Well, I hate gtube feedings. I hate what they do to her. She is not doing as well as she was on jtube feedings and that is evident. WHY... i have no idea, but somehow, just moving food out of her stomach and into her intestines causes her to get very exhausted. She is pale again, has dark circles under her eyes. She is weaker than she was when her jtube was in the proper place. She is sleeping 16 hours a day, requiring 24hr oxygen. Stomach bloating... luckily, we have been able to keep this to a minimum. We got a new formula for her that has a higher calorie, so we are able to decrease her rate to 35ml/hr. Even that causes a bloat, but it's not so bad. Interesting... she is BEGGING for food AGAIN! I don't get it. with her jtube feedings, she rarely begged for food, but now, she is back to thinking that she is starving. We really think that she just doesn't understand the difference between stomach pain and hunger. She's just been extremely irritable again. it's evident, this jtube surgery might be just what she needs. We heard the paperwork went through to surgery, but we haven't gotten a consultation date yet. Hopefully, this won't take too long and hopefully she will do ok until then, but right now, it breaks my heart to see how floppy she is and downright not feeling well.

We got a magazine that came in the mail today. It's a costume magazine for halloween. I asked her to pick out some costumes she would like to be for halloween this year. I fully expected her to pick ballerinas or fairies.

She turns the page and is like... ooo! i wanna be a cowboy! Pointing to the cowboy and NOT the cowgirl.

So, i said ok, keep looking. THEN, she says she wants to be a FIREFIGHTER!

So, i tell her to keep looking and maybe she will find a beautiful princess or a ballerina. She skims over the princesses and ballerinas. Then she turns the page and keeps looking and says, I wanna be SPIDERMAN!

I just laugh and laugh. Since she was very young, Quinn has favored boys toys over girls stuff. She does still enjoy her littlest petshops and barbies and babies, but not nearly as much as trucks, cars and blocks. So she gets along well with her two cousins lol!

Here are a few pictures from our trip to Washington. This is her with her two cousins, Matt Matt and AJ.

The above picture is my brother's motorcycle. Nice bike, eh?

And lastly, we had a playdate the day before yesterday with a fellow Mito Mom and her two children who live in our area! Brayden and Bryna were ssssoooo awesome! They came to Quinn's bday party too when she turned four. Here are some pictures. Brayden was a little shy. I think the heat was making him kinda tired. We played mostly indoors, but i didn't think about taking pictures until after they were all worn out. Silly me!

Bryna takes such good pictures! She's such a happy little girl.

Oh and one more. This is a picture that Quinn drew of her "family" It's me, Joe and her. (She always draws me with super long legs)

Thanks for reading!

Crossing the Crossroad

First off, we are back from my brother's wedding and it was BEAUTIFUL! It was like the movies! I'm so happy for my brother. Quinn did very well there. We had some oxygen days, but she was so happy to see Uncle Dan, Aunt Tonya, cousin matt matt, aunt Brittney and Uncle Kris! It was great being around family, for the most part. So much family in a close environment can be taxing (1 shower to share with like 12 ppl), but it was still a great thing. I miss my little brother. I'll get some pictures up as soon as everyone gets back home and settled.

Unfortunately, we came home and pretty quickly it became evident that Quinn's j-tube was not where it should be. So, we went to the hospital to check on it today and, sure enough, it has migrated AGAIN back into her stomach. So frustrating! After only 2 weeks since the last misplaced tube. So, instead of going the whole GA route and KNOWING it will fall back out again, we decided to revert back to the regular g-tube. Such a sad thing to have to do too because she was sooo spunky when the j tube actually WAS in place. We are having to go back on oxygen 24/7 and back to continuous g-tube feedings. Quinn was given some new prescriptions to help with the consequences of an extremely slow GI system and the GI doc is referring her to surgery consultation for a separate j-tube. We are sincerely hoping that she can handle the g-tube feeds until we find out what is the very best thing to do for her. at this point in time, it's looking like her very best option is surgery. I'm so upset. I feel like these last two months have been nothing but a road of ups and downs. And now it comes down to surgery. If she doesn't tolerate this, Quinn will have to be admitted to the hospital until she gets her surgery done.

