Thursday, June 28, 2012

Life's directions

I'm always amazed at the direction life takes you!

When I had 3 boys, we talked about adopting a little girl. I always wanted 4 kids. We discussed it a little bit, but never got serious about it. After I started working on the surgical unit of the childrens hospital, I told Ray I wanted to adopt a baby with a heart defect.

He thought I was nuts!
The funny thing is, I don't remember much about getting pregnant with Jax. I don't remember if we said, lets try one more time for a girl, or if we weren't really trying but it happened. Either way, Jax was meant to be here.
After the disappointment of Carter not being a girl, I told myself I was not having another baby. No way was I going to just try again and hope for a girl. That's where my memory suddenly fades, and we not only ended up with another boy, but a very special boy. I had my heart baby that I wanted to adopt so badly.
The first few years of Jax life were so chaotic, so heartbreaking, that we were just trying to survive!
But when the talk of adopting a little girl came back up, it had changed directions dramatically!

I wanted a little girl that sported an extra chromosome. I was worried a little bit. I had always wanted a girl. Would a little girl with Down syndrome do everything I dreamed a girl would? I wanted a girl that I could put in a dance class like I did. One that would go shopping with me, and be my buddy.
Not only did I get that, but I rescued a little girl that was doomed to a life of tragedy.
I got a little girl to dress all in pink, with pretty pink bows for her hair. I also got a little girl that doles out kisses like no other!
I'm the luckiest momma in the world! And to think that if Jaxson hadn't come into my life, Arina would not have come into my life either.
I was destined to have that fourth baby boy, the one that I swore I would never have. I swore I would never birth another baby, that adoption would be our only next child. Jaxson helped to bring our baby girl into our lives.

And I know I've said it a million times, but being the momma of a girl is everything I ever dreamed it would be! And quite honestly, I think her extra chromosome makes her even cuter!

*By the way, enjoy this horrible picture of me, it's rare, and doesn't usually get posted!!

Monday, June 25, 2012

Sudoku anyone?

Our warrior boy is finally getting back to somewhat normal. Although he still seems very dry, and most of the time his color is still pretty yucky.

Although he is finally starting to lose all the ugly bruises and battle wounds the hospital doles out.

When they tried finding an IV in Jax, the only place they had luck was under his armpit! They tried tiny veins in his chest as well, but he really just has nothing left.

Which leaves us in our current situation. Hematology came and saw Jax inpatient. We'd been trying to get our appointment scheduled, but referrals and such took forever! When we finally made an appointment, the only time was during his hospital stay, so she said just to have them come down and look at him then.
Ok, here it goes. Jax has to be on blood thinners for the rest of his life. Right now he is on lovenox, which is given by shot. I've been poking my son twice a day for 3 years! The doc would like to switch him to coumadin, but its much harder to regulate in children. It would require frequent blood draws to check levels.
Uh, ya right! Its hard enough to get monthly lovenox levels on this kid!
Apparently lovenox has a bad side effect of making bones brittle. Of course, when I heard this one, I about fell on the floor! Jax has severe osteoporosis right now.

Like, "I can't believe he hasn't had more than the one break" kind of severe!
I guess I should be proud that I haven't broken my sons legs changing his diaper or moving him around? Ahem!

Anyway, she really wants him off the lovenox, but we can't do coumadin knowing how hard it is to get blood from this kid. Its just too risky. She also told me that Jax can't have a port!
Huge slap in the face to me. With all the veins in his chest gone, there is no place to put a port.
So basically, we're kind of screwed!

Many times Jaxson reminds me of that game, sudoku. You know the one? The one where you have to put all the numbers 1-9, but they can't be repeated?
Sometimes you think you have it figured out, only to find you've used one number twice. Or you need a number, but it can't go there.

Jax is such a puzzle. It seems impossible to get all of the numbers to go where they are supposed to go.
We can't do this because of this, or we can't do that because of the other problem.
In the end, we usually find a way, however difficult it may be. We have a follow up Hemoc appointment in a couple weeks. We may be looking at a full venous scan, to look at what Jax does indeed have. Something I've wanted for a long time anyway, just so we know which veins are patent in an emergency situation.

We'll get 'er done, we always do!

Wednesday, June 20, 2012

Big girl status!

A certain someone has declared big girl status!

Now who could those cute piggies belong too??

Well of course, since she is the only princess in the house!
She is thinking she is a very big girl.
After all....

She wears big girls shoes,

Sits in the big girl chair,

and eats with the big girl utensils.

Yes, I do believe we have a big girl on our hands now!

