March of Dimes

SHARE HOME > SHARE YOUR STORY > ALL SHORT STORIES > BLOGS

MY STRENGTH

BearHugz

May 2013

Category: Home

Sun

Mon

Tue

Wed

Thu

Fri

Sat

NOVEMBER 2010 AND NOW.

Jun 27, 2011 10:49am (EST)

... and as soon as she woke up from recovery, i started to regret the decision. A mother, faced with a decision to either do surgery on their only child or continue to let her suffer. In many ways, it seemed like an easy decision. Her stomach was blowing up like a balloon. Didn't matter how slow the rate was being pumped into her stomach, the volume was simply too much. It compressed on her diaphragm, causing breathing difficulties, making her completely dependent on oxygen. Not to mention, the pain it caused. Unfortunately, the GJ tube didn't work. Her anatomy is strange. It caused the placements of the GJ tube to take much longer than it should have and the tube never stayed down for longer than a week. After multiple failed attempts to keep the tube in place, followed by long, and painful and emergent trips to the ER along with extended hospital stays due to complete stomach shut downs, we had to pull it. It was worthless if it didn't stay in. So, the surgeon and GI doc felt that she was a great candidate for the Roux en Y... a surgically placed separate J tube. There were hopes for the new tube. That things could be easier for us, that we could reduce her pain. That her stomach would go down some and she could have more time off the oxygen. After months of debate and weighing out the pros and cons, my family and I felt that we would make the right decision by allowing her to go through with this surgery.

...And there we were, in November of 2010, sitting at her bedside in the recovery room... again. A place we have been multiple times, yet somehow, this time felt strange. Watching her agony sent immediate stinging thoughts of regret throughout my whole body. My heart physically hurt, knowing that she was in so much pain. All i wanted to do was to take her place. I wanted to make the hurting stop, i wanted to hold her, but i couldn't even do that.

Then she started to spasm. At first they were little short jerks every few minutes, then she she had a bigger, longer spasm and her body started to turn grey. The nurse told us, that due to her epilepsy and how major of an operation she had, we should expect more seizures throughout the night. Not quite the news we wanted to hear.

My mighty Quinn. she was fighting hard. The pain was unbearable. she didn't even want to cough. Every movement caused her to guard the stomach. Visitors came and went for two days, making her smile, blowing bubbles, bringing her gifts. 4 days was how long we were told to expect in the hospital, but I knew my child wasn't recovering right. I had a gut feeling, one that i can't even begin to explain. Even though her vitals were ok, she LOOKED sick. The nurses tried to page the resident multiple times, but he wasn't listening. He felt that we were being paranoid, and that this is just Quinn's way of recovering. He said that they did these surgeries all the time and that she was doing fine. but she wasn't doing fine because inside her body, there was a war, and the evil side was winning.

The spasms continued, and the resident continued to try and push gtube meds, but she wasn't absorbing them. She cried out in such extreme pain and when i let the pressure out of her stomach, she poured loads of dark, thick green bile out her G tube. The bile wasn't stopping, then dark blood started to come out her J tube. The resident said that no, it wasn't normal, but he still felt that she didn't need labs drawn or IV seizure medications to stop the spasms. Just that this stuff was normal for HER. But I knew it was not normal.

2 nights after her surgery, Quinn started screaming about spiders crawling all over her legs. She was going on 36 hours of no sleep, even with loads of pain medications pumping into her body continuously. She was scared and my little 4 year old was hallucinating. As if it wasn't enough to warrant further investigation, she started to spike a very minor fever of 100.0. Still, the resident felt that she was fine and the fever was from the anesthesia.

On our 3rd day, Quinn needed her sheets changed and the nurse said that she is at risk for pneumonia due to her not moving at all in bed. It was hard for her and took 3 people to move her off the bed and onto the chair to change her sheets. my kid was in bad shape, she looked very sick and worn out. She was still in such a severe amount of pain. We sat her up for 20 minutes, talked about bubbles and what we were going to do when she got out of there. She laughed a little. We let her hold her balloon and tried to keep her comfortable. Nothing could have prepared us for what happened next...