Finally, on a good note, Quinn's belly xray looked much better than it has in many, many months!

My Quiet Time

It's my quiet time right now. I've been cleaning the house like crazy preparing for this trip to Washington for my brother's wedding. We will be gone for a week and I want my house to be very clean when i get back so i can just come home and put the stuff I traveled with away and not have to worry about anything extra. So I been scrubbing bathtubs, walls, doors, dusting, mopping. so now, it's rest time right now. Q got tired and decided to take a little nap : ) The puppy and big dog are asleep now too. this is actually relaxing.

One thing that seems to take up most of my consiousness <--- how do you spell that stupid word? .... is This J-tube surgery. I often wonder what would happen if we go back to continuous g-tube feeds. This would likely mean that Q wouldn't be able to eat anything at all by mouth. She would have to go back to oxygen full time again and she would be on the feeding pump 24 hours a day. The stomach would likely be constantly bloated like it was before and etc...  Just like I picked up very quickly when her j-tube was not in its proper place... I knew quickly because her stomach simply did not empty fast at all. Even on 35ml/hr, it was filling up her stomach to AT LEAST 60 ml before it even emptied. Probably more because i didn't even bother hooking her up to two syringes. (this is likely if her stomach motility has not progressed in the past 2 months, if it has, I can expect worse going back to g-tube) Part of me wonders if we can just deal with this for a while instead of insult her gut a little more. Maybe until it becomes a dire emergency for her to absolutely need a j-tube in order to survive. While i think about the possibility of doing this, I also think about the great improvement we have seen when her j-tube is actually in the right place. Quinn seems more alive, her color is wonderful. her stomach, normal in size. She has no tubes on her face. She concentrates more on schoolwork. She sings and laughs and is just so happy! So what this boils down to is that this j-tube is likely improving her quality of life. I'm afraid to ruin that in any way. either from having surgery or not and going back to g-tube feedings.

another thing that I think about a lot is school. School is coming quickly and I'd like for Quinn to be able to go in for at least 3 hours out of the day. School took a lot out of her last year. We had a year of perfection it seemed! A year with no hospitalizations... 2009 was a very good year! She started school full time at the end of 2009, off oxygen and feeding tube, and we were very happy with her progress, but by May 2010, Quinn had dropped down from 4 hours a day 5 days a week, to 1-2 days a week for 3 hours. She was placed on the feeding pump 24/7 and placed on oxygen 24/7. Her minor seizures that were well controlled, progressed to full blown grand mals (had one in school even) and she was hospitalized for pneumonia. This created a nice little downward spiral into the hole we are in right now. Would this have happened had she not been in school? Maybe... but there is really no way to know for sure, but I would like to keep her very active and healthy when she enters school this year. I'd like for her to stay out of the hospital and keep her butt in school so she can have fun, and learn with all the children. Keeping her tube as a g/j, will not accomplish this goal. Having surgery to put in a j-tube might, but at the same time, it might cause even more problems... and keeping her on the tube with just the g-tube, well, let's just say that even with all her supplements, this wouldn't sustain enough nutrition to keep ti going for long.

It is likely that our best option is to have this j-tube surgery. But, it scares me too. Which is why I cannot stop thinking about the pros and cons. I find enough pros to lean towards this option, but enough cons to stay away from it. The hardest thing is not knowing how her GI system will react to an insult to her small intestine. I will probably put in a vote with my family, whether or not to do this. I am very happy that they are all very involved in her care and keep themselves well informed.

Time to finish scrubbing.

