Tuesday, August 31, 2010

Hospital...Super Sick

Sorry I haven't gotten this posted here at all, most of you know from facebook, and the wonderful world of texting! :)
But Eli was direct admitted to the hospital last night. At home his O2 sat dropped considerably and I had to turn up his O2. Doc said bring him in and did a direct. By the time we got here Eli had gone fom his normal 1/2 liter/hr to 4 liter/hr. He was up till 2am getting chest xrays, labs etc. His chest xray showed both lungs worse than ever, full of infection. His WBC was over double what it should be. He has a sinus infection, the pertussis, pneumonia, reactive airwary, and something that we can't figure out they think. They want to do a chest CT, but he's not stable enough for the anesthesia right now. He's getting breathing treatments and CPT every 2 hrs, with deep suction as often as needed, steroids, antibiotics, and all of his normal meds. Right now he has his nose canules on full time, he has a mask running next to him for rescue, and then he has deep nasal suction hooked up to 1 suction machine, and then oral suction hooked up to another. Takes a large group of us to run everything during a "rescue mode".
This has by far been the scariest journey I've ever been on. Watching tiny's O2 sat fall, and watching the nurses rush in, and all of us kicking into "rescue mode" as his lips are turning blue. The moment it's done I realize how scary it is.
There is tons more I'm sure but right now I'm too tired to type it all. I will update more tomorrow.

Sunday, August 29, 2010

Super fast updates

Quick Updates.
I'm exhausted tonight so updates will be short.
Benjamin has his 1st loose tooth, and it's super duper lose. He's pretty excited, so we'll see how he feels when it comes out.
Jace and Ben have also started their new meds. Today was day 2. We know it can take a bit to see results, so we are waiting, but definitely hoping.
Emily's school has gotten her started on an advanced work load, which she will do for a few weeks while they do full testing. She's exciting for a bit of a challenge.
Mr Eli is not doing well. He's having trouble keeping his o2 up, so is on oxygen full time and even then it's not where we would like it to be, especially since he's on oxygen full time. It's making his heart rate go up too high. The doc said that working so hard to keep his oxygen up is putting alot of stress on his little heart. It's a mess. He's coughing so much. Treatments and CPT are helping break up maybe 5% off the crap in his lungs and he doesn't have enough strength right now to cough it up. It's not been fun.
More updates hopefully tomorrow.

