o2 trouble

Well, I called to order some more oxygen tanks for Quinn on Wednesday and much to my surprise, the company tells me that they cannot deliver tanks to her anymore because insurance has denied her oxygen. They claim that she does not have a supporting diagnosis and that we have to have some sort of "proof" that she needs it. The o2 company told me that I have to take her to the hospital to have a daytime pulse ox study. I called her pulmonologist and they told me that they still have to provide her with o2 until she gets the studies done. I called the company that is suppose to come out and do the nighttime pulse ox reading and they said that they wouldn't be able to come out for another month at least. (which is what they told me last month)... I'm so incredibly frustrated because it's quite evident that the oxygen has been helping her... ALOT! Recently, she was placed back on her o2 24/7 (recommendation of her pulmonologist) to see if it improves her seizures, balance, coordination, exhaustion and etc. Even though it appeared that her saturations were very stable, this was just to see how things go and if she improved, she needed o2. Well, we noticed a marked improvement overall when we did this for her.

We had a PT eval... I don't know... last week or something and the PT asked to take her off her o2. So she got out the pulse ox so we know if we were over-working her. She was fine, saturating at about 95-97% on room air, so we started activity for about a minute or two and then checked her and she would desat all the way into the low 80s, sit there for a minute and then come back up to the low 90s. She did this 5 times! Every time we started activity while off o2, she dipped. So, to me, that was a clear indication that she probably does need the o2, particularly while active, and this may be the reason why everytime we are in the docs office and she is in her stroller, she has pretty regular sats.

So anyway, because I couldn't get any tanks ordered, I had to take her to school yesterday without the oxygen. I LOVE her preschool teachers! They are SO awesome with her, so in tune to her health and daily well-being. they have seen how the oxygen helps her and were floored when i told them that she was denied coverage. Every day, they take readings of her oxygen saturations (twice a day usually) and record them on a chart indicating the date, time, saturation reading and if they had to turn her oxygen up to bring up her number. She HAS had days where she is in the 80s while in school. So, yesterday, since she was off o2, they decided to take her oxygen readings four times within the two hours that she is there. The first reading at 850 read 91%, the second at 1000 read 89%, the third reading at 1030 read 90% and the fourth reading at 1100 read 95%. These numbers are consistently lower than her average reading of about 95% while on o2. They also commented that she was a bit more tired and her eyes were droopier. Obviously, Q should be on her oxygen all the time. They document everything, which is such a blessing!!! So now the big questions that the teachers were asking me is, at what point do they call me or 911 if she is having low oxygen readings because she is SUPPOSE to be above 92%. I had a hard time answering that. I told them that if she is acting very exhausted, turning blue, or just totally out of her norm behavior, to call me and I will come and get her.

So yesterday i brought her home and checked her o2 reading and it was as low as 80%. I had been checking her all throughout the afternoon. She did have moments when she was above 92%, however, she was low most of the time. One time I even caught her looking very pale and I check her and her HR was 213 with an 86% saturation. I checked myself immediately after and it seemed accurate. checked her pulse and could barely feel the pulse her heart was pounding! She does do this sometimes... and a lot of hte times, it's accompanied with chest pains. She seemed to stabalize a couple minutes later. I decided that, although we have no tanks, we do have the concentrator at least until the o2 company decides to come and take that. So we are just keeping her on the concentrator. She perked up pretty immediately after I put it on and her color returned <--- i didn't realize how pale she was until she wasn't pale anymore.

Here's the crappy part... Quinn's pulse ox study is a nighttime study, so I was checking her sats while she was sleeping and at nap, she was 99% on room air... of course she was... and then I checked her last night on room air and she was 93%, but I never saw her dip lower than that. I saw it climb to 95% a few times, but typically it was 93% (remember, this was jsut me spot checking her because we still don't have a continuous pulse ox) So, i'm fighting the oxygen company to please provide her o2 until she has her pulse ox study done. If that is normal, i'm going to fight them to have a walking pulse ox study done where they hook her up while she's walking for 5 minutes. and i'm going to get the records from her PT session for proof that this request is not unreasonable.