Tuesday, June 19, 2012

We all go Gaga!

All I can say is wow! No way can I stop blogging! I never really thought I'd be able to stop, now I know I can't.

Thank you all for loving Jax and my princess. I know I can't dwell on the past, but I can't help but think if I'd had the blog the two times we almost lost Jax, how much the support would have meant to us. Those were some dark times, and Ray and I really had to look deep within ourselves to keep going for the boys!

I love Lady Gaga. I love her music because its dance music, and I'm a dancer. I love that she is quirky. I love that she prides herself on being different. I had a good friend in high school that used to always wear the weirdest things. She loved to stand out, and wasn't afraid to look different!
Two days ago while me and my princess were jamming out to Lady Gaga in the car, I actually noticed some of the lyrics to Born this way. I've heard this song a million times, and even sing along to it, but for some reason never really "listened" to the words. I looked them up online, and this song makes me love Gaga even more!
I deleted the parts of the song that are irrelevant, but know there is no cussing in this song. I just tried to shorten it to the point!

My mama told me when I was young
We are all born superstars
She rolled my hair and put my lipstick on
In the glass of her boudoir

"There's nothing wrong with loving who you are"
She said, "'Cause he made you perfect, babe"
"So hold your head up girl and you'll go far,
Listen to me when I say"

I'm beautiful in my way
'Cause God makes no mistakes
I'm on the right track, baby
I was born this way
Don't hide yourself in regret
Just love yourself and you're set
I'm on the right track, baby
I was born this way

Oh there ain't no other way
Baby I was born this way
Baby I was born this way
Oh there ain't no other way
Baby I was born this way
I'm on the right track, baby
I was born this way

Give yourself prudence
And love your friends
Subway kid, rejoice your truth
In the religion of the insecure
I must be myself, respect my youth

Don't be a drag, just be a queen
Whether you're broke or evergreen
You're black, white, beige, chola descent
You're Lebanese, you're orient
Whether life's disabilities
Left you outcast, bullied, or teased
Rejoice and love yourself today
'cause baby you were born this way

No matter gay, straight, or bi,
Lesbian, transgendered life,
I'm on the right track baby,
I was born to survive.
No matter black, white or beige
Chola or orient made,
I'm on the right track baby,
I was born to be brave.

Ray told me the other day that a lady asked him at his work if we ever worry that Arina will know she's different. I wished I had been there when she asked that!
Different than who??

Different than the kid with green eyes? Different than the kid that has a hard time with math, or can't yet ride a bike? Different than the boy next door that is unusually tall for his age, or the girl that is a little overweight?

Arina is different, because she is Arina!
Why do people insist that we should all be the same? No two people are alike. If we were all the same, the world would be a pretty boring place! I wouldn't want to be exactly like every person on my street. The world would be like groundhogs day everyday!

We will just continue to spread awareness that being different is not a bad thing. And in reality, no two people are exactly alike!!

*and seriously, if anyone knows why my font randomly changes, I'd love to know how to fix it!

Sunday, June 17, 2012

Home sweet home

*This picture is from Disneyland a couple weeks ago.
Jaxson is home! He came home yesterday. Thursday before his surgery he was gagging and retching like crazy! His bicarb has been super low, and we've had to increase it to an exorbitant amount to keep his level stable. Friday night the retching finally stopped and his lab Saturday morning was ok, so home we came.

I love our ENT, but we are going to have to have a nice long chat at our follow up. His tracheal malaysia is moderate, which I already knew. She wants to do a big airway surgery, where they take cartilidge from ribs and fix the airway. Then she wants to decannulate him!

I love her zest, but she is getting way to gung ho! His airway is NOT why we trached Jax, his lungs are. Bipap and cpap do not work for him. He actually desatted more on the bipap than regular oxygen. But his PH was getting really bad, and that is why we trached him. Fixing his airway is not going to help this problem.

I've just emailed his neuro because I'm still concerned that his diet ratio is too high. His color is absolutely horrid. His face and lips are grey. I keep checking his sats to make sure he is ok. The are not horrible, but he looks horrible. His lips and secretions are really dry, even though we upped his water by 200 cc's! I think he is still too ketotic. I'm just praying we don't have to re-admit him to fix this problem!

I'm trying to decide if I want to go strictly to facebook. Blog traffic has been really low, so I wonder if its worth being in two places at once!
I'm not sure if I can do that though. So many people have emailed me, finding Jax blog through googling PICU, or other key words. I hate to take this resource away! We'll do some heavy duty thinking about it this week!