Friday, August 27, 2010


Tonights a feelings blog post. Will there be some updates, sure. But mostly tonight is me dumping all of my feelings into words.
I'm so damn angry 1st of all. Angry that this is my life. Angry that I'm having to fight this battle every single day. I'm never angry with Eli or the kids but angry with the situation. Angry with our DME when something doesn't work, angry at the pump for beeping, angry at the clock for going so fast, angry at the nebulizer for leaking. Angry at everything.
Then I'm jealous. I'm jealous of everyone who doesn't have to go thru this. Everyone who gets to sleep thru the night. Everyone that gets to curl up with their baby and take a nap. Everyone who gets to nurse. Everyone who can just load their baby in the car and go shopping. people who don't need nursing scheduales, and 14 specialists, and scheduale making, and hours counting, and report 2 times a day minimum, and vitals and stats and meds. i'm so damn jealous of everyone who can just cuddle their baby. i have to adjust a minimum of 4 cords everytime I want to cuddle my son.
then i'm sad. sad because i have to watch my little man go thru all this. it's hell on him. the torture his little body goes thru it's not fair. (that takes me full circle to angry). then i'm sad for my 4 older kids. they have to watch tiny go thru this. they don't get a "normal" life. they know what each monitor is what it does, how to run it, what each beep is, what the numbers mean, how to carefully move their little brother to play with him, and worst of all they know how tough it is to take him places. they know that the 5 after school activities that they might want to go to can't happen because i can't be in 4 places at once and haul tiny along. i'm sad for me....yes i do have a little pity party (as some would call it) for myself sometimes.
i'm tired. oh soooo freaking tired. am i physically tired. i think so. emotional and mentally. pretty sure. do i know for sure anymore? i'm not 100% positive. i'm so exhausted and so numb. i don't know which way is up or down half the time anymore. we don't sleep. we are up and down all night trying to help eli stay safe and comfortable.
i'm lonely. i miss my friends. i miss getting together with people. i miss playdates. i miss company. i miss chatting and gossiping about things that mean nothing. i miss conversation that doesn't revolve around heartrate, respirations, o2sat numbers, GT feeds, and medication doses. i want to do something that doesn't affect someones life deeply, i don't want to know that i have to be in charge. i don't want to be responsible for 5 minutes.
i'm so tired of hearing how strong we are. i'm so tired of hearing that nobody knows how we do it. i'm tired of hearing if there is anything we can do let us know. i'm tired of hearing "praying for you" "hope all is well". it isn't well. prayers aren't fixing it. i want someone else to be strong right now. i want someone to tell me it's ok to absolutely fucking lose it and curl up in a ball and cry. i want someone to call and chat and gossip about meaningless nothing, because what everyone doesn't get is it means soooo much to me right now.
i just want my life back. i want to feel normal. i want to be me for 5 minutes. i want to just break down and lose it and know that it's ok and that someone else can be strong enough for me too. i want my tiny man to get better. i want this to all magically be ok.
oh and did i mention i'm scared. scared might be a main one, maybe, i think. i'm scared about what next. when will it end? when will it be ok? everytime my phone rings and a doctor calls i'm scared what they will say next. everytime something beeps i'm scared. i'm scared that i can't keep doing this.
i'm sorry this is a huge dumping post but i don't get to dump often. it's normally fake strength and a smile and just keep pushing thru in auto-pilot. fucking auto-pilot.

to end with a funny. i saw his today and thought it was hilarious so have to share, so as not to depress everyone with the above post...
"It's all fun and games until you realize the "rocket" in your kids's Lego launchpad came from the drawer in your nightstand..."

Tuesday, August 24, 2010

Love Being Right

"In terms of age in years, dictionary definitions generally designate preadolescence as the years from 10 to 13 (ages 10-12 for girls and 11-13 for boys),[4] although there is no exact agreement."
"A blend of between and teen,[5][6] "tween" in this context is generally considered to cover the age range from eight to twelve years."

The above is from
Wikipedia Preteen

Monday, August 23, 2010

Monday Afternoon

Bob~ His new work scheduale started yesterday. It's definitely going to take some getting used to. We were both definitely tired this morning. He's trying to get into the new work scheduale routine and school that started this last week as well.
Me~ I'm busy with the kids and school. Not much changes with me. I go for my 6 week post op appt on Wednesday and I'm ready to be completely released back to normal life. Other than that it's same old same old for me!
Emily~ She's enjoying school, mostly. The work is way to easy for her and she's super bored. She's having to take her own books and such to school because she's past the level that they have available. It will take 4 to 6 weeks for them to finish getting her fully tested for the gifted program, but then she can again hopefully be challenged a bit at school. Other than that she's doing well. We have all the lovely preteen issues going on, but we knew that was coming soon.
Jace~ He's enjoying being back in school as well. He has already made quite a few friends, and has already been invited to a birthday party this coming weekend. He's excited about that. He had his 1st spelling pre-test today, and struggled a bit, so he'll be spending some afternoons working on that.
Ben~ He's doing pretty good with school. The work has been pretty easy for him so far. He's struggling a bit with the busy afternoon at school, and is falling asleep each day on the bus. Luckily the neighbor girl wakes him up when they get to our stop and walks home with him. His swing is on backorder, so won't be in for approximately 30 days. He's looking forward to getting it. Then he can safely swing and hang upside down!
Ari~ She's bored. Super duper bored. She's not quite sure what to think about everyone being gone so much. We are going to have to look into moms day out program or something so that she can have a chance to be around kids her age!
Eli~ Tiny man is still sick. He's pretty miserable. So far he's lost 1 1/4lbs and has been off of full feeds for over a week now. As of this afternoon the doc has put him back on full feeds, with a pedialyte bolus between feedings. Hoping that will atleast keep him hydrated. He had PT today and has definitely lost a few of the skills that we were beginning to work on. He also met with the ENT today. They did a basic nasal scope and said all looks good there. The ENT and pulmonologist will be getting the rigid and flexible broncoscopy schedualed as well as the PH probe. The ENT is unsure yet about Eli's lack of verbalizations, and PT and speech are going to at this time continue working to get Eli to begin using sign language. Once he can wave, they will really begin to push signing with him.