I just think all this is ridiculous... as someone mentioned... because she can't desat on command. <--- haha!

Other than that, Quinn seems to be doing well. If we can't get tanks for her, she won't be going to school. I don't want them to have to deal with seizures and i don't want her to start seizing on me. We still don't have a date set for her J-tube surgery, but hopefully soon.

How she looked yesterday before we put her back on o2

These are from the pumpkin patch last week

The Muscle Biopsy

Well, we face a delema. A challenge if you will. Quinn's neuro called and she is hesitant to do the muscle biopsy on Quinn before Quinn goes to see Dr. B in CHLA. The reason is because she does not want to get a piece of tissue, only for her to see the doctor and for him to want different testing on her. She basically wants her to see Dr. B and then go off his decision on what to do. She said they are getting so close to recognizing mito in blood, that she might not even need a muscle biopsy. So crazy! I see all these other children getting biopsies with no problems what so ever, but it's like pulling teeth out of a lion to get her one. I can understand her concerns on this. she doesn't want the biopsy to be contaminated and she doesn't want tests done on the tissue, only for her to have to go under for another sample and another biopsy because the tests ran weren't the right tests. It makes sense. It is risky putting Quinn under multiple times and I think she is also concerned about insurance issues. If the biopsy was done wrong or additional tests are needed that can not be done on the biopsy, insurance might not approve an additional biopsy. Basically, she wants the opinion of Dr. B and the tests that HE wants done to be done. She did her research and she consulted with a pathologist for Quinn and has been talking with a lot of doctors about Quinn's case and she said that Dr. B is a very well known doctor and is incredibly respected. So, basically, we are going to just to the J-tube surgery and not worry about the biopsy. I was actually surprised that she herself called me. This hospital is not known for doctors to speak personally over the phone. normally messages are conveyed through the nursing staff. So it was pleasant to get a call... we went over a few things as well, it was like having a mini appointment. Q is definitely not absorbing her meds correctly due to her motility and we discussed that. She also wants to do another EMG on Quinn because this might give Dr. B some answers as to what kind of testing to do on Quinn. Her last one was done about 3 years ago and it was normal. if this one comes out abnormal, we know that she is suffering from a muscle wasting of some sort.

So, finally we got all this figured out. Quinn is still having a lot of stomach pain, but I have to admit, she looks very good right now on her new formula. her face is filling out, she looks very healthy, her endurance seems to be improving. I'm seeing no seizure activity. She's not as tired. not "checking out" as often, her color is wonderful. no more pale/dark circles. Teachers at school are commenting on her well-being (in a good way) She seems sturdy, all around, things are looking pretty good. We are still however dealing with a lot of bloating and stomach pain and this is quite typical for her and the WHOLE reason why we started the j-tube journey back in May. So in that sense, nothing really has improved and we are still going through with the j-tube surgery <--- but I think we can get it laproscopically now instead of open so might cut the recovery time!

One of my biggest lessons I am seeing right now is that when Quinn is getting what she needs, she does so much better. This means that although she looks GREAT right now and I would LOVE to take her off all the medications and oxygen and see how things go, we just can't. We've been down that road countless times actually and it usually ends in disaster. The thing that sucks about it is that it's so strange seeing a child that looks SO GOOD outwardly on oxygen and a feeding tube all the time. i can't even imagine the kinds of things that must be going through people's heads when they see this little bright, happy, normal-looking girl hooked up to tubes. But, the people who are close enough to know us for longer than a day have to witness the pain and it's not fun. She hurts so bad if she eats anything more than a cracker or is on the pump for longer than 5 hours. But, the pain is something that we have to deal with so she can be healthy. Hopefully the Jtube surgery will minimize her pain and allow her to absorb her medications better.

Quinn still has this cough that isn't going away. That's really all it is... a cough. It's just staying there. sometimes i feel like it's probably related to her RAD because it seems to have days where it's worse than others, but she does cough a lot daily, and sometimes this causes her to go into a gagging/retching fit. Q tells me that it hurts her stomach and throat to be coughing so much and i don't really know if it is worth it enough to take her in to see the pediatricians because of a cough that has no other symptoms.

