I forgot about this........

http://www.ohsu.edu/health/share-your-story/stories/alice2.php

Today going through my facebook feed I came accrossed this which I had totally forgot about. Please take a look at it, I am so excited that Doernbecher published Alice's story.

The Plague

I am on my 3rd cup of coffee, waiting for my dear sweet Alice to wake up so I can take her to the dr. You see the week that she started school she brought home with nasty cold that we ALL now have, well everybody accept my hubby he's never home because he works all the time and so far he's the only one that hasn't gotten this nasty plague.
I have been down for the count since Monday which isn't good because I have 2 kids to take care of, a hubby to take care of, a house to take care of, my mom to help with and visit, and then finally myself.  I've been down and I guess depressed since the beginning of the year, 2016 has been a year I want to forget. Alice who was 4 at the time passed out at school and it turns out her pacemaker had broke (I DIDN"T KNOW THAT COULD HAPPEN) so she had that fixed, we were home for her 5th birthday which is Feb 1st. Then we were back for another 2 weeks because her pacemaker didn't want to stay in. Then my step dad died kinda unexpectedly in March. My stepdad's passing left my mom a widow at 52, with her own medical issues and no money, he was retired and on social security, and my mom is considered disabled due to her diagnosis of COPD. His passing left us with a whole other set of worries and issues, some have since been resolved and others have not yet been. The silver lining to all this is that I learned that my family will continue to stick by me. In our 13 years of marriage our families have been with us through everything and I can't be more thankful. Alice has been given a wonderful opportunity to go to DisneyWorld through Make-A-Wish Oregon, they decided to grant her with to meet the princesses and just spend that time together as a family and bond away from all the stresses. And now with my mom in a nursing home for her health for a few weeks my stress level has peaked and both my husband and my best friend suggested that I go talk to my doctor for anti depressants, so finally I did on Tuesday and was given a low dose of Lexapro which I think it's been helping but according to my husband he hasn't noticed a difference.
But I guess I can't say that doesn't surprise me he's never home :( But that's because he's working so much so I can stay home and take care of my kiddos and spend this time with my mom.

Happy Anniversary

Today is our 13th anniversary, I went to bed last night feeling like crap and I woke up to these beautiful flowers and a wonderful card from my amazing hubby. Even thought I felt like crap and overslept and got Alice to school late, these brightened my day more than he knows. My nose was so stuffed I couldn't smell them this morning, but after a few nose blows and a drs appointment I smelled them briefly this afternoon and they smell lovely. 

Today we also had a family meeting in the nursing home that my mom is at, they told her that they would like to keep her for 10 more days up to 3 weeks, and while that makes me happy because that buys me time in finding a place for her to go, it made her really sad and I really don't like that, but i'm glad that they are taking the time to make sure that she's doing well before they just let her go. Her case manager still hasn't come by and that is really pissing me off, for reals like why can't she come in and do her job and let us know what she qualifies for that way we can get the ball rolling. My mom falls into this black hole so to speak, where is is to young for some facilities and not sick for others. I feel that her being "to young" is age discrimination, like seriously are they afraid she's gonna be a  hell raiser? She needs that extra help, if she can do it she will try but damn she's an aging women with sufficient medical needs.

Life Today 9.26.16

So fortunatly my mom is improving which kind of sucks. She was supposed to be re assessed today and I don't think the lady showed up to do it which pissed me off because I let her know Thursday that she was in the Hospital with pnemounia and a staph infection in her lungs, her response was "ok, well I will give it the weekend and go in on Monday and see what we can figure out"......Really,,,,,,,,,,,at this point she's been on heavy antibiotics and steroids so when she comes in my mom is going to be a tiger not the tame little kitten like she normally is. I don't want her to go home and get sick again because that would just tear me apart to watch her go through all of this again which it was so scary.

Today was Alice's first day of Math Camp. I am beyond excited that both my girls love math because I can't do it. I loved math class in high school, but I just couldn't retain what I learned and that really sucked. Lynds is getting an A which is amazing, I never got an A, yes I know school just started but that's a huge thing for me. I am hoping that she keeps it up while playing Volleyball and softball when that starts. I admire her drive to better herself, we are working hard at getting her asthma under control, and working on all that comes with her skin and breathing. Lynds is supposed to be starting light box therapy which we have been trying all summer to get this approved........it's just waiting, and waiting, and waiting. It all just sucks.

I'm supposed to have a new nephew anyday, but he is being a little butt and hasn't made his appearance yet and you know I get it, I wouldn't want to leave either but I can't wait to pinch his cheeks.

This upcomming baby talk is actually giving me baby dreams. Like a few times that last few weeks I've had dreams that I found out I was pregnant, then we told everyone, then last night we found out it was another girl! We already have 2 girls, and I'm fine with not having any more but for some reason I ached when I woke up and realized it wasn't real. I don't know if that means maybe we should try again? Does anyone know what baby dreams mean? I've chocked it up to my soon to be born baby nephew giving me the perverbial "Baby Fever".