A Decision To Make

Well. It has been an interesting couple of days to say the least. I first realized that the tube was probably out of place the night of the 31st i do believe when I dropped Q's feeding rate down to 35 ml/ hr and her stomach was still acting up. I checked the residuals in her stomach and sure enough, she had an entire 60 cc syringe full of formula in her stomach, probably more. So, I put a call in to the doc on Monday and he said that he wanted us to come into the ER to get her a tube check and get admitted. So, off to ER we went, and of course, mommy was right the tube was in her stomach. and we were admitted to the hospital. The very next morning, they wanted to just try and do a conscious replacement. I agreed to it thinking that if we could at least avoid another general anesthesia, we could go home sooner. Well, that was just torture. They did TRY it and it was pretty painful for her and traumatic. Due to her anatomy, the procedure took a long time, so she was very upset. We THOUGHT it was in and so we went to get the tube check and, well, it was unsuccessful. So later that afternoon, Quinn got put under again and she had the procedure done. The doc said that she will need to continue to be put under for future placement because the tube is just too hard to get in without going in with a camera through the esophagus. .... sigh...

so, according to the Xrays. Quinn's stomach is still airy all throughout and still has some impacted stool. The doc said that Quinn's motility is definitely very slow. Her motility is just bad, but at least it's moving. Hopefully it will get better.

We wanted to start up tube feeds shortly after, but we had to stall and Q had to spend another night due to the nausea from the anesthesia. She was not able to keep down 2 sips of apple juice and so we had to give all her meds through IV and start her on some IV Zofran for the nausea, stalled her feeds until way later, and hoped that the fever and nausea was just from the anesthesia.  She had some serious diarrhea and we were up all night dealing with wretching and that. It was just a rougher recovery for her than normal. But I was hopeful that it was all we were dealing with and thankfully, it was. By morning, the Zofran had worn off and she was able to eat breakfast and keep it down without wretching. And so we were discharged! yay!

Unfortunately, this is a temporary fix. This is the second time in less than two months that Quinn's J-tube has coiled back into her stomach. She hasn't even had it for 2 months. The doc doesn't anticipate it lasting much longer. We were told to think about some other options. Both the GI docs recommended possibly doing a separate J-tube. This is a surgery and a completely separate tube. this tube would go directly into her small intestine and it would look just like her g-tube, except in a different location and she would still have the g-tube. I asked them both if this would be their recommendation and they said that since she is obviously doing better with the J-tube, this would probably be a good idea for her. Still concerns me that we are having to do more stuff with her stomach. My biggest concern would be if this messing with her gut more would cause even more problems. We can't continue to put her under every couple weeks for something simple such as this. She is at risk for breathing problems and infection each time she is in the hospital. and honestly, i can't stand being there. It's hard to sleep,

 This is our puppy we got a couple weeks ago. She's so sweet. A Chueenie! (chiuaua-weener dog mix)


So, next week we go on vacation for my brother's wedding. Thankfully all this happened before our trip! Hopefully, we don't have any emergencies when we are there. We will be gone for a week in Washington. Q is the flower girl so i will take pix!

Tummy Troubles and Temper Tantrums

Quinn is having a hard time with her stomach again. The way it has been since last month, is we give her multiple small meals throughout the day by mouth and then feed her through the J at 50 ML / hr overnight (2 cans). This has been working out for us. some days we have an issue, but it's resolved within 24 hours usually. But this past week has been TERRIBLE!!! Ok, maybe not THAT bad, we are still at home afterall, but it's the behaviors that i'm having an issue with.