We went to the pumpkin patch this weekend and it was great! I have more pictures, but haven't put them on my computer. I'll probably post them later this week.

Below is just a small example of why Quinn would probably benefit from a Jtube. This is a portion of our daily battles.

A decision for Q and coordinating Medical Care

First of all I must say that NOTHING stresses me out more than trying to coordinate all of Quinn's medical care. It's the P's and Q's that are annoying... making sure all the i's are dotted and all the T's are crossed... it's just PAINFUL! If a doctor doesn't write an order correctly, or the insurance doesn't take a certain diagnosis, or waiting for authorizations, appealing denials, having our medical equipment delivered only to find out that they forgot to bring her 10ml syringes.... getting adult nasal cannulas instead of the pediatric ones... trying to get the right paperwork in line for referrals... it's just a very stressful. For me.... very very stressful. I am in awe of the mothers and fathers who can do this kind of stuff naturally, for me, this kind of stuff is incredibly tiring. Add ALL of this on top of us moving into a new location... now i'm having to give my new address to every company, every supplier, and all my bills and bank. <--- that's just normal stuff, but ugh! so frustrating.

but yes, we did move into a smaller home, in hopes to help with the financial overload we've been struggling with lately. I love the new home. it's so cozy! I'm having a hard time finding places to put our many things we have collected over the years, but things are working out nicely. I've donated a few good toys that Q will never play with to a couple local thrift stores and have almost finished her room. it's so cute!

On to our decision making... We saw Quinn's GI doctor recently and did finally get the results of her seizure medication... whether or not she is absorbing. It seems that she is and she isn't absorbing her meds through her stomach. keep in mind that Quinn's seizure meds.. she is on 3 of them and is maxed out for her weight. her Trileptal seems to be ok but her Keppra is very low. We were told that we could increase he Keppra and Zonogran based on if she starts having more seizures. Well, quite honestly, i'm not ok with increasing any seizure meds if she is maxed out since Quinn's motility fluctuates. if we increase, on days when her stomach is acting ok, we would be overdosing her. So, if she starts getting seizures again, we might have to find a new way to give her these medications. A bridge we will cross if we have to, but for now we are not at that bridge yet.

Quinn's GI doc gave me some tips on how to manage Quinn's bowels. he wants to try her on this different motility medication, but it is not yet approved for children. it's mainly for adults. It is something that we discussed, but we haven't made any plans about it yet. He said that insurance will likely not approve it for her since it isn't FDA approved for children and so it's a battle we can do without for right now. But basically, you have to actually prove it is working in order for insurance to approve it and I think it would require a hospital stay. For now, unfortunately, Quinn's motility sucks. so what we are doing for her bowels is pretty much the brunt of what we can do. We are adding more mirilax, even though we can't really get the fluids into her that it requires, he said if we just add a lot of mirilax, her body will have a better chance of absorbing it if we just load her up with lots. He wants us to space the dosages over much of the day and we are hoping to get her pooping every day soft poos.

Quinn's GI doc has a good relationship with her surgeon. her surgeon is also the director of pediatric surgery, so I really felt that Quinn is going to be in good hands. He did her nissen wrap and it's actually still intact : ) The GI feels like the J-tube will be very beneficial for her. So, we have come to a decision, finally in this. Quinn's GI doc is a very good doctor and I fully respect his opinion. Her doctors have all discussed Quinn's plan and all of her doctors are in agreement that Quinn will likely benefit from the J-tube procedure. Both for pain and overall quality of health. We are going to go ahead and go through with the procedure. this surgery was in no way an abrupt decision, it has been discussed very thoroughly and we (docs, family, friends) all feel that the benefits outweigh the risks (her seizure medication absorbtion through the stomach is minimal). We also feel that she is currently stable enough neurologically and nutritionally, and therefore would likely encounter minimal complications if any.We are at peace with this decision and are hoping and praying for the best outcome. Right now, we are just waiting on paperwork from her neurologist for the muscle biopsy, what a pain in my butt honestly! It's been 3 weeks and I'm so exhausted from all this. I want this surgery done before we get hit hard with the winter season. It's bad enough being in the hospital, but even worse when it's wintertime. not only are the staff totally overworked and worn out, but also LOTS of bugs tend to make their way through the hospital during winter, so more chances for infection. next week, i'm totally cracking down on the phone calls and will be making sure that the paperwork is finally processed.