Stuff

This last week has been a week of learning about my comfort zone and what I want for my mom reguarding her health. I look forward to her getting better but am afraid that they are gonna send her home before she is ready. They have her on so many different meds to help her get better I am terrified shes gonna get home and get sicker so we will then have to go all the way through this again.
I really want her to stay in a place like fircrest where she can be semi independent but has all support and wrap arounds that she needs.

Everyday

So we have some good news, my mom seems to be getting better which is both good and bad. She's improving which we want her to do, but we are hoping her medicare level will go up so she qualifies for more assistance because she needs that. It's kind of a double edge sword, I want her to improve but not to much because she honestly needs the help.
Right now she's on 60mg of prednisone and then she's also on a heavy hitter antibiotic which is really making her feel better however, when she goes home how is she going to do without these medications? She's not going to be able to manage her health when she can't breathe well enough to get herself food, or get to the bathroom without being winded?

My Mom

Sorry I haven't been on   but I've been spending alot of time with my mom whose been in the hospital. She has had COPD for years but Thursday we found out its end stage and her dr gave her an estimate of 6 months to 1 year to live. I am devistated.....her health has kept her from doing many things and that makes me angry. I've talked about my mom on here but not in-depth, she is 53 and has COPD, she's been on oxygen for years to many for me to count. Monday I took her to the hospital because she couldn't breathe, well it turns out she has pneumonia so it's a good thing she went in, well thursday they told us that not only does she have pnemounia she also has a staph infection in her lungs.......WTF.......I just don't know what to do. I am a paid caregiver for her so that helps but she needs more help and more care than I can giver her and that sucks.

I am feeling all sorts of emotions, guilt, fear, anxiety. I'm scared to live the rest of my life without my mom, I have children so I now understand how deeply she loves me and in a sense I feel like I am letting her down by not being there more for her, or not giving her more in what could be her last days. She is disabled and on social security, so she is on an extremely fixed income and can't afford things she once could, but honestly I can't afford to do much for her because I have 2 kids as well whom both have health issues and each need special care.

I am at a loss, she really wants to come live with us but I really think staying here may be more harmful to her health because of the smells my house has. It smells musty no matter what I do, I use lots of lemon scented cleaner to clean the floors and what not but she can't tolerate that either. The smells really, really get to her and make it really hard for her to breathe.....I guess I wish I could be a better daughter and give her everything she wants and needs in her last days, but I just can't.

Bad News

So my mom has been in the hospital since monday, (today is thursday) with pnemounia. We know that she has COPD, she's had it for about 10 years but today the hospital dr came in and told us that she now has end stage COPD and he gives her 6months to  1 year to live. MAN! I Just lost my step dad 6 months ago to end stage COPD I don't want to lose my mom to the same thing so quickly. Yesterday I spent the afternoon helping my mom fill out her advanced directive, and have been trying to re assre her that everything will be fine. I have no idea how things are going to get paid for. Sometimes I can barely pay my own bills and Im still paying for my step dads funeral.

This Booger!

This booger right here is in Kindergarten, I spent all summer prepairing myself for this and now in her second week I find myself constantly missing her. On her very first day my mother inlaw asked me what im going to do with all my alone time? My answer was I dont know because Im at the hospitial with my mom. 

Since school has started I've been to more hospitals and more drs appointments than i care to admit. My whole point of this post was that I miss my baby. 

I picked her up from school today, went to sisters volleyball game, and came home. All afternoon she was perfect, polite and made me miss her so much more. Bed time is 8pm, and about 9:15 she came abd asked if I could walk with her to the kitchen to help her get water, my heart bursted with joy...I know she can get it herself. I love my girls, they are my life.

Just Another day

Today is another typical gloomy day in Oregon. The sky threatens a down pour... but this is Oregon, the weather can change in an instant. While occupied by the weather I checked my PO Box in normal fashion and discovered the above gem. 

As you can tell by my blog name I love coffee, and any vessel to get it to my mouth is my favorite, but this one is amazing. But what makes this even better no one is claiming to have sent it to me, so I now have a secret admirer.

My Girls

I'm starting to come to this time in my life that my girls don't need me. I was okay with this, until my 12 decided to go get a life. Now I am missing her like crazy, she's my partner in crime and I miss it. I am so happy that she has friends she'd rather be with because there for a while I was really unsure of how she was gonna be. I didn't want her to be one of those weird antisocial people that want to hurt people (not that she would). Lyndsey is so gentle and kind hearted she's one that gets walked all over easily. Im really trying to teach her to stand her ground, to help those whom can't help themselves and to be the kind of person she would want to be friends with. Luckily we live in a small town and she's gone to school with most of the kids since Pre-k which is amazing, but that is also kind of a bad thing because everyone know everything.

Alice just started kindergarten and is always excited to see me waiting for her after school. IT's really the best feeling in the world. The beginning of her life was so touch and go every milestone she hits is huge for me. Alice was born with AVSD (Atrial Ventricular Septal Defect) which is a fancy talk for she had a big whole in the chambers of her heart. We didn't find out until she was 3 days old and this broke my heart.

https://www.cincinnatichildrens.org/patients/child/encyclopedia/defects/graphicsummaries/avcgs (This is a picture of what is looks like)

We were told there was basically 3 surgeries that they were looking at

1) Because of how complicated her defect was they were possibly transfering us to stanford university for a heart transplant

2) Training her heart to beat the other way. Basically it over a series of surgeries her body would pump it's cirulatory system backwards, this would wear out the heart quicker and she would eventually need a heart transplant

3) They had a cardiology conference they were going to present her case to about 100 different pediatric cardiologist nationwide where they would work together to find a solution.

