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!







Dentist

At Kara's two year checkup her doctor suggested we get her in to see a pediatric dentist. With all the vomiting and reflux, plus still having bottles of Neocate every day, she was worried that her teeth were starting to look a little opaque, like maybe the enamel was beginning to wear off. The last thing Kara needs is tooth problems on top of everything else that she's gone through. I made her an appointment with a pediatric group that comes to the area once a week - we were fortunate to get her in, in just a matter of days. In fact, they were able to take both girls so Brenna had her first dentist appointment at the same time! (How did she become four already? Where have the last few years gone with her???)

Brian was unable to get work off - with it finally getting nice outside he has been busy. I had my wonderful, helpful cousin come with to help me out, figuring I'd need it. Kara is pretty used to getting checked out and I was most nervous about Brenna. They called Brenna's name and she went back like such a big girl. She got a little weepy, we could hear her a few times while they were trying to coax Kara into letting them check her out! The girls that worked with my girls were amazing. Kara got a fancy pair of sunglasses to put on and they used the brush on her fingernail, counting each one, showed her how they squirt the water - Kara thought this was all pretty cool! Next was getting the chair up high enough and then laying her down. This is when she panicked! We got through it, I held her down, trying to console her and Marie went back and forth between Brenna and Kara. The dentist soon came over and played with her a little bit before we got settled for him to look things over. The good news is her teeth look great! He was very pleased at how well they look for everything she's been through! I explained how we have to hold her down usually to brush her teeth - that morning was especially a battle. You have to have clean teeth before the dentist, right? I held her down while she was screaming on the floor to brush them! Terrible! He said this is typical two year old behavior!

Brenna did ok and then had to have x-rays done. She had a fit. The lady that was doing her x-rays was a little rough with her and I wasn't very happy about that. They are uncomfortable and Brenna was scared to death. I'm SO glad I had Marie there to help me out, but both girls crying for me was pretty tricky! They both got a wonderful review from the dentist, with the exception of the crowding they have in their mouths already. Both Brian and I had major crowding issues and years of orthodontic work so this was no real surprise to me. I guess we better start putting money away for their braces now!

I'm so glad to have that behind us. They both need to go back at six months. Hopefully that one will be a little easier. They explained that each time it gets a little better!

GI Follow Up

Earlier this week was Kara's six week GI follow up. Dr. S. put Kara on Prilosec her last appointment to see if it would help with her urpiness but wanted to see her soon to see how it was going. My report for her was that we basically have gotten nowhere with trials, let alone trialing the Prilosec!

I began this appointment telling her that we had decided to re-trial green beans after a questionable reaction night and it ended on day three with a full blown FPIES vomitting reaction. We are still having problems from that trial - Kara has been waking in the night screaming and it's been hard to get her back to sleep. She's also had lots of icky post-reaction diapers. I then went on to explain how we couldn't get anywhere with the Prilosec. She'd have it for a few days, do much better but then get so constipated, a symptom Kara has NEVER dealt with!

It was decided that we aren't going to be doing any food trials for the next few months. With Kara's chronic ear infections over the last six months and being off and on antibiotics, her gut is out of balance. She thinks that full rest with Kara's safe foods only, along with Kara's surgery should help her out - the surgery will help with the ear infections so with NOT being on antibiotic we can hopefully find her baseline again. We will be following up with her in two months to see if we can begin food trials again. She's also going to be consulting with Kara's Allergist to see if he has any insight on this as well. I'm not sure what our next step will be if this doesn't work - I'm thinking scope again (UGH!) upper GI possibly, no idea. She did give us a prescription for Zantac now - sort of a step down from the Prilosec so we will try that in the next few days.

I was thinking that no new good trials would be ok since we really haven't passed any foods for a few months. We've done trials here and there but never anything long enough to actually pass. I've given her things here and there to just try once in  a while and I almost did this the other day before I remembered that we are on hold from all of this! It's going to be tough, I'm afraid, with summer here. If we'd be out somehwere and there was a new food, once in a while I'd give her something - pineapple for example. Knowing we had nothing else new in her diet, if she had any off symptoms it would be from that. It's going to be a learning experience for us - just like everything else is!