 

 Yes, this actually CAN happen! don't ask me how because I have NO clue lol! (that's her feeding tube)

 

 

My Big Girl! Giving her OWN meds!!!

Medical Stroller for Quinn!

Woo hoo! we are finally getting a medical Stroller for Quinn! The one that we are getting looks very medical, but we really needed something to be able to hold the E tank and so they ordered a Quickie Zippie for her! http://www.austechmedical.com/manual-quickie-zippiets.htm  they are even going to put her name into the seat, which is totally cool! They came out to our home and took measurements. It's going to have an IV pole, a tilt option and we can fold it up and put it in our car. It also has bus tie downs. One of the biggest things is being able to hold the tank, since that seems to be our biggest hassle. I really hope insurance doesn't take a long time to approve it. Quinn of course, chose the sparkly blue color. she LOVES the color blue : )

In other news, Quinn seems to be doing ok. We are still having the same stomach issues. She's taking 1.5 caps of mirilax with water throughout the day, 4 doses of 5ml of lactulose, plus 1 tablet of senna and she still seems to be getting backed up and pooping out hard stools.... sometimes diarrhea and this comes with some stomach cramping too. And of course, lots of bloating still. We are going to see the GI doctor next week, and get his opinion on how much we are giving her in laxatives and such. It just seems like she absolutely cannot go without laxatives anymore, so i don't understand this and I hope we can figure out a better bowel management. I give her prune yogurts and probiotic foods too. Seems motility has slowed down pretty significantly recently.

Quinn is also still unable to shake this cough that has been with her for at least the past two weeks. It doesn't seem to be causing her very many problems though, it's just a cough. I've been contemplating on whether or not to take her to see the pediatrician regarding this cough, but it just seems like such a mild thing to be going to the pedi for. He'd probably tell me nothing anyway. LoL!

And still no word from surgery on a date. I think my family and I have all been debating this surgery. It's been many, many months since the Jtube was first brought up. I do not think at all that this would be an abrupt decision. Her docs seem to be in agreement with the surgery. We actually have a pediatrician, 3 GI doctors and a surgeon as well as his staff who feel that this is a good option for her and she is a good candidate for the surgery and healthy enough to not encounter any serious complications. I'd still like to speak with her GI further about this, but I think we have all agreed that it's best to do this when she seems to be healthier than she has been in recent months to try and give her a better recovery. For one thing, they will be doing the biopsy, and for another, if we do not do this now, I am almost certain that this will continue to be looming over our heads for a very long time until it becomes an emergent thing.

We are still waiting on the results of the test to determine if her body is absorbing her seizure medications. We've been getting lots of run-around from the nurses and they keep telling me that a doctor has to look over the results... it probably means nothing... but it's been a week since we drew her blood and I'm so sick of waiting for results... especially because they are likely going to be normal. if they are not good, and she is not absorbing her medications, we can only figure that she is likely not absorbing any of her medications, which could be a reason why her bowel meds are not working. I'd like to know this NOW... lol!

I love it when she sleeps like this.

To do surgery, or not... that is the question

We FINALLY followed up with our surgeons appointment. And although we went through the paperwork process and we are getting the insurance approval taken care of, we are really weighing out the pros and cons of going into this surgery for the separate J.

First of all, Quinn is finally gaining weight! She was placed on this super high calorie formula and she is gaining weight on it! She weighed in at 37lb! which is 2 lb more than what she was even last week! Now, before I actually take into account that it was a true weight gain, i must consider that some of this is likely just formula weight as Quinn's stomach is being dumb again today and it's pretty bloated. And 2 lb in one weeks seems incredibly unreal to me. However... we KNOW she is gaining weight as she looks a bit chunkier so in reality, she IS gaining weight off of 30ml/hr of formula for 16 hours a day. Woo hoo!!!

