in hospital again.

Ugh. My phone sucks. I tried writing this update about 4 times and if someone calls me, the content gets erased and even if I do save it, it won't paste it back in the content. Ggggrrr! Here's my last attempt.

This is for those who don't know what's been going on, and for those who do, here's the details. Forgive my grammar slaying.

Saturday, my sister and her son came into town from san Diego. Quinn had so Much fun playing with her cousins Matt, Aj and the twins. We usually leave right around the time that Quinn gets her night meds, but we decided to stay a little longer. Everyone was having so much fun. Little did I know the foreboding nature of this little visit.

On Sunday, Quinn woke up exceptionally early, which hasn't really been very abnormal lately, it sucks nevertheless. She usually just needs help going pee and then she sleeps for another hour or two. Well, this time, Quinn didn't want to go back to sleep. I was exhausted and so I just stuck some cartoons on the tube and tried to go back to sleep. Quinn was relentless though. She was irritable and bugging me. I feel bad because i didn't really treat her well this morning. I was frustrated that she wouldn't let me sleep. So, I finally crawled out of bed around 700am. She started complaining of her heart beating too fast, so I checked her blood sugar and it was 127... Perfect. I told Quinn that she was probably just going through her little SVT thing and her heart needed a rest so I had her lay down on the couch. I thought that was good enough and I went to lay down in my bed again to try and get some more sleep. But she came into my room about 20 minutes later and was crying and holding her head. She said that something was really wrong with her head and she really needed me. Ok, kiddo. Now I started to feel sort of bad. I checked her o2 sats and she was doing ok on her oxygen, but her heart rate was almost 150, so I just turned her tank up and told her to lay down. About 30 minutes later, she said her neck was really hurting her in the back and that her head was hurting really badly. By this point, she was crying. I tried to rub her neck, but that was so painful, it caused her to scream. So km like... Alright, I will just check your temp. Het temp was 102.8. It surprised me! Her head didn't feel warm, hut when I felt the rest of her body, she was really burning up. Ok... I definitely just lost the mother of the year award there. You know you have a medically complex kid when she's not feeling.g well and the LAST thing you think to check is her temperature.
Quinn has mito. She's sort of expected to get sick and we deal with A LOT here at home, but when this kid gets a fever, its usually pretty bad. And she declined very rapidly. I kept her home for two hours after I took the first temp, hoping things would calm down some, but she looked really bad and her head and neck pain was intense. When my dad got home later that morning, I informed him that I was taking Quinn to the er. Quinn couldn't even hold up her head, her temp was still 102.8 and she was looking pretty horrid. He helped me get her into the car and we headed in.

She was still feverish when we got there. She looked incredibly sick and dry. Her blood pressure was very low. She was started on fluids and needed boluses for her pressure. They did a CAT scan, chest x ray and spinal tap. Her wbc was extremely high (30,000) it should be 11,000 or less. Her labs were showing that she was well hydrated, but she was so dry she wasn't even crying tears. We spent 10 hours in this er trying to get her transferred. Finally the ambulance came at 1130pm. The doctor at the er said that her wbc was so high, it Qs an indication of her fighting a severe bacterial infection, but everything was clean (chest, urine, cat scan, and the spinal tap had no wbc in it). The doctor still felt that she had meningitis.

So, she had been sleeping like crazy. The ambulance comes in to take her and the medic walks in and is like... So Quinn has mitochondriolitis? I'm sorry, I couldn't help it! I just laughed at him! I asked him if that term made sense and he was like no, but what is it? And I asked him if he knew what mitochondria are and he did, surprisngly. Lol! I said that I didn't even think it was possible to have infected mitochindria, just defective. I am sure I offended him as he was pretty cold to me after that. Woops! I didn't mean to, I just found it comical. I followed behind the ambulance. About 45mins outside the children's hospital, the ambulance pulls over... I'm freaking out! The emt gets out of the driver seat, runs toward the back and the medic is kneeling over my kid, waving me in. Wow! I was so scared! I go into the back of the ambulance and she is crying and writhing in pain. The emt says that Quinn is in a lot of pain and they needed to give her morphine, but her iv was completely blown. Whew! What a relief! Just a new iv... Thank god! So I helped calm her down while she got her iv and then we noticed that her lower stomach was extremely distended. This was a new symptom since we had left the er. Medic was worried so he wanted to book it to loma Linda, so we got back on the road.