Suddenly, Quinn clutched her chest and started to complain of her chest hurting her really bad. She said it was her heart. She was in agony. I ran out to get the nurse, who assessed the situation, then her alarm started beeping uncontrollably. My auntie turned and looked at the monitor and said, "Oh my God, does that say 190!?" Quinn's heart was beating too fast. We moved her onto the bed, trying to get her comfortable, but her heart rate kept climbing. the nurse bumped up the oxygen to full blast, but she was still clutching her chest, the nurse ripped off her gown to see that Quinn's chest was retracting horribly. She ran out to call the team leader, who then pushed the "oh shit' button on the wall and called a code. My family was pushed out the room as it quickly filled with at least a dozen nurses and doctors and a crash cart, Quinn was hooked up to the paddles and the nurse turned and looked at the PICU doctor and said, "Are we going to take her, because we need to do it NOW!". Quinn's chest was collapsing with every breath she took. Her skin sank so far in between each rib. She was in severe respiratory distress. She was placed on the bed and was Very quickly whisked off into the PICU. I don't know what i did when all this was happening. I went into a state where I can remember such vivid things, but everything else is a cloud.... a blur... voices turn into echoes. i'm sure I'm useless as I know they were asking me questions about her history and all i could tell them was.... no... i don't know... what's wrong with her!? there's so much i should have said, so much i should have done, but i didn't have it all together. I didn't expect this and when it happened, i just didn't know what to do.

Quinn was given a lot of drugs to calm her down and help her breathe better. The resident, who insisted nothing was wrong saw us in the hallway and told me that it's just anxiety and that there's nothing really wrong with her, she just overworked herself and that her EKG was totally normal. He never apologized. And he was wrong. So many times he was wrong.

Quinn was a very sick little girl. Her blood pressure was incredibly low, her heart rate was incredibly high, she was having a terrible time breathing. she became unresponsive to touch and sound. Her blood sugar was very low and she was extremely dehydrated, despite having been on IV fluids. She had a flurry of doctors and nurses working on her for hours in the PICU to try and get her stable. And we finally realized that she was acidotic and they were strongly suspecting that she was septic. She was hooked up to so many lines, she needed meds to keep her blood pressures up, meds to keep her infection at bay, meds to keep stop her seizures, meds to help her breathe, meds to keep her sugars up. It was a horrible nightmare.

The next day, Quinn started to make a miraculous recovery. she was weak, but she was awake and able to communicate. When talking with the people on staff, all of them said she was in very bad shape when she first came in. Her breathing was horrible and if her blood pressure wasn't so low, they would have intubated her, but she was breathing still, albeit, very horribly, on high flow oxyen, she was able to keep ehr sats up and intubating her with such low blood pressure was too risky. Thankfully though, she started to breathe better and by the second day in the PICU, everything was reversed aside from her blood pressure. Her pressures were still low and requiring meds to keep them up, but otherwise, she was doing better.

On the 3rd day in the PICU, she was almost able to sit up, but her blood pressures were continuing to stay low. The docs said that she was doing ok with low blood pressure and just to watch it, but that it seemed like lowering the perameters for her was ok. She was moved to the general ward and thankfully, the nightmare was finally over. she started to recover. That was possibly the single most scariest thing that's ever happened. Something like this happened when she was a baby and was taken to the NICU, but nothing to this extent.

Since November of 2010, Quinn has officially been diagnosed with mitochondrial disease. I am happy to finally have a diagnosis, but given how difficult her journey has been so far, I am very scared for her future. Quinn does still have her separate J tube, but unfortunately, her recovery did not go as planned in the long run. Feeds were still very painful and accumulating in her small bowel causing a lot of pressure and pain. She now has a J tube that threads 8 inches further into her intestines, and that helps. She still has periods of complete gut shut downs, requiring long hospital stays. and we have learned that at this point in time, there is no alternative, except TPN and that's simply not an alternative. It takes a lot of work to keep her plumbing going as well as possible. She needs a lot of daily laxatives, daily pain meds and she drains her stomach during the night to get rid of the excess bile and reverse motility. She was on a PICC line for hydration for 2 months, but we are making it work right now with some special formula and we add electrolytes, sugar and salts with protein to her tube feeds. I have to check her urine daily to make sure she's not spilling ketones. I have to chekc her blood sugar to make sure she isn't getting low. And she does still need her oxygen every once in a while. But this is the disease. It wreaks havok on these children and sadly, there isn't a cure.