Being at this appointment, I was again, very impressed with Kara's GI doctor. She has come a LONG way with FPIES. Last fall she wouldn't refer to it as FPIES - it was "simply" multiple food allergies, followed by food protein enteropathy. This time she openly called it FPIES and even talked about it a little bit. She said "my other FPIES patients" which caught my attention. I know she sees another little girl who's mom is active in our FPIES boards but she made it sound like there were a few! I asked her "are you seeing a lot more FPIES patients lately?" Her reply "I'm not sure that there are a lot more out there, it's just that we didn't recognize it before." WOW! AWARENESS!!!! This made me so happy to hear that they are finally starting to accept it as an actual diagnosis even though the only way to diagnose it is symtomatically and ruling everything else out!

I've stuck with Dr. S from the U - I've been very pleased with the way that she's cared for Kara. So pleased, in fact, that even though she didn't necessarily believe in FPIES 9 months ago, her treatment wasn't going to make any difference so we've stuck with her. (Remember our first GI Appt? "Your daugher does not have FPIES, FPIES babies are failling to thrive, your child is not failing to thrive." UGH. I still shudder when I think of that AWFUL doctor.) I'm very pleased in how she wants to keep following up with us, not just letting us go at this point. I'm fine with our care plan with her for now and am hoping that in a few short months, we'll be set up to not have a follow up until next years birthday!

Two Year Check Up

Monday Kara had her two year check up. I'm so happy to announce and could shout from the roof tops that WE ARE NO LONGER ON WEIGHT OR HEIGH WATCH! Kara is about 24 1/2 pounds and 33 inches long. She is stable in the low twentys for percentile on both her height and weight. She's looking great! We no longer have to have a monthly weight check (don't let us kid you, we never had a specific appointment for this, as we've been averaging a doctor appointment at least once every other week lately!) but will do a six month follow up instead! This is wonderful news! Kara is still getting at least two six ounce bottles of Neocate a day, some days more and if she's not feeling well it may be four or five bottles. Neocate is still a large part of her diet!

Kara's skin is the same as it's been - with her recent green bean reaction it's in bad shape. This is nothing new and we have quite the cocktail to help get it under control. The doctor also mentioned her cough and that especially with this time of year, we could be nebbing her with the Pulmicort daily to try and help her symptoms and use the Albuterol as needed.

Kara needs to see a dentist now. With all the reflux and vomiting that's gone on, it was decided to get her in sooner than later, before we have bigger problems on our hands. I wasn't surprised by this as Dr. S, our GI doctor brought this to my attention at our last appointment with her. Kara now has an appointment to see a pediatric dentist tomorrow morning. Her teeth are opaque looking so I'm a little nervous about what's going to happen with this. She offered to refer us to Gillette again but I opted for a clinic a little more local. If she has to have any procedures done, we'll have to go to Gillette or the U but we'll take that as it comes.

Other than that, it was a great appointment. Kara talked quite a bit, and acted her normal two year old self. She is finally on track developmentally since she just started talking. I'm already missing those days when she couldn't talk!!! It's almost more difficult having an FPIES child who CAN talk - makes me feel that much more helpless when she's having problems or crying "No doctor!" in the waiting room at her appointments! I briefed her on what's happening in the next few weeks with all of her appointments and we were on our way. It's a very busy week of appointments, prepping us for a very busy next few weeks coming up!

FAIL

A few weeks ago Kara, about 3 hours after dinner, Kara started vomiting. I was very suspicious about the green beans that she ate for dinner that night. She had had green beans in the past but we don't eat them and we hadn't had them in a long time. Because of this, I figured we should re-trial to see if they were a true pass or not. I very well could have prematurely called them a pass.