Quinn's fever had been broken for a few hours after we got to loma Linda. She was still visibly sick, but she was able to wake up enough to answer questions and was coherent. So, I tell about 5 people what was going on. and they thought she had meningitis too. They said no matter what, her wbc is high enough to admit her on antibiotics. She was really sickly looking too, though.

So, we got admitted to loma Linda. She was started on more iv fluids and antibiotics. She had an abdominal series Xray which was surprisingly fantastic! First x rays I've ever seen that looked so awesome. She just was full of poo, but who cares about that! Lol.

Monday was pretty rough on her. She blew another iv. She slept the whole day. She looked so yucky. She had a rash around her eyes, she was just sickly looking.

Tuesday, she was able to start some clear liquids. I woke up to her eating eggs and toast. I started raising hell! Who the hell ordered her a diet for age!? Nobody really knows what happened. Her chart showed her on a liquid diet. It was a mistake. But she paid for it. Within an hour she was in severe pain, shaking, headache. Her tummy was feeling horrible. Nothing helped to calm her down. Eventually we had to drugged to sleep. We had to put her g on suction because she had chunks of bread on there clogging up her drain. It was just horrible. She was right back to looking like doo doo. Not only that, but in the evening, she still had not peed did about 10 hours. I had been asking her all day if she felt like she needed to pee and she kept saying no. So they ordered a bladder scan, which showed that she had about 600ml of fluid in her bladder. We threatened to cath her and made her sit on the toilet and she finally peed 300ml out. Then, the doctor comes in and tells me that if she's not on a set schedule, kids will hold their pee for days. I wanted to slap him. That is so not true! I don't know what kind of kid would do that. If anything, they will hold it too long and then pee their pants. anyway, she at least peed. At the end of the night, her head started hurting her again and she started vomiting. Tylenol helps.

Today, things have been pretty good. She still is having headaches. She hasn't pooped in almost a whole week though.
They started her on a very high calorie formula because she has lost 4 lbs. She. Blew 4 iv since we have been here and right before they started procedure for a picc line, we got news that her spinal tap did not grow any cultures. So they just discontinued her antibiotics! Yahoo. The only thing is, we have no idea where her infection came from. They haven't even taken blood to ensure that she has cleared the infection... Before we get discharged ok going to make sure that her wbc is back to normal. She has been getting tylenol a round the clock for her headaches, which could cover up fevers. So I just want to be sure before we leave that she is no longer infected.I think that's a reasonable request considering how sick she got. She definitely looks like her normal sled today though. I'm concerned that she hasn't pooped either, but at the same time, we deal with that crap all the time.

So, all in all, it looks like we will be going home soon. What an ordeal!

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Appointments!

On Wednesday, Quinn had her 6 month follow-up with her neurologist. Quinn's original neurologist left the office at the end of 2010 and so at the beginning of the year, she started seeing another one. We only had one visit with him and he was suppose to be fairly educated in mitochondrial diseases. I had no qualms with him at our first appointment, i just had no strong opinion of like or dislike for him, which is neither good nor bad. So we were suppose to see him on Wednesday. i'm a mom full of many appointments and there's a lot that has gone on in the past few months. Apparently, i wrote the appointment time down wrong. It was suppose to be at 1pm and I arrived at about 140pm thinking that the appointment was at 2. I was wrong! So after waiting in the office for 45 minutes to see if he would still see us, i was informed that he wouldn't! And that we had to reschedule. I couldn't believe this!!! I drove 1.5 hours down the hill to go to this appointment. Oh, i started ranting at the poor receptionists and nurses. they were all so nice and very understanding, but it's the doctor who makes the decision, not them. It's not even like i really needed much of his time! we have to see a neurologist every 6 months for insurance purposes, plus, all i really needed was to discuss a wean from one of her three seizure medications. Still, he refused to see us. So, I talked to the nurse and I told her that I wouldn't be coming back to see this doctor and asked her if there were any doctors in the office that were willing to see us at such a short notice. By this point, I had fired this doctor and was going to have to start doctor shopping, might as well start at the same office and cross my fingers, hoping I got lucky. WE DID!!! Another neuro decided that he would see us. I must say, it was probably meant to happen this way because I couldn't be any happier with the new neurologist. He is definitely a better fit for us. He was more informative, more helpful and he even read over her last clinical note before seeing us (which is more than the last one did for us). He did a thorough exam on her and noted, yet again, her right sided weakness, which has probably gotten a little worse as time goes on. He said she's much slower on the right side as well and she has a slightly droopy eye on the right side. I told him that her previous neurologist was only putting in her clinical notes that she had "probable" mitochondrial disease, which I don't entirely dispute since we don't have a definitive defective gene, however putting "probable" in the diagnosis has caused us to lose some coverage that we once had (for wheelchair, braces, therapies and some medications). So, he is clearing it up for us. She has a lot of Cerebral Palsy characteristics, which is likely not at all CP, but is definitely related to her mitochondrial disease. He gave her a diagnosis of CP because insurance will pick up coverage for her chair and braces for that. And he gave her a diagnosis for "disorders of the mitochondrial metabolism". Thanks doc! this should help us out a lot! Otherwise, this was really our first appointment with him so he couldn't really comment on any possible changes in her. He also gave us the ok to wean her off one of her seizure medications!!! yahoo!!! As far as we can tell, Quinn has been seizure free since November. I am so happy to be able to take her off another medication. Oh, and we also discussed a muscle biopsy for Quinn. He supports the idea for us to have a muscle biopsy on her because then insurance can't dispute her diagnosis ever again. We will discuss this with her mitochondiral doctor next month because it is quite possible that he will want to have it done at his hospital.