Finally though, after all these years. I suspected, i KNEW... we finaly have an answer to why my full term little girl has struggled all her life with so many health problems.

Nothing is taken for granted in my house. Every day is precious. Every moment is one to be cherished and you can never take too many pictures.

Posted by BearHugz | Comments: (6) | Permalink

RANDOM REFLECTIONS

Sep 23, 2010 09:07am (EST)

So, i have been a member of share for a long time, actually. I think Q was about 7-9 months old when I first joined. She is 4.5 years old now. Wow, kinda crazy to think that I would ever even be a part of an online community. I joined because I wanted answers. I knew that it was NOT normal for a full term infant to have gone to the NICU a month AFTER birth. Heck, i didn't even know what a NICU WAS until we were thrown into this alien world. My pregnancy was PERFECT! I was the picture of health! I had this cute little basketball belly. I was so happy to be having my little girl. I knew our journey would be hard, as I knew I was going to be a single mom. But I was preparing. I took birthing classes, I was going to breastfeed because I just knew that was the best thing for her. I didn't even want to have an epidural! I ate so healthy, i took every step to ensure that this child would be as healthy as possible. I wanted the best for her, for our life together and i was going to do what it took to give her the world! Even though I was to be doing this alone, i knew that she was going to have love enough to fill up an entire planet. She wouldn't be missing anything. And when she was born, I stopped living my life for myself and I started living it for her. There was nothing more beautiful. There was nothing more important.

when I took my full term child home from the hospital, everything about her was so inspiring. It was amazing that this tiny child grew inside of my body for so long, I felt so incredibly lucky that I was chosen to be her mommy. But NOTHING could have prepared me for the road that we now walk. I knew children got sick, but I never thought in my wildest dreams that it would be MY child. No, MY child wasn't going to be the child that threw up like the exorcist. My child wasn't going to be the one that couldn't even cry, that turned blue and scared the living crap out of me! My child wasn't going to be the sickest kid on the pediatric ward. She wasn't going to be a child that was transported to the Neonatal Intensive Care Unit. I wasn't going to be the mom that was unable to breastfeed. I wasn't going to be THAT mom, THAT mom that sat by her bedside for hours and hours touching her tiny soft feet because she was too sick to even hold. That's not my dream, that's not the life we were suppose to live, that wasn't the baby that was growing so perfectly inside my stomach. And yet, it was her. There she was. My sick little girl... and here she is still, struggling. Sometimes, i just want to shrink her back into a little tiny embryo and re-grow her. Because she was perfect inside my tummy. She should have still been in there.

I later found share. I was unsure if her heart was actually healthy and I really just wanted to connect to someone who might have been through our journey. Lo and Behold, I found SO MANY! So many people who have been on my journey, and then so much more. I was amazed at the ability of children to survive far worse trauma than what we were exposed to.

All the feelings and emotions that I'm feeling have been hitting me very hard right now. I held both my little nephews when they were babies, changed their diapers, watched them, talked with my sisters. Perhaps it is because they are little boys and not girls that I didn't feel so robbed of the way normal should be. My sister gave birth to her twins four months ago. They are incredible children, healthy little girls! I love them with all my heart! Sometimes, I hold them both in my arms and I sit in a nice warm chair, quietly holding them, rocking them and they look at me and I feel so at peace. I love my little nieces so much. but I also feel bitter, but not towards them by any means. I feel so bitter because at their age, my child was in too much pain to cuddle in my arms. She couldn't settle enough for me to rock her to sleep. I thought I was always doing something wrong. She screamed for hours and hours. She was hooked up to an apnea monitor and that thing would scream for hours and hours too. It was a constant stress fest when I tried to spend a small, tender moment with my child. perhaps that is why I feel so happy and peaceful when I hold my nieces. I just wish I could have had that with Quinn. As my nephews grow older, I am always reminded of how normal things should have been. How not normal our life is. And sometimes I feel sorry for Quinn that she has to endure so much. I often wonder what I did to fail her. If there was something else i could have done to keep her from harm. I go back to my pregnancy with her and the thoughts that flowed through my brain back then. How stupid was I to not even consider the possibility that I would give birth to a chronically sick child. All the books that I read, all the preparation, everything was worthless. I find myself reading more medical journals than parenting magazines. Desperately searching for new treatments for seizures and bowel dysmotility than I do for fevers and cough. Instead of searching for a new dance school, or enrolling her in gym class, i'm searching for a new doctors and specialists who can diagnose and treat her. I never knew that by the time my daughter was four, we would be hauling around feeding tubes and oxygen tanks, this was not the life I wanted, but it is the life we have. If I were to turn back time, I would not have changed a SINGLE thing if it meant Quinn could not be here. I'd do it all over again, because I love her, because I live my life for her, and that's all I'll ever do.

