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.

Thursday, June 16, 2011


Today is day 6 post tonsillectomy. It's been an awful last 6 days with today finally (maybe?) looking up. A lot has happened and I'm going to try and blog about it in parts, as it is just way too much information to put down all at once, especially since I've barely had any time on the computer in the last week and my mind is not working the greatest due to pure exhaustion.

Today I GOT A SHOWER. Without a screaming Kara outside the curtain! I snuck into the bathroom while she was playing nicely with the dollhouse that I brought out to the living room yesterday in hopes of a distraction from all the pain! This was huge! This week I've been feeling similar to the way I felt when I was home with a newborn baby, only this one is 20+ pounds of baby who screams when she's put down and has been in excruciating pain.

Today I LEFT THE HOUSE! I hadn't been out of the house since Sunday, with the exception of a car ride to the ER yesterday (which I ended up turning around and going home). Kara seemed pretty content today so I was on the phone with my mom and we decided to go for a drive  and go visit her at work. She works at a resort so we got there and went for a walk along the shore, saw the water, boats, kids (BOY! As she says!) and a few chipmunks. We carried her off and on as she gets tired out really fast. We went back up to my mom's office and Kara got a good drink of water and started fading really fast so we left. It was a perfect outing, nice scenery and just long enough.

Today I GOT LUNCH! I don't know what I've been doing for eating lately - I seem to have no appetite which is just fine with me, I certainly have weight to lose, but it seems our days have been spent in the rocking chair, snuggling on the couch, or in my bed trying to keep Kara content, if I'm not coaxing her to please drink something! We got home and she was insistent on noodles so I started boiling some vegetable broth for some difference in flavor. Kara ate a few noodles, played with a few more and threw some on the floor. She also had a few bites of a jar of apple/blueberry baby food. Baby steps here...this allowed me to put a pizza in and actually have some lunch. It doesn't matter that I ate my lunch while blogging this, I should have said "I GOT LUNCH AND GOT TO BLOG!" :)

Today IS MUCH BETTER THAN YESTERDAY, and all the days prior, but I'm reminding myself it's only 2:30 in the afternoon. When I talked to the ENT nurse yesterday I was reminded that days 7-10 are actually the worst, as the scabs on the throat start to heal. I think we just might get a one day break before this healing painful time happens!

There are two things that stick in my head from our hospital stay.
One is the wonderful resident's words as she was discharging us: "Ten days from now you guys are going to be so happy you did this."
The other is the ENT's answer when I asked how her tonsils looked: "They looked like they needed to come out. Most importantly, we had the sleep study done to prove that they needed to come out."
I needed this for my own piece of mind, I explained to him. I felt better knowing that they actually looked bad as well, so that made me feel like we did the right thing putting her through this surgery, as risky as it was for her.

It's going to be rough but will all be worth it. I'm beginning to see the light at the end of this long, dark tunnel.

Wednesday, June 8, 2011

The Week

This week has been trying. I'm not quite sure how else to put it! One minute at a time is about all the faster we can go!

Monday Kara and I hopped in the car for our 2 1/2 hour drive to Minneapolis. We were meeting with her ENT before the surgery to discuss what all was going to be done, what extra precautions were going to be taken, the whole works. It started out with Kara having fluid in both ears - but not infected, yet! We went over her sleep study - definately has obstructive sleep apnea and the tonsils really should come out. We went over the risks and benefits of the procedure and it was decided to have the tonsillectomy done at the same time. After going through information with the doctor, we got other things taken care of with the nursing staff and Child Life. I THINK we are ready. They reminded me to just keep drilling "it" - meaning Kara's previous reaction - into their heads. Every one of them that comes into the room the day of her surgery. It can only help to have everyone that much on board with what can potentially happen.

Tuesday morning I woke up two very tired little girls and drug them out of the house to daycare. It was a terrible, terrible morning. We were all so tired and I was running late so pretty much just dropped them off and left. I was making a mental list in my head of foods for Kara to eat after her procedure throughout the day and decided that I was going to run into town after work to pick some things up, get a book or two to read and maybe something new as a distraction for Kara in the next few days. I had to stop at home quick and my girls were both still so crabby! Brenna was terrible, whining, crying, I left Brian with the girls and was on my way as that was my only night to get things done.