We wanted to address a few things... first of all, our options and Quinn's quality of life. since Quinn is gaining weight on this newer formula, we know now that she is getting adequate nutrition in her stomach and we can feed her at a slow rate, one in which she tolerates, fairly well. However, Quinn's motility all throughout still sucks! We give her so many *stool softeners* she's on fiber supplements as well and high dose of reglan. This gives her some relief, but she still exhibits daily symptoms of stomach upset, such as the "frog" that likes to "hop in my throat" (Quinn's way of saying retching)... pretty much every morning. She still exhibits stomach pains daily, though it is not at all severe 90% of the time, however it is still daily and her stomach does still bloat up, severity depends on the days when her motility is stupid, which is at least a few times a week (one of those days being today and yesterday). He does not feel that she needs a pyloroplasty now as anatomically, he said that she is ok.

Based on the pain, the daily retching, and the wonderful pictures and videos I was able to present to him, and a little of her clinical presentation... AND the fact that we are likely looking at a mitochondrial disease (funny as soon as I mentioned possible mito he said... OH! well that would explain her! lol) he said the Roux En Y J-tube is not at all a bad option for her and one that he would recommend. For one, with neuro-degenerative diseases, it is likely she will need this for a very long time if not the rest of her life, and he'd be doing a muscle biopsy at the same time.

OR, we could do nothing and keep doing what we are doing currently for as long as possible, which is surprisingly working, however she does not like it much because she is basically unable to eat much more than icechips and teensy tinsy bits of puree throughout the day. And this falls into a Quality of Life type of deal. If she gets the Jtube, our goal would be how it was when the GJ tube actually stayed in place and that would be jtube feedings at night and small portions of regular oral food throughout the day. And for some reason, when we had the GJ tube in for a week, she did wonderful on this! she had nice color, and was really active, however we aren't really sure how much real benefit she got from this since it never stayed in for longer than a week.

Here is MY thinking (and my mom's), i don't want to do the j-tube if she is just going to keep having the same issues as she is currently having. For instance, if it is her motility all throughout that she is having a hard time with, how would a J-tube help her?

Now, I read all the time about children with GJ tubes who are able to vent through the ferral bag, yet are simultaneously getting fed through the Jtube. Is there a way to do this with food? Like, we KNOW food... regular people food is the real issue here. It's just so darn hard for her to digest. But liquids are a little easier. If i were to feed her say... a toddler type of meal, one that typically would cause her issues, would it be able to come out through the ferral bag so she can get the satisfaction of actually eating, but not have to deal with the painful side-effects of it?

We also talked about bowel management. They are really in favor of Cinci. I think personally, her bowels are being well managed here. We have a wonderful GI doc and the docs in the office all agreed with me that he is a good GI. They discussed adding Senna into her daily medication regimen, and it's a route we wil llikely go either way.






It came to my attention yesterday that I am likely not giving her enough fluids throughout the day to allow the stool softeners we give her daily to work (since she poops super hard poop that cuts her booty). This totally sucks because that means I am going to have to tweak a few things to see if she can handle the extra volume of fluids and still gain weight. This is something that we can work on while we are waiting for the surgery approval. Plus, we are going to be adding Senna into her daily regimen. If we can find something that works for her and keeps the pain/bloating/retching to a minimum, we will likely hold off on the j-tube surgery for as long as possible. After yesterday, today she even woke with a bloated belly, although no pain yet. She looks pregnant again. <--- we had been able to keep her belly down recently so this belly thing sucks.

So, it's a lot to think about, obviously, if/when they do the surgery, they will be taking a muscle biopsy as well, and they are planning on taking a biopsy on her abdomen if there is enough muscle, since that is where the surgery will be taking place

                                   I got Q a preschool game... excellent for waiting rooms and sick days

                                       

This is just from her 30ml/hr of formula on for about 2.5 hours plus maybe about 2 ounces of water (icechips) She gets humongous if I try to feed her.

Crazy Deams and an Epiphany Perhaps

Maybe one day I'll blog about a recurrent dream I've had since Quinn was really little, but for right now, I wanted to write about a new dream I had recently.

When I heard of Sammy's passing, I couldn't do very much to get him and his family out of my head. The if only's and the what ifs really took up a lot of my consious and as with most things that are near and dear to my heart, these thoughts usually transfer over into my dreams.