I do tend to disappear for long periods of time, but I always come back to this place. This is like my place of comfort. My place for ME! Not even necessarily for my daughter, a place where I can release the stresses of where this crazy messed up life has taken me. I allow these strange people into my rock bottom. I take this blog to a place that I don't even talk with to my family. Partly because I know most of the people reading this understand, but also because I HATE to sound like I don't have it all together. I DO have it all together. But inside, I just want it all to unravel and sometimes, it does. that's why I always make my way here. Because when I am at that point where everything is unraveling, i know i can come here and get these terrible emotions out of my head and I can start rolling it back up into a nice neat ribbon, a nice neat green ribbon.

The Camera 027

quinn5months

The Camera 051

Posted by BearHugz | Comments: (3) | Permalink

RANDOM THOUGHTS

Sep 18, 2010 05:44pm (EST)

I have been so down lately. and i'm not usually down. Quinn started having a cluster of seizures and it was really scaring me. She got put back on o2 24/7 and they added a new seizure medication and she is doing much better. she a lot more tired than she used to be and little more unsteady on her feet, but she is almost back to where she was before all this happened. We are also facing a tough decision on what surgery to go with that will help her stomach. either a pyloroplasty or a roux-en-y direct J-tube. both these surgeries require a hospital stay and both can cause problems with her stomach. We will know more about what our best option is when she gets her UGI, hopefully next week.

She starts preschool soon too. Finally.

All this stuff going on with her just leaves me so emotional and withdrawn. Sometimes, i dont even want to find the strength to wake up and give her medications. sometimes I just hate the medications so much i want to throw it all in the trash and let her be a normal child. I just wish there was something we could do to fix her, all of her, once and for all. But there is nothing. We don't even have anything to go off of. I think i know what disease she has, but we just don't really know so we have nothing to go off of. We just treat the symptoms as they come up and hope she gets better.

Sometimes, it's so hard for me to believe that a child as beautiful and mentally normal as her could have so much wrong on the inside. I have a really hard time seeing her struggle.

When I had to explain a little bit of her history to her school teacher during our pre-enrollment meeting, I almost broke down and started crying!

I have my family that i can talk to about all this stuff, but it's just not enough. I hate to see the downward spiral she has taken this year and I just want it all to stop. She was SO healthy in 2009. I hate 2010. It is so hard to believe that it's been 4.5 years and we are still trudging along, adding new meds, therapies and tubes. They told me that she was going to be fine and grow out of all her issues. they told me this when i took her home from the NICU. they told me this when they placed her g-tube, that she just needed it for a little while. They told me that she would probably grow out of her seizures. They told me that she seemed so normal and healthy that she was going to be fine. and now they tell me that she is suffering, suffering from something neuro-degenerative. something that we can't find.

blackberry 002

The Camera 036

Posted by BearHugz | Comments: (2) | Permalink

JUST ME

Sep 12, 2010 07:39pm (EST)

I hate whatever disease is wreaking havoc on her body. I hate her stomach, I hate her brain, and I hate that I can't help her. I hate the seizures, I hate the medicines, I hate the tubes, I hate the surgeries, I hate everything about this unknown disease. I hate it all and i want it to stop torturing her.