It's obvious when Quinn's stomach and intestines are not working as well as they should be. She gets very bloated, very tired, very cranky and she has issues pooping. I have been having to wake up and turn off her feed because at night, she wakes crying about her stomach hurting her. OR wake in the morning with the christmas tree all pushed out and all her stomach contents and bile in a pile on the bed. She tells me all day long that she needs to be vented, that she ate too much and that her button is itchy. This causes it to get irritated because she won't stop messing with it. The very funny weird and sucky thing about this is that she acts like she is starving all the time, usually only when her stomach is messing up! And this is soooo AGGRAVATING for me because YES, i want to feed my skinny child who thinks she is starving. and Do I? Sometimes because she is hungry, but this causes even more issues! She eats, then bloats again and then the cycle continues over and over again. I try and give her t hings that are easy to digest, but I'm not even kidding, she is all in my face about food! i have to hide myself from eating in front of her! I am not starving her. I swear to goodness I am not starving her. Her stomach bloats, she gets in a lot of pain, she cries and it just seems that her entire health takes a bad turn when her motility goes to crap. and I just don't know what to do about it. Sometimes, i WISH i had a child who hated food. Or at least a child who only ate when she was hungry, but Quinn lives by food, she is motivated by food. she practically worships food. And yet, it is like a poison to her. I hate telling her no that she can't eat. I am the food Nazi. Mealtimes in my house are NOT fun, but not because I have to force my child to eat, but because I have to force her NOT to eat. And I don't know how to deal with this. We spent the first year trying to get her to tolerate foods and eat and drink enough to counteract the constant vomiting. The gtube was put in, not because she wasn't eating, but that she wasn't eating enough to sustain adequate health. The past couple years have been spent trying to keep her off the feeding tube so she can eat eat and eat some more and she DID eat, eat and eat some more, but she STILL needed the extra calories through the gtube. and now we are dealing with this slowing down of her intestines and she still just wants to eat and I think the drive to eat is even stronger than ever and I have to tell her no.Who tells their skinny, underweight, child that they cannot eat?

These behaviors surround around food. Anything that has anything to do with food, Quinn involves herself in. She has even gotten to the point of coming up to me in this cute little puppy dog eyes and this cute little mini mouse voice and says, "mommy, do you still love me?" and  I say "of course, sweetie, i will always love you." she says "well then, could you get me a snack?".... This was cute and worked the first couple of times, but now she does it EVERY DAY, MULTIPLE times a day! Now she comes up to me and says "mommy, do you still love me?" and I tell her, "yes i do, but I'm not getting you any food" and she runs off crying. I feel like all I'm doing every day is scolding her, all because she wants snacks and food and I can't give it to her! Literally, i give her a sandwich, she bloats up,  I tell her to wait for it to settle, she tells me 5 mins later that her tummy hurts and she needs to be vented. I vent her. then she says she feels better and wants to eat some more food. I tell her no, and that she has to wait. she goes and plays, 10 minutes later she is in my face about wanting food again and this cycle continues! it's like she is obsessed with wanting this food that her body doesn't allow her to tolerate! I give her motility meds around the clock! I give her mirilax every night she doesn't have diarrhea. I vent her, I hook her up to her j tube. this just doesn't stop! I don't understand this!!!!

The strangest thing about our predicament is that when she is NOT having issues with her stomach, she is NOT so obsessed and driven by food. How is it that when her body refuses to work properly, and when she is suppose to be full (according to all the textbooks, early satiety should be common), she is begging for more food! I want her to eat. I want to see her eat and be happy with the amount she eats. i want her to eat the amount her body lets her. I want her body to let her eat an amount that sustains proper nutrition. If i could just get one of these wants, I'd be happier. Right now, I'm frustrated. i'm frustrated because i don't understand how to punish a kid who throws fits because mommy said she can't eat. i'm frustrated because I can't eat in peace without my skinny child begging me for pieces. i'm frustrated because I can't go to a Bar B Que or restaurant without coming home having to deal with her huge stomach ache. I'm frustrated with myself because sometimes, I feel that just letting her eat, and be in pain is better than having to deal with a temper-tantrum-screaming 4 year old at that one moment in time. i'm even more frustrated because her stomach motility is entirely inconsistent, which makes for dealing with her hunger even harder. One week, she can eat 3 meals and 3 snacks, one week, she can't even handle one meal.

