we don't have a mega-meltdown in the morning.

Procedure time is 9:30 and they said to allow one hour, twenty minutes. We won't know much until all the biopsies come back which I'm assuming could be a few weeks but I think we should get a few answers tomorrow - inflammation, how much, things like that...
Til then, I'm going to sit back and try and relax. I have a feeling it's going to be a long night and an even longer day tomorrow.

Tuesday, October 5, 2010

Control

I can't seem to get control over Kara's symptoms lately. I think we may have pushed our last few food trials a little too quick. Kara got home from daycare today and was so out of sorts - we had numerous meltdowns and then in bed at 7:00. She's thrown me for a loop - a nasty diaper one day and the next, just fine with no rhyme or reason to what's going on. I'm thinking I need to cut back a few steps and start over, a little more closely and slowly.
One week from today her scope will be over with. At this point, I'm sure it's going to show inflammation of some sort. She's been a mess! Her skin is usually a telltale sign of some sort of reaction coming up and she has new eczema patches coming up daily that I can't seem to get a handle on. I'd worry a little more but with the scope so close I'm more and more anxious for answers. This sugar intolerance is more of a pain to deal with than the FPIES is because it's just more guessing games and we have enough of those!!

Friday, October 1, 2010

Fall Fun





The leaves changed colors quickly and are falling from the trees even faster. This is my favorite time a year with that, and I can't get enough outdoor pictures.

FPIES United Family Fund

A fund has been put together through Children's Hospital of Philadelphia for FPIES research and education. CHOP is the leading FPIES Hospital in the US at this point. A fellow FPIES family was approached to help and through their connections, the FPIES UNITED FAMILY FUND was started.

This is going to be huge, but a lot of funds need to be raised before this can even begin. Moms all over the country have begun fundraising to get these funds going. There is a really neat, informative brochure in the works to raise awareness and families are bringing this information to their pediatricians, allergists and GI's to gain all the awareness possible so that hopefully, down the road, no family will have to go through what we've had to endure and that the professionals they trust the most with their childs health will be able to help them.

We were asked for our ideas in collaborating the website. We supplied pictures of our babies for the "faces of FPIES" and also were asked to write about what FPIES means to us, to have it displayed on the site. There is also a guestbook which many mom's have listed their personal blogs to help gain a little more awareness of each of our individual stories.

When you have an extra moment, please check out the FPIES United Family Fund website. If you are able, please make a donation to help Kara and all of the other families struggling with FPIES.

For more information on the fund, you can also visit our Facebook Site or just search "fpies united family fund.

When I was asked what FPIES means to me, one word came to mind. I dwell on this one word daily. I will be posting how significant discipline is in our lives in the near futre. I think that one word sums it all up for us. Lately it seems that that's all life is all about.

Thursday, September 30, 2010

Welcome to Holland

This was shared amongst my FPIES Mommy board the other day.

WELCOME TO HOLLAND
by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Cuddle

Thoughts

I belong to a group of really great Moms of babies with FPIES. These women have been my crutch, my healing, my everything in these last few months of Kara's FPIES. They all understand what I, what Kara, what our family, is going through. We ask for and give advice, we vent, we share our progress and our failures. We started as perfect strangers and though most of us have never met, we have formed a tight bond.

I've struggled with blogging lately. I've had numerous posts started but haven't been comfortable enough with them to post. I've been through a lot in the last few weeks and I've been struggling. We don't have it as bad as some do - my baby can eat, although a very limited amount of foods. I've been struggling with her refusal of foods, the constant guessing of whether or not she is beginning to react, the battle of trying to get her to drink her bottles and most importantly the balance of a "normal life" and an "fpies life". I'm trying to get grounded and get things figured out. We had Kara's pre-op today and a visit with her family doctor may have been just what I needed to get back to reality.

We have twelve days until Kara's surgery. Twelve more days and then the days of waiting for biopsy results for some answers and rule outs to what all Kara has going on. I have to make it that long and then hopefully we can get the "show on the road" as far as a plan and how to go about these food trials a little more successfully.

Sunday, September 19, 2010

Good Things Run in Threes

We have now had our third food trial pass in a row! Kara is doing amazing!