I don't know what else is coming up this week so far. I know there is stuff, but I honestly don't remember what. Right now with Eli being so sick it's really been a day by day kind of thing. I will try and get updates and pics up soon!

Wednesday, August 18, 2010

1st Day of School Pictures

Ben is curled up with me on the couch so I figured I'd sort thru the 1st day of school pictures and actually get a few up! :)

Benjamin had no interest in taking pictures so they are all pretty goofy.

I begged him for 1 smiling picture and this is what I got! :)

Full Household Updates

For those of you who think Brian is an amazing man, (from what I know there are none of you out there that think that, but just in case) here is his newest comment.

"Seems to me the spawn of your adultery partner is stealing most of my kids' thunder.
By Brian on Everyone's sick. at 12:31 PM"

This coming from the man who hasn't called, emailed, or texted to ask not 1 single question about HIS kids. I spend every day and every minute and every penny caring for them, he does nothing yet he thinks he has the right to post shit like that? WTF

Anyways on to shit that actually means something at all.

updates forward to backward this time! :)

Bob and I~ Bob's working, and we both are busy with school. It started for us this week as well. All of our classes are online, we only have to go to school for our A&P lab. So that's nice. Bob's scheduale changes starts on Sunday, so that will take some adjustments.

Emily~ She's doing well. She's already bored with school. They are working on basic multiplication, 0's and 1's, which Emily and I learned last year with homeschooling. They will begin her testing soon for the gifted program.

Jace~ He's excited to be at the elementary school this year. His class is starting off slowly and hasn't had any homework yet. He is super excited to be reschedualing his next baseball game, since the last one ended in a rain out!

Benjamin~ Today was his 2nd day of school. He's done well so far. He's been on the big boy bus and has done well. He's pretty tired by the time he gets home from school, so it's a bit of a push to get him to make it till bedtime, but so far so good. They are working on getting his in home speech set up so they can get the TEACH scheduale set up more efficiently at home.

Ariana~ She's missing everyone as they've all gone back to school this week, but on the other hand she has enjoyed the afternoons with just the 2 of us. This afternoon we went out and got her hair cut. She's looking super cute!

Eli~ My tiny man is still miserable. We had the pulmonologist yesterday. She's going to go ahead and get everything schedualed or the flexible and rigid bronchoscopy. They are also going to run a 24hr PH. So hoping that will give us some more answers. Today Tiny had to go back to the Pediatrician because his cough is just getting worse and worse. They have finally figured out what's going on....Eli has pertusis, which is whooping cough. He's already been treated for it, so he's no longer contagious, but now we are just left with this horrible cough. He's miserable. The rest of the house is being put on a propholactic dose of antibiotics just in case. ***almost forgot. this morning was the genetic counselor and geneticist. They decided to run a full chromosomal test. It s a microarray that looks up and down every piece. It will take 6 to 8 weeks to get the results and then we will go from there.***

Not much else new is going on. Just getting thru each day. More updates in the next few days as well as pictures from the 1st day of school.

quick update

quick update and i will get full info up later today.
eli is getting worse and worse. met with the pulmonologist yesterday. she's going to be schedualing a 24hr minimum hospital stay for the flexible and rigid broncoscopy and endoscopy. also pushing for sleep study sooner.
today is the local genetic counselor with video phone conferencing with the genetic doctor in Louisiana. I'm excited and nervous. maybe we will finally get a full diagnosis. maybe we won't get shit and we'll just be told we have no idea what's going on and what's causing all of this, we have no answers, but we promise to keep trying.
humph i'm so damn tired.
more updates later today.

