I have been SO busy with the holidays! It's just been nuts, but here's what I have accomplished in the past week or so. I have sewn curtains, made christmas cards (scrapbooking), gone to a birthday party, Q had an EMG, hung out with a fellow Mito Momma and her two kiddos, and bitched, moaned, complained and bitched some more at Mobility Solutions (where we hope to get Q's medical Stroller), pulmonary office and Quinn's oxygen company, as well as Social Security. Wouldn't you believe it... we just have the worst luck. First of all, it's been a few months since we started the whole process with trying to get a medical stroller for Quinn. After about hmmmm 5 phone calls spanned over 3ish months, I finally asked to talk to someone in corporate and they finally sent me to someone's voice mail who called me back and claimed that they never communicated with him. Apparently, he never knew that I had been trying to call. GGGRRRRR!!! So the company they sent her measurements to lost the paper work and he had to resend it, a couple days later, the claimed they didnt' have a script for the medical stroller (when i did indeed give it to them) and THEN, I had to re-fax it. It was just a long process of phone calls, leaving messages, threatening to call every hour till someone finally picked up and etc... HOPEFULLY! that's the end of that crap. I was told that IF everything goes right and insurance approves her stroller, she will get it by the end of Janurary, beginning of February. However, we know how that goes and I'm prepared to fight a battle with this as well.

On to the oxygen thing... wouldn't you know it!? We are still battling this... STILL!!! After the pulse ox study indicating that she needed oxygen and doctor's notes/prescriptions, talking pleading convicing... there's just nothing I can do on my part except to see what the process is to start a lawsuit. It took an entire week of talking between pulmonary and the oxygen company to try and get the new request worked out and I was just told today that they finally sent the prescriptions and records of necessity in to the insurance. If the insurance denies this... AGAIN... I WILL be doing SOMETHING about this. I've got a patient relations advocate helping me with this. I've left multiple messages this week with SSI (because they are the ones who deal with her Medi-Cal and don't ask me HOW long it took me to figure that out and for someone to finally give me that information). Not to mention the Pulse ox issue. I don't understand HOW this is such an issue, honestly.

Q is running dangerously low on oxygen, we are out of cannulas and using baby ones to try and make those stretch. She is left with just half an E tank. And her concentrator needs to be serviced and/or replaced. We are grateful as family has offered to pay out of pocket for her medical supplies for right now. God knows i just can't afford it all right now. We might have to take that route however I hate to resort to that. It's quite apparent that Quinn needs her oxygen. She becomes pale, lethargic, dark circles under her eyes, her tummy starts giving her problems. Eventually, it just wears her down completely where she's just a ball of a mess. I just wish getting what we need for her, when she obviously needs it was not so difficult.

As far as the tube thing is going, we have thankfully started seeing some improvement. And this is all around a great thing! I was sincerely regretting the decision to put her through that J tube surgery. It was rough... very very rough and I hated seeing my baby suffer. but, we seem to have reached a nice steady slope uphill into bliss. There are a few issues, one of those being a low level dehydration, however we are still working out the kinks in her new schedule to help push more fluids into her. she is also not really gaining weight. She actually still looks quite skinny. You can still see every single bone in her body, ribs, pelvic bone, thighs... when she takes her clothes off, she just looks sickly, but I am crossing my fingers that this is just a slow process. She was very sick and she has bounced back very quickly, there's bound to be a few things that are going to take a bit longer to work themselves out.

The ferral bags seemed to have really helped a lot with her distension! We keep her hooked up to that pretty much all day. she continuously vents. We do clamp her for about an hour or two when she takes in food and fluids by mouth, but we are so grateful that she's not in so much pain. Now, I must admit though, today she was slightly more distended and her tummy did hurt her today and yesterday, and she was putting out quite a bit of food through the ferral, however, I can't expect anything more right now. Even with this small bump, it's still 10 times better than what we were dealing with before all this new stuff came along. Besides, she is prone to having bad motility days so mostly good, a little bad... what more could I ask for!? It's a great feeling to not be overly worried about her stomach distension.

The coolest thing about how she is feeling is hearing it from the family! When you are with a child like Quinn day in and day out, it is very hard to pick up on the big changes. All we see is the subtle changes. Mix all the good with some of the bad and you are left with a mom saying over all things seem to be looking pretty good. But then to hear family talk about how she was before the surgery and how she is looking now! It just seems like a small miracle. My auntie was telling me about how she was just a few days before she went into surgery, how dark her circles were (yes while on oxygen), how lethargic she seemed and clumsy. and now, Q is so talkative and outgoing and her eyes are so bright and happy and she is just soaking in all the good. It's wonderful! It makes me feel better about the decision we made for her.