I love Quinn's laughter, I love her desire, I love that she learns, I love her tenacity, I love her undying spirit, I love that she is happy, I love how she makes me happy, I love her zest for life. I want her to grow up and be whatever she wants to be. And i want to believe that she will.

http://www.onetruemedia.com/shared?p=a821b571341c7bef706051&skin_id=701&utm_source=otm&utm_medium=text_url

Posted by BearHugz | Comments: (4) | Permalink

WEAK

Mar 10, 2010 07:00pm (EST)

As much as people look at me and think that through all that I have been through in my life, not just with Quinn, but the secrets of my whole life, people think i'm strong. People think I can get through anything and walk away with nothing more than a scratch. People couldn't be more wrong. Sometimes i wonder if I protect myself too much to let people in, but it always seems that when i let someone in, I get burned.

My dad was talking to me yesterday and asking me about everything. He said that I have been more snappy and not as happy as i used to be. Like things are getting to me more. I used to be able to feel the pain of life, but go on with a smile and get through it all, but lately, life is holding me down and dragging me under. The more I continue, the harder it gets. he says that he thinks it's Quinn's issues that are taking a toll on me, though that probably is a big portion of what is going on, i can't be certain that it's the only thing. I feel like EVERYTHING is going wrong, but that's not true.

I have to go to school with Quinn and basically be her nurse, i don't know why, but i just don't want to do it. I don't even want to get out of the house. I have to force myself to do the laundry and clean the house. Quinn's medication schedule is totally off because I can't seem to drag myself out of bed to give her her 3 o'clock meds! It's like I think to myself that she doesn't need them! so my dad started giving them to her. I HATE the beeping sound of her feeding tube waking me up at all hours of the night!!! it's driving me insane! I just wanna turn it off and never turn it back on. When Quinn wakes me up in the morning, i just wanna go back to sleep. And when she goes to bed, I just wanna stay up and basically do nothing!

this is a side of me i've never seen. I miss last year, when everything was right and nothing was wrong.

-Sarah

Posted by BearHugz | Comments: (3) | Permalink

PULMONARY APPOINTMENT

Mar 08, 2010 10:27pm (EST)

Welp, Quinn had a visit with the pulmonary doctor today. we haven't seen him since September, so we had a lot to catch up on. Quinn is really not the same as she was before, she is paler, her tone is lower and she seems much more exhausted. this was noted by him so we all know that this issue is definitely an issue, unfortunately.

Quinn's oxygen sats were great! she was 99% on 3/4 liter of oxygen. I showed him Quinn's journal that I've been writing to keep track of all her oxygen saturations and he seemed to be really pleased. With my terrible memory, the reference is definitely an excellent thing. I recommend keeping a daily journal for all kids with special needs because every day is a different day and there's so much to try and remember.

So, if you read back through my entries since January, you will see all that I had to catch him up on and the end result is...

Quinn is to remain on her oxygen, 24/7 and to increase it from 1/2 a liter to keep her saturations above 92%. We are also switching oxygen companies because we are getting Quinn a continuous nighttime pulse ox!!! Not the dumb spot checker! so taht way we can monitor her at night!!! woo hoo!!! it's been years and this is what i've been fighting for! But now she should qualify for it!

I asked him what his take is on her issues with the oxygen saturations. And he said that from a lung standpoint, she is good. He doesn't think there is any anatomical reasons for why she looses oxygen saturations, however with her having a possible mitochondrial/neurodegenerative disease, that would definitely give reason as to why she is not able to keep her sats up. He believes that the energy thing probably contributes to it and that she is just unable to take in enough air when she breathes. So, because Quinn does not do well when her sats are low such as : Seizures, illness and fatigue, which contributes to her overall health, he feels that keeping her on the oxygen 24/7 is without doubt the best thing for her right now. We will discuss in 6 months if she can be weaned or if she does have MNGIE, what the best treatment option is from here on out as far as that goes. But for right now, she is doing well with what we are doing... well... as well as can be expected. I mean for goodness sake, we have a hospital at home, practically.

I love her eyes.

006

Posted by BearHugz | Comments: (2) | Permalink

QUINN'S GI APPOINTMENT.

Mar 05, 2010 02:19am (EST)

Well, i'll have to tell you about the zoo later because I still don't have the pics.