We passed potatoes, green beens and beef. We are now doing a small trial of tomato to give that ground beef and corn pasta some flavor. She has her own little hotdish and loves it!

I'm so glad we are getting some more safe foods in Kara's diet. She's really become quite bored with everything. It's a daily struggle to get her to drink her bottle. She's only been drinking about half of what she should be to maintain! I'm worried she's going to start losing weight with how active she's become versus the lack of formula she's drinking. I was blaming it on teeth but now I think she's just sick of it. I've given it to her in every different sippy imaginable when she pushes the bottle away but still, no luck. I'm feeding her every chance I get!

With how well she's been doing lately, it's hard to remember where we were a a month ago with the pear fail. She's come so far. I do anticipate that we will run into more "pear fail situations", it's a given, really, and I will be prepared as always but for now it's sure nice to see who our KARA really is!

Friday, September 17, 2010

Beans, Beans, the Magical...

After our trip to Dr. Helm, the allerigst, on Tuesday I was ready to start a new food. I wasn't really sure what I was going to do but at a stop on the way home I went for it and picked up a bag of fresh green beans. Legumes were previously a no for us from our former allergist but we received a list of common triggers from Dr. Helm and beans weren't on it. Bring it on!
Kara LOVED them! LOVED THEM. She ate and ate and ate. I was getting so nervous and probalby should have given her one, instead of like, twenty (!) but I was so happy that she was eating them! The two hour mark passed, I put her to bed. With each grunt, groan, breath she made and each movement, I was waiting for something horrible to happen. It didn't! She slept ALL night!
The next morning I brought her to daycare with the new green beans. I was explaining that she did really good, BUT, well, keep a close eye on her, I'm really nervous and I don't know why, she'll be fine, call me if you think anything, if she starts vomitting don't call 911, I can be there faster...I was a wreck. She asked me if I'd had coffee this morning. (I'm not a coffee drinker.) I didn't know what my problem was! I got to work and a little while later she called me and let me know she wasn't going to give them to Kara for lunch because of my gut reaction that morning. GOOD. I had total anxiety until that point! It was crazy. Usually my gut instincts with Kara have been right on, this time they were off!
Fast forward to tonight. I called it good. Our quickest food pass yet. Kara has been NORMAL (with the exception of cutting those darn molars!) all week. NORMAL. It feels SOOOO GOOD. So good in fact that tonight I jumped right on it again. She had beef for supper. Stay tuned! :)

Tuesday, September 14, 2010

Dr. Helm

I've spent countless hours on google searches trying to find more information, or a doctor within the state that knows enough about FPIES to help Kara and give us some direction. Our GI doctor is great but doesn't recognize FPIES, and really, we need an allergist on board as well. I liked our other allergist just fine but he didn't seem to know about FPIES other than to give us the diagnosis that we already pretty much figured on our own. I've searched basically every combination of FPIES, rice allergy, MN, allergist, GI and others that I could think of. A few of these searches brought me across the name Dr. Thomas Helm.

Upon researching Dr. Helm I found some fellow FPIES Mommies have seen him and have been pleased. One or two of these Moms babies have outgrown their FPIES for the most part or have a good handle on it. I called Dr. Helm's office in Maple Grove and talked with the triage nurse who told me that he has FPIES patients and definitely recognizes it. We made an appointment about 2 weeks ago.

Today was our big day. We left the house at 6:30 this morning to head down to Maple Grove. I had three pages of questions to hopefully have answered. I was satisfied with our visit.

We started at the beginning with Kara's vomiting and shock reactions. She definitely fits the category of FPIES babies in that sense. He asked if we had emergency treatment with those reactions and I explained to him why we didn't - how we got blown off, saying she had some sort of gastroenteritis. We now have strict orders that if she has any other vomiting episodes that are possibly FPIES related we need to get her to the ER immediately. This was really good to know. He said we can't observe her at home. Their blood pressure can drop to scary levels really quickly, not to mention how fast the dehydration kicks in with these babies. She needs to have an IV started immediately in case things get bad. He will be writing a letter with these instructions and a brief explanation for us to have with us anytime she needs emergency treatment. Hopefully this will eliminate anymore "fpiles" instances. :)

He doesn't believe that the diarrhea episodes that she gets from certain foods are actual FPIES reactions. He thinks of these episodes more as a food protein enteropathy. I'm not sure exactly what this means but I'll be researching this, trust me! :) He's very happy that we've seen a GI already and that we have a scope scheduled. He agrees that there may be some sort of sugars intolerance going on in her body and this will give us the answers and rule other things out. I was hoping he'd be on the same page as far as that goes!