Every time I am invited for dinner, I seriously hesitate because I just know ppl will want to feed Quinn, Quinn will take advantage of this and other ppl don't understand that this tiny child shouldn't eat so much. I literally MAKE my family and friends touch Quinn's stomach to see that I am not joking around about this. When Quinn's motility is bad, Her stomach gets rock hard. THEY don't always have to hear about how she complains, bout the cramps, about how she will be walking and just double over in pain from her stomach. about how she cries out because her "butt" hurts her. They don't have to wake up to beeping alarms or wash sheets at 3 am because there was too much pressure in her stomach and so all this bile and puke leaks out. They don't have to wonder if seizures and lack of oxygen is because of how much she might have eaten this day. At least not always.

So, for right now, at this very moment, since I am unsure of HOW to deal with this, since her stomach is obviously acting up, starting tomorrow, I'm putting her on only J tube feeds and liquids throughout the day for one week and continuous oxygen to see how much better we can get this situation under control. and if she does well, that's how i'm gonna keep it, for my sanity and for hers. (maybe, I honestly can't stand not feeding my child. If i wanted this job any easier, I'd probably just keep her completely NPO for a long period of time, but I want her to be able to eat.) Joe, my boyfriend, is amazing. These kinds of decisions were really hard for me to make on my own because I always feared if I was truly making the right decision. Having Joe around, someone who sees what I see, someone who understands my frustration, who can take a little of the weight, someone to make suggestions and come up with a plan of action for the coming week, that matters. That matters a lot. So Joe, if you are reading this, THANK YOU!

A Wonderful Appointment With GI!

Well, we had our GI appointment today. I love that feeling of walking out of the office with more answers than questions! it's truly a rare feeling to have after such appointments! I think Quinn's GI doctor is my favorite! He's so informative. He doesn't have the "God" mentality and he isn't afraid to admit when he doesn't know something. Not only that, but if he doesn't know, he finds out!

Well, first thing's first, Quinn went into this office completely unconnected and walking around and looking spunky! This is always a good thing when following an admission. She had good color, a good walk, her eyes were bright! The nurse is the same nurse we see every time we go and she commented on just how well Quinn was looking! Quinn's weight is still down from where it was a few months ago. she's coming in at 35 lb. but honestly, i KNOW she is gaining it back because she lost a ton on that hospital stay. She looks much healthier than she did a couple weeks ago so i anticipate that she will at least be a pound heavier in 3 months, God forbid something happens in the next 3 months.

We recapped the last hospital stay. I think i was misinformed because Quinn didn't actually have a true bowel obstruction. It was something called pseudo obstruction (CIPO). He said that her problems could get worse or better. I asked him again about her anatomy in her stomach and if we can fix this. He said that although Quinn's anatomy is different, he feels that this is not contributing to the bowel dismotility, or it isn't contributing enough for a surgery to even be of any benefit. When Q was in the hospital this last time, her entire bowel wasn't moving anything. this was just her stomach shutting down for a little bit, for no known reason other than a probable neuromuscular disease (or mito). this had nothing to do with her stomach's anatomy. the only thing that is concerning about her anatomy is just that the j-tube is harder to put in and has a higher risk of coiling back into the stomach, thus triggering the possibility of more anesthesia.

That was pretty much all we really talked about. he answered all my questions and he said that due to her stomach's unpredictable motility, he wants to try her on something called Flagyl to treat the baddie bacteria so it doesn't grow (only to be administered during periods of excessive distention). This is debatable because One of my long time friends who has a Mito kiddo said that Flagyl is not good for mito children. Since we have no "true" diagnosis of Mito, i'm kinda like... you know, hesitant about trying it and not trying it. She is diagnosed on CCS paperwork, but her case was moved to Dr. Boles in CHLA, on my request, for further investigation on whether or not this diagnosis is a valid one. Sometimes, and maybe only during her good days, she just seems too healthy to have mito. But sometimes, I read her history, flip through her labs and pick through my memories and I think, how could she possibly be too healthy to have mito? I just want to know for sure, once and for all. a straight up answer, no gray areas, no in-betweens, or questionable labs... I just want a doctor to look me in the eye with all records in hand and knowledge of her history and tell me without a shadow of a doubt that my daughter does not have mito. Hopefully, that day will come and it will be a good day. A good, happy, smiley, sunny day.