Quinn had an appointment with her GI doctor today to talk about her stomach problems. All in all, it was a good appointment, but i'm frustrated because there really is nothing much else to do for her at this point. Our goal is to keep quinn's stomach working for as long as we can get it to work. And for right now, this means that she is on strictly tube feedings and nothing by mouth. Quinn is still an aspiration risk too due to her pneumonia from january and also because of her increasingly difficult time swallowing. (before, she only had to tilt her head back with solids, now it's liquids. she puts her nose in the air just to swallow and it truly does look difficult for her.)

My mom was with me, thank goodness! it's so frickin hard to take Quinn and all her bags and connections with me

but also it makes a difference to have someone else there to basically back me up. I showed him her journal that i have been keeping of her days when she is having issues. And we showed him the pictures of her stomach and he took a look at those and said that it is definitely a distended stomach. But since she is gaining weight, thankfully it's not a malabsorption issue, it's strictly Delayed Gastric Emptying, so bascially, food is having a very difficult time moving into her intestines. In a normal person, food can sit in our stomach for hours and then move into the intestines, in Quinn, he suspects that it is sitting there for days. He explained how he is having a very hard time finding a pharmacy to supply Erithromycin and that's why we haven't gotten our script yet, but the hospital (which is over an hour away) does supply it, so we are going to have to go there. I really don't care at this point. I just want something that is going to help her. We did also talk about a gj-tube. He said that if the erithromycin fails, she will likely need a gj-tube.

And then, me and my mommy self wanted answers. Why is she like this? how come she was able to digest foods last year and this year, she can't? Why is she having seizures? why does she need the oxygen now? And he told me that there is definitely something neuro-degenerative going on with Quinn. Unfortunately, we don't have her diagnosis yet, but Hopefully we will with the testing for MNGIE. He also told me that we might do a liver and/or muscle biopsy to try and diagnose her. He feels strongly now that we are dealing with MITO as her new compilation of issues is very consistent with that diagnosis. (THANK YOU! I'VE BEEN SCREAMING IT FOR YEARS!!!) For right now, we can't do much other than to wait on the testing. He wants her in speech therapy for her swallow function and he ordered a Modified Barium Swallow Study over a month ago for her, but again, we are hitting a road block with insurance. He told me that he has worked in 3 different states, one being new york and he said that this state's insurance is the WORST.

I like him, he's very personable and he genuinely cares for Quinn. He said that me keeping a journal like i'm doing is absolutely the best thing to do and to continue to do it. I also have been keeping pictures of everything! everything weird! lol! And video of weird things too if i can.

The next couple weeks are going to be jam packed still! Quinn's Pulmonary appointment is on Monday, then she has her Eye doctor appointment on Thursday, then on Tuesday the following week, Quinn has an appointment with Neuro (yes, it was moved up) I'm hoping to get neuro to try and get us a medical stroller for days like the Zoo!

Here's a couple pics i showed to the doc today.

and this is my sweet girl today! I love her!

Posted by BearHugz | Comments: (3) | Permalink

EXHAUSTED!

Mar 03, 2010 09:10am (EST)

Today, I woke up at 6am, packed up the car and was out the door by 7am, picked up my friend and her kiddo and headed out to San Diego. We got to the Children's Hospital at 11am, got quinn's Blood drawn at 1130am and arrived at the San Diego Zoo at 1215pm. AND the labtech who saw us two weeks ago told me that Quinn doesn't look well. We finally made it home by 1045pm. I'll talk more about the zoo next post since i'll be posting some pics, i just need to get a few things off my chest!!!

It's one of the most difficult things to take a toddler on oxygen, a feeding tube and who is very unstable on her feet to the zoo without a medical stroller!!! I seriously just wanted to shoot myself in the head. The comparison between the two girls was so vivid. Brooke is a month younger than Quinn. She is bigger, stronger and definitely more lively. It's not that Quinn is just a quiet girl, Quinn really isn't looking well. She is weaker than she was last year, quieter and definitely lethargic. My friend commented on how heartbreaking it is to see Quinn go from how she was last year to this. She said that even her eyes are tired. You can see that she isn't well from her eyes. it's not that Quinn is infection sick, she is just getting worse from her old baseline. I basically got even more confirmation today that I'm not insane because I let Quinn eat just a little bit of french fries because i felt terrible eating in front of her and Well, she got to see the stomach problems immediately and basically all day today.