I was sure to let him know that our GI won't call this FPIES, but instead calls it "multiple food allergies". To this he responded "this is why she's a GI and not an allergist". It's crazy, their different ways of thinking!

I asked what our future holds. He said typically about 50% of kids begin to outgrow some of the symptoms by age 3 but he says it's more like the age of 4 that he sees it start. When we get to this point there will be inpatient challenges - one visit for each true FPIES reactor food. We will be at Minneapolis Children's and she will be hooked up to an IV before it starts and she will eat the trigger food. I guess we will sit around and way and pray for no reaction. Since there is no test for this, it's the only way to know if they have outgrown any of it or not.

We need to make a follow up in six months and in the meantime he needs to be contacted with any reactions she has as well as reports of her scope, other GI appointments and needs weight checks every three months to make sure she's maintaining.

I was very pleased with Dr. Helm and think we've found a good doctor for our needs right now. Hopefully after this scope is over we can quit having to travel so much!

Sunday, September 12, 2010

One Step Forward, One Step Back

Yesterday was Day 7 of our potato trial. If everything was still fine this morning I was going to move on ot another food because the potatos seemed to be a go. A third pass food! Yay!

I was away for the day at a big craft fair and Brian spent the day with the girls. I got home and he told me that Kara got a hold of Brenna's sippy again. I've been giving Brenna Kara's pear juice to finish it up. Brenna used to be SO GOOD about keeping her sippy's at the table only. I don't know how this keeps happening and I don't know what to do about it. I feel like we are punishing Brenna enough as it is to not let her have certain things, or snacks when Kara is around but these accidents are happening all too often lately with a curious toddler!

Kara woke up from her nap with a really icky diaper. I was home for a few minutes and had to change another one. Her bottom? Broken out, tomato red, open, bleeding spots. It happened that quick again. Pears are DEFINATELY a fail - at a few sips of half pear juice, half water she reacted like this about 3 hours after digestion. So. Is this an FPIES reaction or the sugar intolerance? I can't wait until her scope on the 12th, still one month away. I'm hoping to get some more answers about all of this.

Now we have to wait to get back to baseline again before we can start another food trial. Hopefully this little bit that she ingested will be out of her system soon - like by tomorrow! After the pear food trial she was sick for over a week before we were back to baseline.

As of this morning I still wasn't sure what I was going to trial next with Kara. I guess this gives me a few more days to decide. We see the new allergist on Tuesday so hopefully he has some insight for us.

Bath Toy

The other night I had the girls in the tub playing and was sitting on the floor playing with my phone. I got Kara out of the tub, in pj's and went to wash Brenna's hair. Kara kept throwing more toys in the tub thinking Brenna needed them. Apparently she thought my phone was a toy.

I was scrubbing her head as I heard a "plop" and looked down to see the purple back of my iphone at the bottom of the tub. The iphone that I just got, that I paid a LOT of money for. I grabbed it out, it couldn't have been in there 5 seconds. I quick pulled the cover off and dried everything off. It all worked. A few minutes later the screen went shaky and then shortly after nothing worked. We tried the rice trick - I put it in a bag of rice for a few days and we finally got it working again today.

I thought I threw all the rice in the house away a while back. We certainly haven't eaten it around here in months for fear of Kara ingesting a single piece of it. It's a forbidden food at our house! Luckily I had a box in the back of the cupboard. I think the fact that the rice is what saved my phone is a little ironic...

Friday, September 10, 2010

Bottle Battle

A thought that runs through my head on a daily basis is "what will happen if Kara stops taking her bottle." I remember Brenna getting to an age, probably around 13 months that she didn't care about her bottles at all anymore so we took them away.