Thursday, June 14, 2012

A heart stopper!

I think today I had one of the most heartstopping moments in the six years of life in the medically fragile world. The ENT came out to chat, and her pager went off. she said they were calling her back up, as she was running out the door! She left me with my heart racing and my jaw on the floor! I think I went a full two minutes without taking a breath! She came back in and said it wasn't Jax, they were just letting her know that her next case was ready!
Seriously, you can't do that to a momma!
Jax is sporting new ear tubes, and is sleeping in his PICU bed. We will be restarting feeds and see how the retching plays out. Hoping for a quiet night!


Jaxson could sure use your prayers right now. He's been retching all morning, and the doc wouldn't give him zofran because he's NPO for surgery. Even though aspirating during anesthesia is very high if already gagging. So he just went back to the OR with NO access, retching with no zofran on board. For a medically fragile child this is a recipe for disaster! Waiting impatiently in the waiting room and I'll update when I hear anything! Thank you friends!

Wednesday, June 13, 2012

Moving along

Last night was really long! Sleep is always a fight in the hospital, but for some reason Jax is really off schedule. He didn't take a nap and fell asleep at 7. Then he was up at 9! He retched a few times, which has me worried as the all fat diet can be rough on the tummy. Lab came in at 4 and was unsuccessful at getting blood. They came back at 6 and still got nothing.
We start full ketocal at 10, so cross everything that he tolerates it ok, and goes into ketosis without a scary drop in blood sugar! Tomorrow we hit the OR for some airway stuff.
I'm hoping Jax takes a nap today so I can join him!
He doesn't take a nap but sleeps through a treatment that blows air into his lungs! Silly boy!

Monday, June 11, 2012

Me and Jax are getting all snuggled into our PICU bed. That's right, never a dull moment around here. Luckily it was a planned admission, and the keto diet is being started slowly while we speak. I'm a little bugged because I noticed a sign that said no outside food, and I brought me some snacks. How am I supposed to sit in a room all day with no drink or snacks? This room is a little different than last time, and I can't hide behind his monitor! Dang, I guess I'll have to get a big, bulky sweatshirt on to hide my treats!

As much as I'm glad to be away from our old hospital, I'm really missing our nurses and staff. some have known Jax since birth! It's hard to not only be alone, but not have your old nurses and everyone stopping by to chat. Just makes it a little more lonely. And it's always really nice when the nurses know your son! They will eventually know him really well here too, but in the meantime, since I don't yet feel comfortable leaving him, I'm going to put on Dance Moms and sneak my snacks!

Saturday, June 9, 2012

Future pilot!

14 years ago today I became a mother for the first time! Mother to a beautiful baby boy that looked just like me!

I can't believe that next year I'm going to have a high schooler! Aaack!

Ray and I have been super excited for this birthday for months, back when we bought him his big gift.
Now you know Mondo is a huge military fan. The boy can tell you anything about World War 2, and he can tell you what any military vehicle, plane, or weapon is. I've known since he was a toddler that I was going to have a military son. It excites me and scares me to death at the same time!
So for his birthday we got him in to a flight simulator of an F16 fighter jet.
Lets just say he was in heaven!

Being briefed!

Getting set up

Double checking systems.

Ground control ready!

A near perfect take off,

with total concentration!

This place was amazing. It had a room with TV's so we could see his flight, and also hear them talking back and forth with ground control.
This first video is of him and what he see's. Sorry its super dark. The second video is in the viewing room of his near perfect landing. Mondo is 301 when you hear ground control talking.

He made it back in one piece

Congratulations on a great flight!

Happy Happy birthday to my first born, still my baby boy Mondo!!

Wednesday, June 6, 2012

Rockin the 3D glasses, ready to kick some Toy Story butt!!

Monday, June 4, 2012

Because I can be a deep thinker!

My brain is on overload tonight as I sit here and look at a picture of a sweet boy. A picture that looks eerily similar to many pictures of my own sweet boy.

That got me to thinking. First, let me give you a little history about myself so you understand why I think like this!