I find myself snapping at people I don't usually snap at and being selfish when i typically am not a selfish person. i just don't feel like helping people anymore. i'm not saying that today i was like that. I'm just so frustrated with life right now i wish I could quit. But I can't. Life goes on.

Last week, the lady who works at the front desk in Quinn's preschool commented on how Quinn was lookin better (this was 2 days of continuous feeds and nothing by mouth). She then said that when i first brought Quinn back to school (about two weeks prior to this day), she went home that day and talked to her husband about her and cried and cried for her. I asked her why and she said because Quinn just looked so terrible and so sick. She made ME tear up! right in the middle of preschool.This is her new baseline. She is not as talkative, and when she is, she has a very difficult time forming her words and sentences. She is much clumsier, her right leg drag is more evident, she slouches more... She definitely does better on just tube feedings. No doubt about it. But this change is truly heartbreaking for me, teachers at school, friends and family. There is comfort in knowing that I am not alone in this, but there is pain in knowing how real this really is.

And if the answers don't come from this blood test, what am I going to do? Who am I suppose to turn to? I can't just sit around and watch her fall apart on me!

Thursday, we have an appointment with the GI doctor. I really hope that he can give us a plan for Quinn's tummy troubles. Andi hope that it is something that allows her to eat without the devastating effects it has on her body.

I'm having a very difficult time getting insurance to approve anything! And I don't know why. Well, i kinda do ,but i think ti's dumb. Quinn is on a special secondary insurance for special needs children, but Quinn's pedi office is not a CCS-approved office, so they cannot order things like physical therapy, speech therapy or anything like that to help her. So basically her help is delayed because we have to wait for her neurologist to order this kind of stuff, but the problem with that is that her appt isnt until April and even then, they usually don't know what to do. I end up having to coordinate all this care and Ifeel like i'm just being a nag. i'm tired of doing this crap. This is someone else's job!!! if you find that a child is in need of intervention, I shouldn't have to work this hard to get my child into services. It should be easier since she has qualifying diagnoses for therapies and she is already in the Inlan REgional program! but it's not!!! someone is making me do their job and I need to figure out who it is because i keep hitting dead ends! I don't know if it's her docs who don't know who to talk to or what to write up or if it's the stupid people in the offices who are in charge of referrals or what but Quinn needs therapy! After seeing the differences in the children today, i have no doubt in my mind that Quinn is delayed and needs some help. Even her doc was telling me that she doesn't want to delay Quinn's medical care, but she just doesn't know what to do from here and she keeps hitting dead ends with insurance protocols and stuff like that. It's aggravating!!!

I just wish it didn't make me so sad so see her so fragile and weak and having a child her age to compare her to was really difficult.

Posted by BearHugz | Comments: (3) | Permalink

LOL, UP TOO LATE.

Feb 23, 2010 10:22am (EST)

I have been having this recurring dream for at least a couple years now...

Quinn is usually the age that she is currently in my dream...

She is sick and she is home on life-saving medications and machines and equipment and she gets a very acute illness and ends up dying in my arms with my family. We check her pulse and her breathing, and she is obviously dead. Paramedics come to the scene and they announce that she is dead and say that they are sorry and leave us to grieve her. My entire family is there and tears are filling up the room.

Days pass and I'm in a constant darkness. Then it comes the day of the funeral and my mom says that they are on their way and that she hopes to see me there. I stumble out of my house, which is on a usually busy street, but this day, it is dead as a doornail. (I don't live on a busy street, this is just the dream) There are these loud auditorium-like speakers and former president George Bush is announcing the Super-Bowl and the highlights of it. I'm walking down the dead street listening to this guy and wasn't crying, i was just sad.

when I finally get to the funeral, it was outdoors and Quinn was much further away from everyone else and she was laying very peacefully on big circle basket with a huge fluffy, super soft mattress in a blanket of roses. Everything was very light pink and white. and she was laying there on her side with her little arms tucked underneath her cheek and chin, just like how she always sleeps. I lay there with her and start crying uncontrollably and ask God how he could take her away from me. I wanted her back and I wanted her to live her life with me and never to go away. As I was crying, i was laying on her chest and suddenly, I felt Quinn breathing! I started freaking out and yelling to everyone that she was alive and everyone was telling me that I was just grieving until she started coughing. We rushed her to the ER and I was holding her wrapped in her blanket of roses and I handed her to the ER doctor and told them that she was alive! The doctor was hysterical and was yelling why i hadn't brought her in sooner and that she was near death. I yelled back and told her that she was already dead, but she didn't believe me and she was asking me why i hadn't brought her in and I yelled really loud "SHE'S TERMINALLY ILL!"