I got home from Walmart and had picked up a pizza on my way home. I got home to find neither of my girls feeling the best. Brenna was laying on the couch, curled up in a ball and they both had temps. Bren didn't touch her pizza, didn't even budge from the couch. Her tummy hurt. The night went on as she whimpered on the couch and her temp continued to rise. She had mid belly pain but no vomitting, diarrhea, constipation, so I really started worrying that it could possibly be her appendix. We got Kara put to bed for hte night and Brenna was sleeping so we just figured we'd keep a close eye on her. At 11:00 she was moaning in pain and her temp climbed to 103 so we brought her to the ER. Three and a half hours later and many, many tests run, we ruled out appendicitis. She has a bad UTI and some other things going on so we took her home on two antibiotics. I found myself snuggling her in the ER wondering if it was going to be possible to get her into surgery, recover and home from the hospital before I had to leave with Kara Thursday evening. Thank GOD it didn't amount to that! We're watching her close but she's much, much better today.

I got up with Kara this morning to get her ready for Brian to bring her to daycare, hoping Brenna and I could get some sleep. I had told Brian she was ready and then stopped to take her temp, thinking she still felt warm. Sure enough, she was over 100 degrees. Great. We have surgery scheduled (and it took a LONG time to schedule!!!) for 48 hours from now. I called the clinic as soon as they opened and got her in right away this morning. She's got a nasty nose, red ears full of fluid and an icky looking throat. She also has some nasty looking blisters on her bottom (have I mentioned how far from baseline she is lately?) and the doctor was pretty concerned at the look of those as well. She is now on amoxicillin again, due to me refusing anything else this close to surgery as well as a prescription antibiotic ointment again. The doctor explained (it wasn't our usual doctor) how she wanted her on a different antibiotic and wanted to give her sulfa. She had a totally valid point and I would have agreed, had we not been two days from surgery. I explained how we have to trial everything, how our GI doctor says no more trials for a few months and to me it wasn't worth the risk. She agreed with me and we started amox again today. I REALLY HOPE AND PRAY THAT IT WORKS and that she is better by Friday morning when we arrive at the U. Do I have to tell them about this recent infection and antibiotics when we get there? We can't put this surgery off any longer! Having the throat and ear problems again is putting my mind at ease a little bit about her having the procedure done.

I'm not sure what's up for going to work tomorrow. I guess it's a really good thing that I got somewhat caught up yesterday. As of now, Kara's temp is still 100. Oh, and she's still awake sitting next to me as I type. With a tummy ache. She's been scratching like crazy and I'm noticing that her eczema is all bright red. I think it's time for some benedryl. Damn it, this better not be a start to an amox reaction now but with our luck this week, it probably is.

Wednesday, June 1, 2011

Sleep Study Part 2

We got Kara in the crib and started moving wires and getting her situated. We thought we had her all set up but she started stirring, saw me and panicked. She stood up, crying and I held her and snuggled her. I finally asked if she would lay back down in the crib and I would pat her butt. She did this, rolled over, snuggled in and we stood over her, rubbing her back, patting her butt, consoling her. We'd stop, thinking she was alseep and she's say "Mama?" The nurse said we needed to do this until she went into slow wave, deep sleep and then we'd try and get out of there. It seemed to take forever, but basically we both were in a pitch black room standing over a crib staying as silent as possible except for the pats on her bottom.

The nurse finally came in and we quietly tried to pack things up. At one point, Brian bumped a toy. "Shhhh!" I said! They assured me that she was in a really deep sleep and with that, she didn't even budge! They showed us our arrangements for the night and made us right at home. They treated us so well! Brian and I had a room in a consult room - it had a small couch in it and a pullout chair, all ready to go for us. The nurse said we could knock on their office door anytime in the night to check on her and assured me they'd come get us if they needed us. Since Kara was the only patient that night they even let us in their office and showed us what was going on. Holy cow, 22 leads gives a LOT of info. They had a camera focused right on Kara as well. Pretty cool! I'm glad we got that opportunity!

Brian and I got settled in and I was exhausted. By this point it was almost ten. I had no clue how our night was going to go so I wanted to get to sleep. It had felt like I had slept the entire night when there was a knock at the door. She nurse said she had just woken up so they were trying to get her back to sleep but she was crying for Mom. They said they got plenty of information so if I wanted to come snuggle her, maybe we could get her back to sleep. It was only 3:45!