At this point Kara's main, pretty much only, source of nutrition is her Neocate Jr. She will not take this out of a sippy cup and we haven't pushed it because we NEED her to drink enough of it in a day to maintain. So, she gets roughly five 6 oz bottles per day. Lately there has been a morning or two when she's just too busy. She wants to see what big sister is doing or she just woke up for the day and doesn't want to sit in the chair with her ba-ba. The other day she took TWO ounces of it and that was it. She hadn't had a bottle since seven the night before so she should have been starved but absolutely refused her bottle. It's days like this that I start to get really nervous - for the lack of nutrition, for the chance of dehydration, for every problem that these two things can cause. I constantly handing over her sippy cup of water which she'll sip on once in a while, when big sister has a sippy but nothing close to what she should be having. If I replace the water with her Neocate, she throws it, wants nothing to do with it.

With her only having two, hopefully soon to be three, safe foods there's really no room for her to be refusing anything in her diet. Hopefully she will continue to drink her bottles every day and we won't have to even get to that next point.

Thursday, September 9, 2010

Kara's Surgery

Kara will be having surgery on Tuesday, October 12th at the U of M Children's Hospital.

We won't know what time until the week before but if I understand it right, it will be right away in the morning and then will be under observation until late afternoon or so. She will be put under for the procedures to be done. They will be doing an egd and a sigmoidoscopy. They will be doing biopsies and this will hopefully give them a better idea of what we are dealing with.

GI Appt

We went down to the U of M yesterday for Kara's GI follow up appointment. Dr. S. was so good, once again. She came into the room and really seemed to remember us and specifically, Kara. I showed her my spreadsheet that I update as we progress or regress and she seemed impressed. She commented that I seem to have a really good handle on how to do this! (Thanks fellow FPIES Mommies!) After we briefly went through how the last month has been she told us that she wants to scope Kara. I'm so glad she was insistent on doing this because I was going to ask her if she would, anyway. It would be so nice to know what is going on in her insides after all these gastro-disasters lately.

Dr. S. was very interested in hearing about the pear fail and is thinking that Kara probably has some sort of sugar intolerance on top of the multiple food allergies. They will be doing biopsies to see if we can determine what exactly is going on with that as well.

She had to have some lab work done as well as a few other preop things done and she did so well. She is such a good patient when she's getting checked out! The lab draws are obviously horrible but I just remind myself that she's more mad than anything because they numb her arms with emla cream 20 minutes before the blood draw so she really can't feel a hting. I'm getting stronger about holding her down for these - both physically and mentally! It was a long day and we were all tired when we got home but I was satisfied with what we found out.

Monday, September 6, 2010

Potato Trial and GI

Our latest food trial is potato and we just finished day 2. She doesn't care for them too much so it's sort of a struggle to get her to eat them. I fried some up with corn oil tonight so I'm hoping she'll eat them a little better tomorrow.

As always, I'm debating what our next trial will be. I don't know if I'm ready to try a fruit, vegetable, a meat yet, or even wheat. After our pear fail I'm a little leery on another fruit but I would really like something to flavor her water a little bit, especially with our latest (almost) bout of dehydration. We really struggle to get her to drink her Neocate and even then, she'll only take it out of a bottle and sometimes even refuses that.

Tomorrow we go to the U of M for our follow up GI appointment. I'm really anxious for this trip, as usual. In the last month we've had two fails - soy and pear and two passes - banana and corn. At this rate we aren't getting anywhere very fast! We will find out tomorrow if Dr. S will scope Kara. with the recent pear fail and the week + of getting back to baseline, I'm really hoping that she will decide to do this. Poor Kara has reflux going on, not to mention her other icky tummy problems!

I have to pack for tomorrow and figure out some way to pack her food for the day - keeping it cold, warming it up, what to pack her, how to feed her. Going to a restaurant is out of the question, it's just not fair to Kara to eat in front of her like that. We'll probably be relying on Neocate tomorrow with Kix to tie her over and more or less entertain her.

I'll update about the GI as soon as I can. Wish us luck!