Sunday, August 15, 2010

Jace's 7th Birthday

Jace had his 7th birthday on the 6th of August. We had a family dinner here at home on his birthday and he got to open a few presents. Then yesterday was his big present and party. He has been wanting to go to a Wingnuts baseball game so my mom looked into their party packages and he was had no clue! We were able to keep it a secret all the way up to pulling into the parking lot! He had a wingnuts cake and got a picture of the team! Then we had front row seats for the game. THEN he got to throw out the 1st pitch from the pitchers mound! He got to meet spinner the mascot, check-out the dugout, meet players, get autographs, and get to keep the 1st pitch ball! He was super excited! As the game was beginning a few low rumbles of thunder could be heard and a few drops of rain. Once the game had began I took my dad and Eli home and everyone else stayed. With my dad not being able to see anything and Eli still getting over being sick everyone figured that was best. Everyone else got to watch the game, until it was ultimately called because of the massive thunder/lightening and rain. Jace is now even more excited to go to his next game! :)
I will upload some pictures now, but can't seem to get the video of his pitch to upload right now.

Jace's Cake

Jace and his friend eating cake

Jace and friend tired of pics

Bob and Eli hanging out after cake and presents

Wingnuts sign and flag

Everyone waiting for game

Bob and Eli hanging out in the seats

Jace getting to meet some of the players

Jace and Spinner the Wingnuts Squirrel (As you can see Jace was getting super nervous/excited about his 1st pitch coming up in a few minutes! He did great though and was super excited!!!)

Jace getting to checkout the Dugout

Flag Ceremony before the game began

Friday, August 13, 2010

Eli getting worse, not better

HOLY CRAP. it's been a loooong day. Ended up in the ER with eli. He was coughing and gagging so badly. They did treatment and suctions and tests. Sent us home to wait for new medical supplies. We now have an O2 sat monitor and a suction machine. He's on continous oxygen, and breathing treatments every 3. He's miserable. My poor tiny man.
the good news is we got to try out the brand new hospital out here in Maize. It just opened on Monday and it was super duper awesome! Would 100% reccomend it!

Thursday, August 12, 2010

Everyone's sick.

It's been a heck of a week.
Bob and I had our 4 day Biology rewiew, for 4 hrs a day, 2 tests a day.
Saturday morning Jace woke up sick. Monday middle of the night Emily got sick. Tuesday middle of the night Ari got sick. Wednesday middle of the night I got sick.
This is ALL on top of Eli being super sick.
Bob ended up having to call the doctor at 4am this morning. Eli was coughing and choking and gagging so bad he could hardly catch a breathe. So we are back on breathing treatments every 3 hrs followed by 5 minutes of CPT per side. They are trying to get him an O2 stat monitor. He's on oxygen pretty much constantly right now. He's miserable.
Jace, Emily, and Ari are all better mostly. Ari is still a bit tired but her stomach is all better. I'm done with the stomach part as well, that piece was super short lived for me, but my body can't seem to get past the fever that I've had all afternoon. My head is throbbing.
So all in all it's been a crap week. luckily our class is done and now we start our semester classes on Monday. Highly unlikely that we will ever take a 4 day class again.

Wednesday, August 11, 2010

Sick Mr Eli

Mr Eli has pneumonia. His cough never went away and just kept getting worse. To the point he was choking and gagging. Doc had us bring him in today. His O2 was 93% and he's grunting. Did a chest xray and sure enough Eli has pneumonia. No freaking clue how that has happened. As Eli is obviously NPO. So all we know is fluid is getting into his lungs and we don't know how. Going to keep him on the Ktank as it's the purest oxygen right now for ALL naps and sleep, instead of just the longer ones. Call into the pulmonologist so just waiting to hear back from her.
I'm scared. I don't get what the heck is happening. I just want Eli to be ok. I don't understand why my tiny man can't get a break. It's just not fair.
More info when we get it.