I got to the room and she was sitting up as they were working on un-hooking her. She was SOOO happy to see me! They said she did so good. She started stirring a little bit and they could see her eyes open and close. Then she seemed to notice that damn oximeter again and that was enough. She was kicking at it, doing anything she could to try and get it off. Funny how with all the wires on her, that again was the only thing that bothered her! We turned her movie on again and snuggled while they worked with adhesive remover and wet wash clothes trying to get her cleaned up. We got her a bottle and again, she refused it, just wanted to hold it. Funny girl. They let us be and I sat with her trying to get her to go back to sleep but she was wired. She started asking for Daddy so I told her to knock on the door and tell the nurses we were going bye-bye. That bought us some more time before waking Brian up - someone had to get some sleep to drive home! They got such a kick out her her. She gave them all hugs and kisses and certainly didn't hold a grudge from the night before! The nurses couldn't give me much info about the study, just let me know that the doctor would be calling me today with the results.

We went to our room and she was so happy to see Daddy! Brian asked about the time and with that we promptly got up and ready to go to beat the morning traffic. We were on the road by 5:00 and home a little after 7:00! Kara did really well, I'm so proud of her. This is working her up for next weeks surgery, that's for sure!

We bummed around today and I had many attempts to get Kara to go to sleep - I was so tired. Any change in my sleep seems to mess me up for days! The doctor called mid-morning. He said Kara had mild to moderate sleep apnea, occurring about six times an hour. He let me know that he is sending the report to the ENT so we will hopefully find out before the weekend if the plan is to take the tonsils out as well or not. If we dont' find out by Friday, Kara's preop with him is on Monday. Surgery is Friday!

Sleep Study Set-up

Last night was the long-awaited sleep study. On our way down to Gillette Children's Specialty Hospital I received a call that they had a cancellation so we could come earlier than our 8:30 arrival time. We stopped and had a quick drive-thru dinner and luckily I had packed a dinner for Kara. Kara was pretty excited. We told her she's going to the doctor and we played games about how she's going to sleep there in the doctors crib. She thought that was pretty neat and exciting! We got checked in and they took us back right away. We walked into the room and she was so excited to see the crib, she wanted to lay down on it right away. We brought her new lady bug Pillow Pet - her fave, since they wanted us to bring special things from home. She laid down on it and we teased "nigh-night!" to which she promptly got back up!

Kara picked out a Dora movie and with that, sat on my lap. We had three nurses working with us and one of them came back with a big blue fleece tie blanket with Dora on it! She was SO excited to get a new blankie! The volunteers make them for the kids to keep! We visited, and Kara charmed the nurses as they started setting things up. They first measured spots on her head and marked them with a special red pencil. She thought that was pretty silly that they were writing on her - I hope she doesn't think this is ok to do! :) They started hooking her up quickly and she tolerated this for a little while, snacking on her grapes. First they clean the area, then apply some adhesive, then push pretty hard to stick the lead to her head, then cover it with a piece of gauze.

She tolerated the beginning part just fine but she had 22 of them on her head. As they started on the sides and the other nurse started putting them on her legs and chest, she started getting really agitated. It was heartbreaking having her cry so hard. I held her down, Brian held her hand and we tried so hard to console her. I stayed in my Super-Mom Mode, trying to be strong, telling myself that nothing hurts, it's just really scary, but she doesn't understand any of this - she probably wonders often why we do what we do to her!!!

The dreaded pulse oximeter on the toe was the last thing that set her off. She had major problems with this during her scope too - I figured it was because of the painful swelling that she had in her feet. She had a fit and I dont' see how she could remember the scope - she was only 17 months at the time but she sure wasn't happy about it! After that came the most important piece. They wanted to try the piece that goes under her nose. If this sticky white thing with leads on it wasn't going to work they were going to have to put one on that actually goes IN her nose. She had a really hard time with it but by this point, she was hooked up to so many different tubes and wires that there was really no reasoning. We kept trying her bottle hoping that would settle her down and help her fall asleep. She wanted it close but wouldn't touch it!

The final step was to put a wrap over her head to hold all the wires together so she didn't get tangled up in them. It was so sad to see her look like this. I'm having a hard time wondering if we are doing the right thing. Should we just put off the tonsils, what should we do? What is the right thing? It's all out of my control right now and I HATE THAT.

We snuggled into the chair and finished watching Dora. Once Kara was asleep in my arms, we got her up on the crib. Here was hoping for a good night!