A few days ago, when I lay my head down to sleep, i did not pray to anyone in particular, as I never do. It is not in me to pray to anything. Often, I do believe in a higher being, as it is hard for me to believe that we humans live only to serve ourselves and nothing else, however I struggle with the thought of God. It is after all the human race that has corrupted my way of thinking. I have witnessed so much brainwashing and down right "UnGodliness" in a lot of my family members to turn me enough away from the thought of going to church and serving Him that until I had my daughter, I never gave much thought in there even being one. But, i have witnessed a few crazy things since being pregnant with my daughter that has caused me to question if this God might be watching over me. Sometimes, it comes as a gentle whisper, that is not really a whisper in my ear... more of like my own voice warning me of certain circumstances that might hurt me (this "whisper" once saved mine and my sister's life one day as I truly was within seconds of smashing our car into a stalled motorcycle on the highway and his rider trying to walk it off... man that was crazy... something told me to just get in the other lane). I do pray at night and during dark times in my life. i usually tell people that I'm sending good vibes their way or that I hope this or that... but sometimes, I do pray... to nothing in particular though. And this night, I thought of Sammy and his mom and his family and I just wanted peace for them and comfort to help them through this, as I myself could physically not be there for them.

And this night, i dreamed.

I dreamed that Quinn was dying and we were in the hospital and it was really her time to go and they had disconnected her from everything and I was holding her in my arms and I was waiting for her to pass and she looks at me and she asked me, "mommy, why do you not believe in Jesus?" And I asked her if she saw the light and she nodded and I told her that it was ok for her to believe in Jesus. and she said to me that she wanted me to believe too because she saw Him and He was waiting for her and she didn't want to leave until she knew that I was ok.

Of course I woke up and I just wasn't sure what to make of it. I told my boyfriend and he said, "well, if that's not a sign then I don't know what is." and so we all made a decision that we would go ahead and go to church next Sunday and that way I can try and understand a little more.

I do not like these dreams that I have of my daughter dying and I know i dream them because it is my worst fear. I always fear if I am doing the right things for her, if I am giving her the best life I could possibly give her. I think it is always best to remember to live for today because tomorrow is never promised. And when these fears enter my thoughts and swirl around in my mind like a sick tornado, I think about that saying and it helps me.

Neurology

Well, the day before yesterday, we had our Upper GI Study and neurology appointment and I must say the neurology appointment was awesome.

We woke up super duper early and headed out the door at 645am so we could make it to the hospital in time for check in at 815am for her UGI. It was not so bad. but the lady doing it was frickin way too happy for my liking. Anyone ever watched Grey's Anatomy? You know that Resident who was Izzie's peer counselor? her name on the show is Dr. Sydney Heron? yeah... that's how this doctor was. She was just crazy chippery. She first started commenting on how absolutely skinny my baby was. ( i know she is skinny that's why we need to do something for her) She said that Q has a beautiful swallow, which is just awesome considering that her swallow usually isn't that "beautiful" (she usually penetrates and *almost* aspirates). And Quinn does have a hiatal hernia but otherwise structurally, everything seems very normal. I asked her if she was emptying her stomach normally and she said that she appears to be. So, i have a feeling that everything is going to be normal. We had some time to kill after that (almost 3 hours) until our neuro appointment so we went to a few halloween stores and ate a little breakfast at Denny's.

I took a picture of her stomach after our *normal* exam so the doc can see that we really aren't kidding about her stomach. Q is only on 30ml/hr of formula and she doesn't really eat anything else by mouth.

this is just her normal belly after something is in it. If i were to increase her rate to 40 or 50ml/hr she'd be in a lot of belly pain and her stomach would be rock hard and about to explode. Hence the reason she's only at 30ml/hr. Although this picture is not that bad, all that is in her stomach is the barium (they only put 30ml in her stomach) so in total counting her applejuice from denny's she only had about 4 ounces of anything that entire morning... and spaced over a 3 hour period. A normal child's stomach should not look at all bloated after 4 ounces of liquid. I dunno what she is doing with her tongue lol!