Monday, August 9, 2010


My kids have a roof over their head, gas, electric, water, trash service, phone service, cable/internet, they have a bedroom, each of them has a bed. They have working bathrooms. They have clothes in their closets, shoes, shampoos, soaps, hair accessories, general bathing/hygiene products. They have toys, books, colors, bikes, balls, movies, Nintendos, Wii, computer access. They have school supplies, bookbags, PE shoes. They have food, 3 meals a day and 2 snacks. They have unlimited access to medical and dental and prescription as needed. They have holidays, birthday partys, birthday presents, cakes, friends over, get togethers, family adventures, etc.
They have not gone ONE SINGLE DAY without. NOT ONE.
Has it been rough? Sure. Has it been worth it? FOR SURE. My job as a parent is to sacrifice so that my kids have what they need. I have sold every piece of jewelry, every designer purse, every piece of designer clothing, every single thing I can scrape together of mine, I've sold it. I've gone without food or snacks for myself, so they could have what they need. We are going to school to be able to get better paying jobs, and we are doing it online so we it won't interfere with caring for the children. Bob has worked countless hours of overtime to be able to pay the bills. We've budgetted, we've cut corners, we've clipped coupons. We have 1 vehicle, because we simply can't afford 2. We live in a city that doesn't provide busing, so no vehicle isn't an option for us. We watch where we drive so we can save on gas. We make what we have last and stretch.
But my children haven't suffered NOT ONCE. I have provided. They have what they have because of the sacrifices that Bob and I have made. Do I want a reward for sacrificing? HELL NO. It's my job. I'm a parent and that's what you do. My reward is watching my children grow and be happy. My reward is during grocery shopping my kids are searching thru the boxes of cereal looking at the price per ounce and thru the coupon holder to see what we have coupons for. My reward is watching the excitement on Jace's face when he opens his present and it's a used copy of Mario Kart for his DS. He doesn't care it's used and was WAAAAY cheaper. He just cares that it is something he wanted so badly, and he finally got on his 7th birthday. My reward is Ari running along behind everyone shutting off lights, cause lights cost money. Ben closing all the blinds in the house to keep the house cooler. My kids are learning how to budget and save money and how much things cost. They are learning to appreciate the roof over their head.
I get the joy of talking to my kids every day, watching them grow, being part of their excitement when they lose a tooth, or when their surprise birthday party is coming up. I get to watch as Ben learns to read his 1st words. I get to celebrate with Ari for finishing her potty learning.
NEVER EVER EVER does anyone have the right to question what I'm doing and if I'm responsibly spending MY OWN money. My kids have a roof and utilities and clothes. What more freaking proof do you need?

Oh and did I mention that I've spent the last 2 years paying the price for bills that were incurred during my marriage? I've paid all the utilities here that were never paid, I've lost my dang taxes for 2 years now to back taxes. I'm left with the van payment, the furniture payments, I have collection calling constantly for bills that were incurred. And lets not forget that I'm paying for the 4 children and raising them 100% without their father because he's enjoying eating every meal out, going to casinos, bars, karaoke, smoking cigarettes and cigars, drinking alcohol, having someone else clean his room and do his laundry, purchasing electronics, travelling to concerts, and visits, and who knows what the heck else he's doing.

Monday Check In

Today was the 1st day of classes for Bob and I. It was a long 4 hrs, but nice to be back in class and working towards our goals. This class goes for 4 days, 4 hours each day. We have 2 quizzes a day, for a total of 8. Our entire grade is based off of these 8 quizzes. Today we had the 1st 2, and I scored 100% on both. Super happy about that. Now to just make it thru the next 3 days. Our full class scheduale starts next week, and all but the lab will be online. So that will be nice.

