Sick House

At least for me! I feel so icky right now! I can't breathe out of my nose, i have a headache, i'm hot. This is NOT very fun. for Quinn, her stomach is being dumb. Started yesterday with her begging me for food even after I just fed her! Sadly, this is the first sign that her tummy is being wonky. She hasn't pooped (that i know of) in 3 days. Last night, I pulled up to my sister's house, parked, turn towards Quinn in the back seat and witnessed yet another seizure. My poor kiddo! I HATE seeing her have seizures. It breaks my heart. You feel so helpless and there isn't anything you can do about it. She hasn't had a seizure since her meds were increased back in Jan/Feb and they were increased by a lot based on her weight. Well, Quinn hasn't gained any weight since then so i highly doubt we can go up on her seizure meds. Might have to try a new one out if anything else. She's also gagging and wretching a lot. This is a new symptom. I know a lot of children who have the same issues as Quinn deal with this all the time daily, but this is a new thing for Quinn to be doing this constantly so I think it's something that needs to be addressed to the doctor soon. Anything sets her off on a gagging/retching fit. She could just cough and suddenly go into a gagging episode for about 10-15 minutes. I'm pretty certain that her fundo is still intact due to the fact that she never throws anything up. so of course this is a good thing. One of the things that scares me the very most is that gagging is what set her off on a huge seizure back in January when she had to be admitted to the hospital for them. So, yeah i get flashbacks when she starts gagging. It's almost like i sit here and wait for her to collapse into my arms and go completely limp.

So this morning she came and woke me up and said to me, "Mommy, i think my stomach hurts." I asked her to point to where she was hurting and she pointed to the middle of her chest and to her left side. I got up, didn't feed her breakfast because she doesn't necessarily need it and i didn't want her to feel even ickier, so i got her a little bit of juice and she drinks it up. 10 minutes later, she is gagging and retching again. She says she thinks there's a frog in her throat <--- LoL! I'm sorry this is just cute how she tried to describe how she was feeling. If this continues throughout the weekend, i'm going to put a call into her GI doctor and find out how he wants to go about treating this. I'm going to go ahead and give her the "as needed" bowel meds and hope this helps her start moving things along. I'm REALLY hoping that she is not having another pseudo episode, but this path seems very similar to what we dealt with in June.

PICTURES!!!

I'm only going to post a few, but as days go by, i'll keep posting. these are mostly from our Washington trip.

Small update: Q is doing well, but she is loosing weight again, slowly. Unfortunately 35ml/hr, even if put at 24 hours a day is not enough calories to support her. So, although she is doing GREAT without so much stuff in her body, she is not getting adequate nutrition. This has left me with a small, decision to make. A) increase her calories by increasing the rate at which I feed her or B) allow this to continue until she gets her jtube surgery. My decision: See what the surgeon says as far a sustaining her until we get this surgery. YEP! we got a date for our surgeon consultation. It's on Thursday of next week (the 9th). We will be discussing options. either for fixing her anatomy, or going through with the j-tube procedure or even both. We will be discussing the pros and cons of both as well as asking lots and lots of questions about her long-term care when it comes to both of these options.

as far as this gagging retching thing. She hasn't been as bad as she was that one day... i'm not sure what caused it, but she is spiking fevers off and on recently, but only up to like 101 or something, nothing major but nothing is sick it seems. I don't think its any kind of infection, though I also don't know what else it could be. We took her to the pediatrician so he could fill out paperwork. any kind of question i have for him regarding her care is basically reverted back to "well, what do her specialists say about it?"... honestly, i can't expect much more out of the pediatrician anyway so we just deal until we have to seriously worry. That is our life. Quinn will let me know when something is seriously not right. we learn to deal with the daily complaints of stomach pains, leg pains, "butt" pains. it is what it is until we know what it is. <--- does that make sense?

She is still not in preschool. We are STILL waiting to hear back from the state nurses so we can have this pre-enrollment meeting so we can get all her paperwork in order so she can join her friends. The yahve been in school for about two weeks now, but she is still unable to attend. *sigh* I hope those lazy nurses can hurry up so my child can learn stuff! and I really hope it's not this way for kindergarten. it's bad enough taht she will need lots of time out for her surgery and we just don't know what the rest of the school year will be like. I'd rather have her in there while she is healthy and capable!

And pictures!!! Enjoy!

my little flower girl!

Me and my little brother... who is now married!!! omg i can't believe it!

Q's Mad Face

Q's Happy Face!

MY NEW ALL-TIME FAVORITE PIC!!!! 

 

On Sick Watch

I dunno what is going on with Quinn right now, but something is wonky. She woke up this morning just crying and crying for me and I went in there and she was rolling around on the ground saying that her armpits just hurt her really bad. So i'm trying to find a reason for her armpits to hurt her and i can't find it. She was crying about it for like 10 minutes. She was like "mommy! I think i'm in pain!"... poor kid! I think there are lymphnodes under there, but they weren't swollen at all. She is not really feverish, but her cheeks are red. So i gave her some juice and told her to just lay down in her bed for a little and take a rest and maybe the pain will go away. So she did just that and then I hear her starting to choke, so i come in there to figure out what is going on and she is trying to throw up and I asked her if she was ok after it was all over and she was like, yeah, i just choked really bad. So i'm trying to hunt down her pulse ox, in which we can't find since our Washington trip to find out if her oxygen saturations are ok... with her armpits hurting her, it could be her chest, and that worries me for pneumonia, but I can't find the darned pulse ox so i just turned her o2 up a liter to 2.5 liters. She has been retching all morning still, even while i'm typing this.So today, i'm just going to watch her very closely.

All the other classmates started preschool this week, but Quinn is not in there. the nurses at the main office won't call me or the preschool back to schedule a time to meet with everyone about Quinnn's "condition"... I'm hoping that this year, Quinn will be able to stay in school iwthout me. this will give me a much needed break. But nothing will happen of those lazy nurses won't return a phone call! this is not the first time it has happened. Last year, when Quinn had seizures in class, they asked that I take her out of school to give her a little break for about a week or two. And so i did, but they didn't return any calls and we couldn't get an approval to go back to school until almost 2 months later! This is just uncalled for! so, I can't really do anything until the nurses get back in touch with the school and then we have to have a meeting and then some more paperwork and then she can hopfully join her friends in the classroom and learn and socialize with all the rest of them.

Tomorrow we have the nurse coming out to review her case. Quinn is on a program that pays for care, fortunately, I am the one that cares for her. The nurse comes out annually and so she will be here tomorrow and I am suppose to report changes in her care and we are suppose to calculate the hours of her care again to determine if her hours can be lowered or increased. I'm gonna shampoo the carpets. i'm sure it means nothing to her to have some stains on my carpets, but it annoys me anyway. We live in the desert, so if any thing wet, such as medication or water comes into contact with the carpet, it leaves a dirt stain and my carpets are a cream color, so it looks much worse than it really is. but i wanna take care of that anyway.

I dunno why, but i love the above picture. something about her pretending to watch TV with her stuffies it is just so cute!

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!