Option number 3 is the one that ended up winning and on April 14, 2011 My 2 1/2 month old baby girl had open heart surgery and because of complications that happened before her surgery no one expected her to make it through the surgery. We went in for surgery on April 4th, but she ended up having a full code and was placed on life support they waited 10 days and decided well it's now or nothing.

I always tell people expect the worst but pray for the best, I have used this many, many times. If you expect the worse and that doesn't happen that it's golden. That 8hrs was the longest of my life, baby girl came out of it better than anyone expected but since she was so finicky before surgery all we could do was hope and pray which we did.

Life.....

So 2016 has been one heck of a complicated year. January my then 4 year old fainted at school, she was then taken by ambulance to Doernbecher where we stayed for 5 days, then we were thankfully home for her 5th birthday but shortly after we were re admitted in Feburary because her pacemaker was trying to make a break for it. The second stay was for 2 weeks where they tried to rule out infection. She was let out and we resumed a somewhat normal life. She couldn’t go back to preschool because she needed 8 weeks of healing and well preschool got out mid may so it didn’t make any sense to have them hold a spot for her when she’d only be back for one week.

March my oldest turned 12 and had a good low key birthday celebration which was just what we needed. My oldest also needed her tonsils and adnoids out, this went off without a hitch but a week later she ended up hemmoraging and needing to go into emergency surgery which ended up being harder to fix than they thought and they ended up stitching up her throat. Towards the end of the month my step dad died, very quickly, very suddenly and it left our life in shambles. I have never seen my mom so shaken. and miserable as I did after he died, and she is still this way almost 6 months later. Because they wern’t actually married when he died all his benefits went with him. My mom was left with nothing but her meager ss money she gets because she is permanetly disabled.  She was left with bill, funeral expenses, lonliness, and a void that nothing could fix. Because of the amount of money that left she was unable to pay her bills. Thus brings us to the here and now. We are looking at places for my mom to go.

My mom isn’t that old, she’s 53 but she has COPD and is on oxygen 24/7 and just can’t get around well because she gets so winded. She needs someone with her at all times to monitor her as well as someone helping to shower her and get her to eat. I really feel like she’s on her last leg and it terrifies me that she’s dying. I know with COPD she’s basically going to suffocate to death and it’s really hard for me to hear her complain she can’t breathe.

I don't know how I feel....

This Make A Wish trip has been way more emotional than I ever thought possible. So much so I would like to work with this organization sometime. We got confirmation on flights today, this for me was the point of “oh my gosh this is real!” We know when we have to be at the airport, we know when we will arrive home. This is all real, done by a wonderful organization that just wants kids to have fun and be kids!

Kindergarden

So much has changed in the kinder classrooms since my now 7th grader roamed those classrooms. Now there is more technology, parents can use the app class dojo to check on their kids to see if they have been naughty or nice, and now kids seem to be meaner than ever. Since Alice has a pacemaker I suggested that I write a letter that the teacher can send home with students that the parents can read and use that as a guide while they explain and the appropriate way to their children, I left my email at the bottom of the letter so any parent can get ahold of me if they had any questions. I haven't heard anything and I know this "no news is good news" is complete bs.

Sooooo........I'm not even sure if Parents have taken the time to talk with the kids about what it is. I don't want to draw too much attention to it but I want them to be aware. I don't know if I should maybe do a classroom assembly type thing, or just leave it alone. Decisions, decisions.....

Good news!

We got word last night that Make A Wish Oregon is Granting Alice's wish to go to DisneyWorld right before Halloween so they get to go trick or treating and to meet the princesses.

Life as we know it!

Alice was born with a Congenital Heart Defect called Atrio Ventricular Septial Defect (AVSD) when she was about 2 months old she went in to Doernbecher Childrens Hospital for her first Open Heart surgery. Her surgery went well but her heart didn't start up correctly so she needed a pacemaker, that pacemaker was placed in April 2011 and worked perfectly until January 2016, 5 years! 5 years is all we got before one of the leads fratured and she passed out at school and we were taken by ambulance to Doernbecher which is where we informed that her pacemaker had fractured and she would need a new one. That day they took her back and changed her pacemaker, she healed amazing and we were sent home about 4 days later.

About 3 weeks later we were back at dornbecher for a 14 or 15 day stay because her pacemaker didn't want to stay put. It actually was trying to break out of the skin so they did 10 days of antibiotics and then they re-did the placement of the pacer and 5 days to heal and then we were home to heal which was amazing.

Right after this happend my oldest had her tonsils and adnoids removed this is her very first surgery, 7 days after the surgery she ended up hemmoraging and had to be taken back up to doernbecher where they tried to cautorized the hemmorage but that didn't work so they had to place 7 stitches in her throat, and she spent the night. This was my January-March!