Quinn also saw her GI doctor. This appointment was basically just an update, but we also wanted him to be able to order some new supplies for Quinn. Quinn needs to have her extensions secured very well at school. Unfortunately, the only dressings she has to secure the extension is paper tape and this is ripping up her stomach! Even the paper tape itself causes cuts to appear on her tummy, ripping the tape off every day is giving her a rash and etc... So we wanted a device that can stay on her skin for at least a week but had  a flap that could be opened and closed. Someone mentioned to me the GripLok device and so that's what we asked for the GI doctor to order. Plus, we need urine bags for her drain at school, some tegaderm and some additional tape and gauzes to be sent in addition to her monthly order of supplies. I do hope the insurance company is willing to fund these as she truly needs them for school. Quinn has also lost 3 pounds. The 3 pounds weight loss in less than a month is truly a bad sign. You can sort of tell that she has lost a bit of weight too. I am hoping that the weight loss is just from draining her... so in other words, she no longer has stagnant fluid just sitting in her body, therefore her current weight is probably the most accurate reflection of what she has always been. Quinn has had a yeast rash on her butt for the past 2 months. Nystatin does nothing for it other than to keep it from getting really nasty. It's still there however and so he ordered some Diflucan (an anti-fungal) to treat her yeast as she smells completely rotten under there. We have also been having a hard time getting mirilax into her. Quinn is tolerating 40ml/hr in her J tube. This is her only source of nutrition. She has a caloric increase of 30kcal Vivonex running into her system 24 hours a day. I tried mixing her mirilax into her formula, but it completely separates the formula from the fluids! No bueno! So then I tried mixing just hte mirilax and running it into her J tube at a faster rate, but this is causing her to miss out on some much needed calories, which is also not good right now. We have previously tried Generlac for Quinn, but I noticed some blood sugar instabilities when she was on that. At this point, we don't really have a choice. So we are going to add Generlac (Lactulose) into her medication regimen, up to 50 ml a day along with her Senna to hopefully make up for the lack of mirilax. However, he is also ordering some boost fruit juice things that have calories in it so we can run mirilax mixed with that so she doesn't lose out on so many calories. We also no longer have to do the enemas as they simply don't work. Her colon contracts when it contracts and the fact that she holds the enemas in for days at a time (as in, she doesn't even push the flush out) can actually cause more harm than good. Simply put, Quinn will poop when she poops and if she doesn't poop for 2-3 weeks, we go inpatient. He took some blood to check on her nutritional status and I should get those results today. We go back in to see him in 3 months.

Will someone please tell Zevix to fix these poorly made bags!!!?