I have wanted to be a doctor since I could remember. When other girls were having pretend tea parties with their dolls, I was wrapping mine in ace bandages and giving them shots with my grandmothers old broaches. My mom's stroller was my ambulance, and it would often go barreling down the street to rescue people.
When I was 10 years old my dad bought me some med school textbooks he bought at a yard sale, knowing I would love them. I read those suckers from cover to cover...many times over! When I got into high school I thought it would be impossible for me to go to med school, my parents didn't have a lot of money, and I decided to be a paramedic instead. I signed up for the EMT class my senior year, but had to cancel it because I made the drill team. I decided I wanted to be a nurse after I had my first baby. I got my CNA, and got my dream job at the childrens hospital, but after Jaxson, I never did finish nursing school. My pediatrician told me many times I should go back to medical school. She could see my passion and my smarts for it. I told her she was nuts!
When I worked at the hospital congenital heart defects in children became my passion. I worked on the surgical unit, where all the heart kids came from PICU. Of course we had many other surgeries, but heart defects always fascinated me, and I studied up on it a lot at work.

Yesterday, after I read about another sweet DS baby getting extremely sick after going through his heart repair, it looked too familiar. I can count 7 children that I know of, only one is still living, that this happened to. The first one was Jax first girlfriend in the PICU. She spent 4 months with us there. She, like Jax, struggled with pulmonary hypertension and respiratory distress until her heart surgery. AV canal does that, I remember Jax always struggling while he was unrepaired. Here's the difference with her. About a month post op, she ended up back on life support. Her pulmonary hypertension sky high. No one knew why, no one knew how to help her. She eventually lost her battle with PH, and was our first experience with losing a friend. I didn't think much about it then, as we were new to Down syndrome and all these issues. But now many other children have suffered the same fate. Had their hearts repaired, only to have their PH get worse, the child needing life support and sometimes ecmo, the docs not knowing why, and then losing their battle.

Because this is my passion, and I can be a deep thinker when it comes to this, I am wondering if totally repairing an AV canal in some kids is actually a bad thing. Of course all kids are different, and there is no way to know which kids it affects, but it seems to be kids that had PH at birth, not ones that developed it later. Jax had a residual VSD when his repair was done, and I'm wondering if this actually helped him.

I'm going out on a limb here, but I wonder if his high right heart pressures being able to relieve themselves a bit by going through the VSD, helped. I'm still thinking this through, but I'm wondering if there needs to be some studies done, because I'm tired of seeing children have their hearts repaired, seem to be doing great, and then tank and usually die, for seemingly unknown respiratory failure.

I know, now you think I'm nuts!
Maybe its because I can't stand the unknown in the medical world. I have to find a cause for everything.
Or maybe, just maybe, its because I'm tired of seeing these poor mothers have to go through this with their sweet babies!!

Friday, June 1, 2012

The good, the bad, and the eye poking!

Things are really mixed with Jax right now.

He had a cardiology appointment a couple weeks ago. He did amazing! His heart looks fantastic! (for him) so good in fact that she is considering weaning his amlodipine. She wanted to think it over, because with him being so fragile, she doesn't want to rock the boat when he's doing so well. I haven't heard from her yet, so I'm wondering if she's decided not to try yet. We both contribute sea level to the big change. The only thing we have to watch is his VSD for signs that he is shunting a lot of blood. When his PH is high, it keeps the blood from shunting through the VSD. But with his PH doing well, he left heart will push blood through that hole into the right side.
Of course his heart and lungs doing so good is fantastic, since this is the biggest worry with him.

But neurologically, he isn't doing so hot.
I'm really praying that when we restart the diet on June 11, that a big change will happen. His neuro even told me its highly possible that his episodes are in fact seizures, but they are so deep in his brain that they don't show up on EEG. EEG's only read the surface of the brain.
But its not just the seizures, he's having other neurological changes.
The biggest thing, he is sticking his finger in his eye!

Its gotten so bad that he is starting to get a sore under his eye from his finger. The only thing I can do is put a no no on his arm. But that will just make him mad, and to me that is much worse. I can't explain or reason with him, because he can't comprehend any of it.
But this dang finger is in his eye 24/7!

Another thing is he goes into these fits that kind of look like he's having med withdrawls. It could even be looked at as a seizure. He freaks out, kicking his feet and waving his arms. He frantically grabs at his feeding extensions, and I've figured out that its Jax, and not faulty extensions like I originally thought was the problem!

See, his med port has been popping open for the last couple months. In the 6 years that we've had his tube, I've never had this problem. Another problem is his tubing from the feeding bag is getting pulled right out of the end that fits into his extensions! I was thinking a bad batch of feeding bags as well, until I saw him pulling and pulling on his tubes!
Again, the only thing that will help is a no no, but I wont put him through that. I just hope that restarting the diet will calm his little brain down a little bit, and we will all be happier campers!

*I've met some new friends in the last couple months, but been unable to add the blogs to my blogroll because of blogger issues! If you are a new follower, or I don't have your blog, please comment me you blog so we can add you!