This is the part when I usually wake up. It's a recurring dream. I'm not sure what it means, but everytime I think about it, it brings me to tears. I can't tell my parents about it without leaving out details of the dream because I'll just start crying.

Quinn's tummy has been doing so well on her little amount, but i'm afraid she is loosing weight. She started yesterday with diarrhea, it let up today and she is feeling really well. I want to start her back on oral feeds to see if maybe it was just her tummy that needed a break and see how she does. My mom thinks we should wait. We still haven't gotten her erithromycin in, but I decided as a mom to kick up her Reglan to 3 ml 4 times a day. I read that it should be safe and i'm tired of getting permission from docs to do something dumb like that. As days continue, Quinn seems to gradually get weaker and weaker. Climbing in and out o fthe car is such a chore, not just for her but for me! I have a little tiny two door and before Quinn could climb into the car and get into her carseat, not without a little difficulty, but she could at least do it. Now, she needs a LOT of help doing it and it requires me climbing into the back of my tiny two door car to help pick her up and put her into her seat. OMG! my back is starting to kill me! Somtimes, she can do it ok, but even then, I still have to get her all situated with her feeding tube and oxygen. ti's just a hassle. so i have been looking into getting a bigger four door car or crossover vehicle or something. Any suggestions? Tight budget, yes but not too tight, i want at least over a 2002.

bad news: The children's hospital called and told me that Quinn's blood had been sent out for the wrong order!!! Luckily they caught it, but still, it SHOULD have been avoided. When the doctor handed me the orders, he looked me in the eye and told me that this is a test that they only order MAYBE once a year, so make sure to ask the techs if they know what to do. Which is EXACTLY what I did! Quinn got called in there, i talked to two people and asked if they knew what labs were being drawn, how to handle the blood and where it was going and they said yes, no problem. GGGGRRRR!!!! so We have to make the 3-4 hour drive back to this children's hospital to get Quinn poked AGAIN! The good thing is that they offered us complimentary San Diego Zoo pass tickets!!! woootttt!!! so we are going to spend all day Tuesday next week at the zoo.

Watching TV

Posted by BearHugz | Comments: (4) | Permalink

QUINN'S POOR STOMACH

Feb 19, 2010 05:49am (EST)

OMG. so many emotions I have been through and through these past two days! I have to focus on the positive, not the negative. The positive thing is that there is still a slight chance that Quinn might not have MNGIE. After doing some reading, it all just depends on what her lab results come back looking like. So the next two months are going to be AGONIZING as the past two days already have been. If they come back in the abnormal range, i will be faced with the reality of our situation. If they come back normal, we will be stuck where we were before as quinn still doesn't appear to be getting any better.

Her gut motility is horrendous right now. I had her on a continuous feeding of only 35ml/hr, which if you don't know is VERY slow for a four year old, she will not sustain nutrition, hydration or growth on a rate that low. I figured that if I could give her little tiny meals throughout the day, then it might make up for the hydration/caloric needs. Well, she still bloated up like a 9 month pregnant toddler. And then was hiccuping and complaining of belly pains again. I also think that she is starting to reflux as she is coughing a lot and doing some extra swallowing, particularly at night. But, I won't confirm that just yet. Seriously... this is frustrating.

Still waiting on her erythromycin to come through pharmacy, but I also heard that it can be contraindicated in Mito patients. I told the GI doc this and he said he still wants to go ahead and try it out anyway. He also mentioned going to a GJ tube to help her bloat. I'm starting to think that maybe her "new" GI doc is awesome since he actually calls me back and seems to care and is doing what he can to help, from what i can tell anyway. We are suppose to see him in a month.

This is a picture of us from our hawaii trip last summer

Posted by BearHugz | Comments: (4) | Permalink

Archives