We've had some strange symptoms. Night waking, one rotten diaper per day, but nothing was really clear. The last three nights she's had beans consecutively. Two nights ago she was awake in the night crying. Since Brenna is a bed-hopper and ends up in our bed each night, Brian got up with Kara and took her to B's bed. Kara cried for quite a while before finally settling in. We got to daycare yesterday morning and I explained the circumstances of the night before. With that, Kara had a nice, big, sour burp. I gave the daycare gal a quick report - she hadn't pooped yet but to please let us know if she has a few dirty diapers and if they continue to be "nasty". I called around 11:30 yesterday and she had only had one and seemed to be doing just fine. Hmm. The question continues. Is it the beans? Is it teething? She's been chewing on her hand, way back in her mouth quite a bit. Her eczema is broken out pretty bad, all over her back and tummy as well as her normal problem areas - creases and tops of her feet. Is this just "normal" toddler teething (molars?) behavior or are we working towards a build reaction? Unfortunately, the only way to find out for sure is to keep going. I felt fairly confident that she'd do fine - we haven't had a true food fail since last July when she got so sick from pears!

Yesterday was Kara's birthday. We had an event at the fire hall to attend and a bbq afterwards. I packed Kara's dinner - a hot dog to put on the grill, green beans, a bowl of fruit and potato chips. Her dinner was almost the same as everyone else, yet perfectly safe for Kara, or so we thought. We got home, put our tired out kiddos to bed and soon followed.

I woke up to Kara crying around 1:00 this morning. She was crying pretty hard, and I couldn't seem to snap out of it. I got Brian to wake up and run up to check on her. He hollered in the monitor for me so I followed, to find Kara's crib covered in vomit. Nasty, sour, green bean FPIES reaction vomit. She was ok, just very upset about throwing up. I was going to clean her up at the sink but it was everywhere so I gave her a bath instead. She seemed ok, let me wash her hair, we finished throwing pukey bedding in the wash, getting Kara in new pj's and snuggling her to make sure she was going to be ok. We went to Brenna's bed again. I asked her if she wanted a bottle. Her Neocate usually settles her down, I think it makes her feel good, often times. I was  cleary NOT thinking, it now being 2:00 a.m.. We snuggled in Brenna's bed and not long after Kara started puking again. I hollered for Brian this time, and we both held her as she emptied her stomach again. Over and over again until there was nothing left to come out. I kept watching her, watching for signs of shock, making sure she was staying "with us". We've been down this road before and it is one of the scariest things we've gone through with her. She seemed to be doing ok, we did all the clean up again and both laid with her. Kara laid awake in bed until about 4:00 this morning. I couldn't sleep either. She'd hold my hand, snuggle, say "Mama" once in a while to make sure I was still there. So sweet.
This morning I am home with her. Her mood is like being on a rollercoaster. Happy, sad, mad, she just simply doesn't feel good as much as she's trying to be ok. Her face is really puffy, her cheeks are bright red. She's eating and drinking decent so I'm just watching for signs of dehydration, trying to make sure we dont' go down that road. In one of her fussy moments this morning I asked her what was "owie" and she pointed to her ear. Do I dare trust a newly-turned-two-year-old? That'd be all we need is another ear infection on top of this green bean fail reaction.
Bring on the weekend. I'm ready for it.

Upcoming Appointments

We have a tough couple of weeks ahead with lots of appointments, most of them being out of town. Part of me would like to fast forward three weeks and just be done with it all. The anticipation of it all makes me crazy - I was reading the packet of information the U of M sent to me about Kara's surgery and my heart started racing, the anxiety was terrible and I had to put it away. I'll review it before her preop, or right before the sleep study. I can't think about that stuff right now.

To help me keep what we have, and when, I'm going to blog about it. Hopefully this will help me get my thoughts down so I don't forget anything!