The kids are well. Jace turned 7, this last Friday! I can't believe how much time is flying by! His party will be this coming Saturday and it's a surprise! I will post details AFTER the fact! :) Don't want to risk him finding out!

Emily, Benjamin, and Ari are all doing well. Enjoying their last week of summer before school starts back up. Luckily for me all of my kids enjoy school, so it's not an issue at all for them for summer to be coming to an end!

Eli was doing well. He's been slowly gaining. He just can't seem to get past this cough. He's coughing so much today I guess that he's been gagging. I have a call into the doctor currently and just waiting to hear back.

Not much else in news honestly. Life is busy as always. This Friday is date night and Bob and I are definitely looking forward to an evening out just the 2 of us! Then we have 1 more week before scheduale changes. Fun times.

More updates soon.

Wednesday, August 4, 2010

Busy Week so far

It's been a super busy week so far. Bob worked 12 hrs sunday and monday, then worked 7 1/2 hrs tuesday night, then 12hrs again today and tomorrow. Then our nurse was sick, so it was me at home with no vehicle, no hubby, and all 5 kids. Fun times! The AC crapped out, so it was super hot for many days. They finally got it fixed, and it's been much better since. There was a leak and it took a bit to fix. I did however get some crochetting done. I finished a blanket for Mr Eli. He is in love with it and has enjoyed curling up with it for naps.
Lets see...Other news.
Eli had his monthly appt with his surgeon. She said he looks like such a little chunky monkey! Which comparatively he does! He's 14lbs!!! Getting so much bigger. She increased his balloon from 6cc to 10cc, to see if that helps with the bit of give and leaking. Eli also had PT this week. Did alot of pre-crawling, pre-sitting, and some basic rolling work. He gets tired so easily. Only can seem to work on these things for about 3 minutes before he's beyond exhausted. And by exhausted I mean to the point where he can hardly even keep his eyes open. She's concerned that his oxygen is dropping during the day as well, especially when he's working, and suggests we talk to his Pulmonologist about all of this. Which we will be meeting with soon!
Emily got enrolled in school this week as well. She's super excited. They will immediately begin her testing for the gifted program, since academically she is so far ahead. We are keeping our fingers crossed that socially it isn't as hard for her this year. Last year was rough for her in school.
Jace is super excited for school to start. He's going to a new school, since he is no longer in primary school, he gets to go to the elementary building to start 2nd grade!!!
Benjamin of course will be in the primary building for kindergarten. We have his IEP transfer meeting next friday, and we are really looking forward to getting some detailed information and getting everything set up for him. He will have a para and that will help, but we definitely have some other things that need discussed.
We are going to look into the parents as teachers preschool program thru our district for Ari as I think she would really enjoy that time to be around kids her age.
Bob is working working working. Not much else to report. We are all so proud of him, and everything that he does for our family. Looking forward to spending this weekend, and celebrating Jace's 7th birthday!
I'm doing pretty good. Still sore by afternoon, and exhausted by evening but able to do a bit more each day. I don't have another check in with my doc until 6 weeks post op so that's good.
More updates as I can. These next few weeks are hectic. Eli has multiple appointments, the kids start school, Bob and I start school, Bob's scheduale changes at work, and who knows what else will come up!

Sunday, August 1, 2010

8 months old today and he half rolled!!!!

I got Eli all hooked up on his feed and situated him flat on his back in bed like we always have. Went back in when his pump was beeping and my tiny man was up on his side sound asleep. He got to this point AND held it in a fashion that he was able to fall asleep and stay there!!! Maybe he will figure out how to roll! i know at 8 months old this seems WAY late but for Eli this is a huge accomplishment! i'm super excited for his PT to get here on Tuesday and tell her.

Being a typical mom I grabbed my cell phone, turned on the light for half a second and took a photo of my tiny boy. It's a crappy pic and the light sucks but i don't care! i'm super excited!