I must say, it is a bit bitter-sweet to have a child that feels well enough to act her age. Q is almost five! she turns five on the 17th of January!!! At almost-five, if it's not what SHE wants and if it's not on HER agenda, well, then, that person who is crossing her is gonna get quite an earful, and what i mean by earful I mean loud, stomping, kicking, screaming, arm-crossing earful. And unfortunately, that person crossing her is usually her mommy. i'm doing my best at trying to find a new way to deal with this and my next step is grounding!!! I think she can grasp the concept of that. Taking toys away is just not cutting it.

 The Above is my Baby Quinn :)

Things haven't exactly been smooth sailing since coming home. At times, I'm on the brink of taking her in to the ER, but other times, I think she is heading in the right direction. All in all, things appear to be going ok. I hear this recovery is a rough one and in my opinion, after all the drama that happened after her surgery with the PICU, she was discharged a little too quickly. She's still not quite as stable on the feet as she was before. Last week was pretty rough as she was still in a significant amount of pain and we were unable to keep her at a rate of 45cc/hr. We have had to decrease her rate to 30 and we end up removing her altogether during extended periods of pain and bloating. We have yet to see any true improvement in her pain and bloating since the surgery, which is a little depressing, however we also are aware that she is still in recovery so it might be a little while longer.

We were also able to order ferral bags for her. Thsi way we can vent her G continuously and feed her through the J. They haven't come in yet so i'm not sure what our system will be like, but i'm sure we will find one that works.

Last night, she leaked her J feed somehow. I have NO idea how because everything seemed to be very intact and even the tape that we use to keep her med port on her extension shut was pretty clean and dry so I didn't think it could have been from that. Not to mention that the puddle she was laying in was almost dry in the morning so it just kinda happened in the middle of the night and kinda stopped by itself. The extension looks pretty clean... even where the Christmas tree is (she usually likes to pop those out too). I thought maybe she just wasn't moving her food through very well, but when she woke up, her belly was really skinny and not at all bloated, so, in all honesty, I have NO idea what happened. 

Today was her first day back at school in 2.5 weeks. She was so happy to be there, but it took ALOT out of her. She looked down right exhausted the whole 2 hours she was there. Her face was incredibly pale, her lips were very dry and cracking and she looked like she was just going to pass out. (I was there the whole time). Teacher said this is the most off-balance she had ever seen her... which is quite surprising to me because I felt like she wasn't doing too bad. She looked really sick. worse than she did yesterday even. So I was a little concerned and when we left, she said her stomach hurt her really bad and shew as just crying and crying (but it was really skinny, no bloating). I had to go to the Medi-Cal office for some paperwork, which is right across the parking lot so we just walked there and she fell asleep in my arms. She typically doesn't do this unless something is really off. When we got home, she was sleeping, but her nose was bleeding. YIKES, things just don't seem right to me today. She also has not peed at all today. I figure that possibly her altered state of consiousness and lack of pee is from possibly the lost feed, she might have been low on sugar so I started her tube feeding right away. And the bleeding nose is possibly from having too much tylenol round the clock for pain and so I called her GI doc to see if we could get a better pain plan for her. Just waiting on a call back now.

We also have YET to get an appointment set for Dr. Boles. I'm getting really ansy. I feel like if we knew for sure what was going wrong with her, we could avoid problems and I could at least feel much better about fighting for her with a firm diagnosis to stand on. Like right now, I won't take her to the ER unless things are so bad she could die. That's how much faith I have lost in any kind of treatment for her. After the last stay at the hospital, everything that has anything to do with needing to go inpatient is just nightmarish. I might be going a bit overboard with all that, but that's how I feel right now. I feel like because of how she looks on the outside, she is automatically put into a "healthy child" category... one who just doesn't need preventative measures, or whose symptoms don't need to be taken seriously. I swear I was telling that doctor that something was wrong with her and he was telling me that she's fine and looks to be healing nicely... adn that VERY SAME DAY, she crashed hard! She could have died had we not been in the hospital! And THEN, he tries to tell me later that night that he thought it was all anxiety related and that there doesn't appear to be anything wrong with her... as she is barely consious. WHAT!?! And then 10 minutes later there's a huge flurry going on in her room about her being acidotic and hypoglycemic, and hypotensive. I hate you doctor, right now, i really do. Had it not been for your negligence, her recovery might not have been so scary. I really hope Quinn taught that resident a lesson... I really do.


Anyway, i've got a lot on my mind so I've been playing world of warcraft a lot, because it takes  my mind off the stuff I don't want to think about and for right now, that's a good thing.

This is how her belly has been looking, but it goes down if I take her off for a few hours.

 Being a Goof Ball