School

Quinn is an AMAZING child! She has so much to offer the world! She has had such a hard life. Some days I am in awe of her strength and her courageous outlook on life! She never gives up! she never feels sorry for herself! she never lets anything bring her down! she is always smiling, always happy, always making other people feel as if they are worth the world to her! Quinn's personality could move mountains. I know this about my child, but I am also her mother. I'm so bias! But to be able to hear from the mouths of those around her that she is the SAME way when I'm not around to protect her, to advocate for her, to be her voice... makes me feel so very proud.

I expressed in Quinn's IEP meeting at the start of school how I did not want her disabilities to affect her academically. About how I knew that she has the ability to learn and grow like any other child, but I didn't want her to be treated any differently academically just because outwardly, she looks like she might need some help. She is allowed to be in a mainstream classroom with an aide, who would help her move around and keep her focused on her work. I knew that there was a large possibility that she could have some learning disabilities, but I did not express this in the meeting because i wanted them to be able to identify them if they were there, not to be looking for them just because I mentioned I was worried about it.

When Quinn started Kindergarten, I'd be lying if I said that I wasn't worried about her. Worried in so many ways. Quinn goes to school in a wheelchair stroller. She is connected to her feeding tube and a stomach drain the entire time that she is in the classroom. She is also connected to her oxygen for most of the time. She has 3 tubes hanging off her body. Her formula stinks... horribly. She has to wear pull ups due to accidents and she is obviously slower than any of the other children. She requires regular pulse ox checks and blood glucose checks. she sometimes needs to leave early and spend time in the nurse's office. Sometimes, her body is too tired to participate in recess and PE. I do my very best to keep her looking and smelling like a normal kid. I have her wear long shirts to cover up her pull up and I spray her down with smelly good body spray and lather her in smelly good lotion every morning. As well as put a dryer sheet in her backpack to mask the smell some. I worried about how she would do academically. I worried that she would have a hard time making friends or that she would feel like an outcast. I worried that she would feel different.

Quinn has been having some trouble in school with breathing and has needed to sit out a lot for recess because of this. Her oxygen gets too low. Her aide is trained to recognize Quinn's symptoms and to read the pulse oximeter accurately. Quinn's sats have sometimes been sitting in the 70s and the aide said that when her sats are low, it is very evident in her demeanor, energy, and on her face. she gets very pale and she gets really dark circles under her eyes and her breathing changes (symptoms reported by her aide). This worries me a little that school is taking a lot out of her, but turning the tank up enough to bring her saturations back into normal range seems to help her. Thankfully, she does have oxygen to help her during these times. She is also pretty exhausted when she gets home. Draining her stomach does work for her very well, but she does still come home complaining of some stomach pain and she does still get distended easily. She is exhausted too when she gets home, but we really expected this.

So, when Quinn's teacher called me this evening, I was expecting the worst. I was expecting to hear that she was struggling to keep up with the children, that she was feeling different, that she was not talkative and that she was not doing well academically. I was expecting for the teacher to express concerns about how Quinn is fitting into the mainstream classroom. Much to my surprise, this conversation went a completely different way! She said that Quinn has been one of the strongest academically. She is recognizing her ABC's and 123's. She is able to count the numbers very well. She is retaining information! Her aide even said that she thinks the reason that Quinn is somewhat slow with her work is because she is bored. She said Quinn already knows what is being taught and so she feels that Quinn is bored, which is why i see her come home with incomplete work, but a bunch of doodles all over the paper. ( this to me is unacceptable anyway and Q knows it, but still makes me proud! ) She also said that she fits in very well with the children! She makes new friends every day! She is involved in a "girl's clubhouse". Apparently, these girls made friends and they all sit under the playground thing and hang out during recess. They are very good about helping Quinn when running around. Quinn is definitely slower than the others. The other day, they were all holding hands and trotting in a big line. Well, they were moving too fast for Quinn and Quinn fell down really hard and popped her feeding bag open and had to go home from school early. Apparently, the entire classroom was very worried about her because she never came back after she went to the nurse's office. Sometimes, the children inquire about her attachments, but they never make fun of her for it. They are just genuinely curious and most of them know that Quinn just needs extra things to help her be as healthy as they all are. So today, I lay my worries to rest.

I am so proud of my baby girl! She is truly an amazing human being! She has a heart of gold, and I do hope she keeps it forever. She has a voice that she knows how to use. She has the strength of 10,000 men. She has a powerful presence and she will always persevere. I love my kid and I am so proud to be her mommy!