Anyway, after that we went over to our neurology appointment and wow! it was a good one.

We spent about an hour discussing Quinn's obviously declining health. We went over all my questions. We want to know once and for all if Q truly does have a mitochondrial disorder. So, she is ordering a muscle biopsy. I won't accept a clinical diagnosis. i want to know her prognosis, i want to know the protocols and i need to know what meds are safe for her and i don't want to treat something that is just "suspected". This is a HUGE label and a major diagnosis in my opinion and I don't want to play around with it. If she doesn't have it, i want to know, if she does, i want to know. I am so tired of this... "well, we don't know for sure but we think it's this." We are hoping to do the biopsy at the same time she has her J-tube/Pyloroplasty... whatever needs to be done. With Quinn's GI motility, she is very concerned that Q is not actually absorbing her seizure medications, which may be why she is maxed for weight and still having seizure activity. So she ordered a lab to be drawn late in the day (approximately 8 hours after her morning dose of seizure meds) to see how much is actually in her bloodstream. if it's low, we need to figure out another way of giving her the medication. And if that's the case, makes me wonder if she is actually absorbing all her reglan too... or any meds for that matter. but we will cross that bridge when it comes. I wouldn't be ok with her increasing the seizure medications since they are already very high doses and her motility fluctuates. She was very concerned that Quinn had not gained any weight since the beginning of August and actually lost since the beginning of the year. Which i know has to deal with her stomach motility. All of the symptoms that we are describing with Quinn (her "spicy" hands and feet, how she can't feel her cheeks sometimes, her ataxia which may be due to a lot of things and her pure exhaustion and etc) she feels that if we can get this mitochondrial diagnosis... truly get it, we can chalk it all down the an energy situation, and that would make a lot of sense. Yeah... totally does. She said it could be neuropathy, which if she has mito would be a progression of the disease, but we just need to know if this is what we are dealing with before coming to any real conclusions.

So, she is going to refer us to Dr. B in CHLA for a second opinion. we got a big ole pack of paperwork together and she is gonna fax it over for us! woo hoo! I did try to see if we could get in to see Dr. K in Houston, but we can't. they won't take our insurance. So, Dr B it is! She also wants us to start on Co Q 10.

She totally remembered Quinn's MRI from over a year ago! lol that was actually impressive. She wants to do another MRI to see if there are any changes. The last one showed some very, very minor abnormalities in her white matter. She's putting some paperwork in to get Q into PT, but only for an eval and medical stroller through our special needs insurance. And uh... yeah... lol that's about it. geeze we went over so much but it was truly a good appointment! This mito diagnosis might be a dead end, and we may never actually know what is going on with Quinn, but I'm still very happy with the care she receives right now with all her specialists. Once we put the mito diagnosis to rest, we will treat accordingly (either just keep trucking or treat her as a mito kiddo)

And after this appointment, we were suppose to see the surgeon (yesterday). So we drove all that way, down the mountain, 1.5 hours away from home, got to the waiting room and the nurse comes up to me and says. "you are going to hate me for what i'm about to say" and I was freakin out in my head. she said that she forgot to call me to cancel the appointment because the doctor was in an emergency surgery and he had to cancel his clinical. REALLY!?!? she couldn't have called me within the 24 hours that she knew about the surgery and the time of the appointment!?! omg!!! i just wanted to punch a wall~! I was so pissed off! I still am. This whole thing has been dragging out long enough. I was so pissed that I was cussing up a storm to my mom and talking about how I was just going to switch hospitals because of how dumb this whole thing is! It originally took 2 weeks from the time that we knew we needed a surgical consult to the time the first appointment was made because of paperwork and everything. That original appointment was canceled 2 hours before we were suppose to be there (while we were driving out of town even) and moved to the week after. we had that appointment then the doc wanted an additional test to be performed. Two weeks later the test gets done and we had our appointment for yesterday to follow up and now we are having to wait another week for this appointment. I'm so sick of it! I'm tired of this feeding schedule . i want her to feel better and I just want to know if something will help her. She's skinny and i want her to be fat. 

Quinnie's new feeding backpack!