The above picture is of Quinn and my mom. Quinn calls her MeeMa.

Smooth Sailing

Well, life has been smooth the past couple weeks. Quinn has her days, days when her tummy hurts, bloats up, slows down, days when her legs don't want to coordinate with what her head tells her to do and days when you can just see in her eyes that this day is not a good day. But, these days have been fewer and Quinn seems to be happier, thriving and showing her personality. And boy, I mean her little miss prissy princess personality! Now that she is talking more, she is bossing more too. Ah, but it is cute. She loves reading her books. Though she doesn't know HOW to read really, she can pick out a few words and help me out. words such as "the", "a", "go"... this is so exciting to stop on a word and hear her finish it!!! I will read her a story a couple of times and later, catch her in the act of "reading". She remembers some of the story and she "reads" it aloud to all her stuffies.

Quinn is gaining weight now again. That's just awesome because I was getting worried about how very thin she was looking. It must have just taken a while to show. She seems to be doing well on the jtube feedings. We had an issue with pressure in her belly and it pops the christmas tree off her feeding tubee and causes her belly to drain everything and then a TON of bile. though I'm not sure if there is anything I can do about this, she hasn't had this issue in almost a week so hopefully things are starting to get better in there.

Things have been so normal here, it's hard to try NOT to get comfortable. Sometimes I wonder if things are normal just because I tend to keep Quinn in two environments only, in hopes to not tire her too quickly and keep her healthy. She literally spends all her days at home, or at my mom's house. I take her to the park sometimes and little places here and there, but that's just about it. when school starts up, this might become an issue again. And then all my hard work will be put to rest. But, I can't dwell on stuff like that. Quinn is Quinn and these are just issues we have to deal with. These are issues i'm willing to deal with if I want to give her a chance at a normal life. Besides, I know things could be worse.

Quinn said goodbye to her teachers a few weeks ago. She wasn't able to say goodbye with the rest of her class because the ceremony was the friday she was in the hospital and she was still too sick to go to that. so we came back and said goodbye. these teachers are sooo supportive!!! It makes me feel less crazy. It's one thing to have my families on my side, but it's a whole different ballgame when people like her teachers are able to see these issues with Quinn and be supportive! I mean, they watched her from the beginning of the year, she was in school, she was eating normal foods, she was never on oxygen (though they had it just in case), she was strong and just like a normal child! they watched the reality of this unknown disease unfold right in front of their eyes! and they are the ones who were very assertive in how this change took place. It started with her just looking extra tired, then she started having seizures in class and throughout the school year, Quinn started needing more and more oxgyen, less and less days at school, until it got to the point that she had to be on oxygen and feeding tube 24/7. this is a significant change in just one year. So when we went to say goodbye, this was very emotional for a lot of them because they have all grown to love Quinn. If I have my way, Quinn won't be going back to that facility. She will be at the facility closest to me. A lot of the staff from this one switch to and from these two facilities so it won't be too too bad, but she just needs to be closer to me and my mom so we can take shifts on who stays with her in the classroom this way she might be able to be in class more. the teachers weren't thrilled when I told them what I had hoped for next year, but they were understanding and promised to visit Quinn in the new facility.

I am truly trying not to get comfortable with how well things are going right now, but as I said before, it's very hard not to. I'm suppose to sign up for school, but I STILL haven't yet. I know it seems foolish of me, but it's draining to sign up for a full semester and have to drop classes because Quinn becomes ill. It makes me feel like a failure. and semester after semester, this has proven to be the case. it's like when Quinn gets sick and needs more care, or when she goes inpatient, I feel like a bad mom if i DON'T spend that time with her and see her through her illness, but then, if I drop classes, I feel like I am failing at being a student, so either way if i have to find the strength to get through one, I am too hard on myself and I feel like i'm failing the other. It's still no excuse to not sign up for classes and get through another semester. I'm years from my goal and the longer I wait, the longer it will take. So I just have to suck it up.

Some pictures for my readers.