• Monday, 5/23: Kara's 2 Year Check: The regular Well Child Check. This will be the opportunity to discuss Kara's (lack of) height. I'm not sure if I've said much about it on here or not but in a matter of a few months, Kara managed to drop from the 25th percentile down to about 2%. The GI doctor didn't seem too concerned so that put my mind at ease but it was something her Allergist was pretty concerned about, even mentioning having her see an Endocrinologist after discussing it with her Primary. In my research and mostly from talking with other FPIES Moms who's little ones are right around Kara's age, it seems to be quite the trend. Roughly between 18 and 24 months it's like they just quit growing, or grow very, very slow. A few kiddos have upcoming appointments with Endocrinology so I'm just as anxious to hear what they find out. There are SO MANY strange connections with FPIES and it has my mind constantly rolling. Other than her height I dont' have any other concerns. In the last two weeks Kara started talking and now it's non-stop. She mimics nearly everything we say and has even picked up on "meanie" and "dumb", no thanks to her older sister! (Dumb, and now meanie are and have been on the "naughty words" list, by the way!) I think she's all caught up on milestones, thank goodness!
• Wednesday, 5/25: GI Follow Up. Out of the last six weeks, I dont' think we've been able to give Kara her newly prescribed Prevacid for more than four consecutive days and that was only had 1/2 of the dose. We were definitely seeing an improvement with her constant wet burps, and she hadn't done much of the random vomiting but it was all I could pinpoint to making her so constipated. That is a whole new road that we are NOT used to going down with her! I'd back off, not give it to her for a few days, she'd be much better and then the reflux would come back in full force after a few days of being off of it. It's been an icky cycle. Not sure what is going to come out of this appointment. I am glad that we have it on the books, however, because we are doing a green bean re-trial and it is coming with some very odd results. I plan on blogging about this whole ordeal at some other time, when it's not bedtime and I get some quiet time to concentrate! :)
• Tuesday, 5/31: Sleep Study. I don't even want to go there. I'm hoping all goes well and I'm just going to take it as it comes. Gillette Children's worked Kara into the schedule to get in at an earlier date but with that comes a later check in time. 8:30 PM to be exact. Now, Kara goes to bed by 8:00 nearly every night, and wants her crib for the most part. After reading the book they sent us on it I'm SO nervous of terrifying her for life! The nurse that I spoke with let me know they have different ways of doing it on toddlers and it is possible that we can get her to sleep and hook her all up at that point. It was explained that since we are from out of town they will make sure to accommodate both Brian and I. We will be in a separate room from Kara but close, and they will come get us if we are needed at all. It was explained that they don't want anyone in the room because of possible snoring (A yes for both of us, LOL!) and possibly getting up in the night. They don't want any noise to risk waking her up, especially from REM.
• Monday, 6/6: Pre Op with ENT, U of M: Dr. Rimmel, the Pediatric ENT that will be doing Kara's procedures, wants to meet with us before the surgery. At this point we will decide, based on the sleep study results, if it will be just tubes and adenoids or tonsils as well. We will discuss her surgery plan - giving her steroids before hand to help offset any possible reactions that might happen and keeping her inpatient for a day after because of her anesthesia reaction after her scope. Kara also tends to get dehydrated so easily so that's another thing we really have to watch with a tonsillectomy.
• Tuesday, 6/7: Pre Op with her Primary: The scheduler at the U told me we needed both these appointments, both with Dr. Rimmel and then with our primary but I'm not sure if this is right or not. It seems like they should be able to do it all at at her ENT PreOp appointment but maybe not. Regardless, its' just one more thing on my already too busy schedule! At least we dont' have to travel for this one!
• Monday, 6/13: Surgery Day. Ugh. I'm planning on taking a week off of work. The scariest thing is that we have NO CLUE what will happen. She could do perfectly fine, have no reaction what so ever. The scope deal could have been a totally fluke thing. I'm not good about not having control and this is one situation that is going to make me crazy. I may need drugs myself this day! Seriously. Remember me saying how I nearly had anxiety from simply READING about the procedure?

So, there we go. Looks like this summer is going to start out about as rough as last summer did. We are fighters though and will be ok, just please keep us in your thoughts and prayers.