The longest 10+ minutes in my life.... I thought I lost you forever!

Dear Laynson, I am so grateful to be still able to hold you in my arms.... you were gone.... lifeless for over 10 minutes.... I was bagging you and praying in my heart... God... please give my baby back to me.... Please and as I was bagging,  I was screaming.... Laynson, you can't do this to me... you can't leave me, you have to come back to mama... Laynson... you need to come back....  Friday, 1/24/2013.... a little past midnight... my heart stopped for as long as you were gone. :(

Please do not do this to me.... I love you and I need you.  You have to promise to never leave me, I have to watch you grow up, go to school, I have to yell at you to do your homework...  I have to see you get married, I have to see you do the impossible, like we always do.  Please... Laynson.... you need to quit doing this.

So.... this is all how it began.... I just got home from Landon's funeral on Thursday night, was tired as I flew home from another city and went straight to the funeral. As I got home, Laynson just got up as he was upset, it was about 9.30pm. He started fussing and turned blue, I ran and help my mom and the nurse and we managed to bag him, just another one of our regular episodes. When my mom played back the video, mom saw that Laynson was sitting on his high chair, watching his tv and at that time, his trach was out already. The nurse did not realize that. He started coughing, I guess he realized that his trach isn't in and was starting to get mad cos the feeling is different. The nurse quickly picked him up and yelled for me. I ran out and saw him turning blue, quickly got our ambu bag and bagged him. I realize that the feeling is different, I asked her, is the trach in? She looked and said oh no, it's out. I quickly switched out and started bagging him with the mask. She tried to cover the hole but it doesn't seem to be working. I quickly reached for my b tank, where my other ambu bag is and started bagging him. It was then I realized he wasn't coming up. I reached out to the phone to call 911 while my nurse starting giving him CPR through the mouth. I had to pass the phone to someone else because the 911 operator was just driving me nuts. I yelled at him because he was asking too many, saying like you said your son has a trach, where is the trach, etc... I got so mad, I said just send the damn ambulance here! I kept on bagging him while my nurse is doing chest compression. As I bagged him, I was screaming, Laynson, you cannot do this to me, you need to come back, you cannot leave mama  

Paramedics finally came, too calm, asking questions again while taking over my bagging. Told me, it's ok, we are ok because the machine finally picked up some readings... his pulse sox machine says 40s-50s oxygen. That's when I said, we've got to put the trach in (Which I know that is my biggest mistake, I should have done that before but my protocol was always to bring him back up and then put the trach on). They told me to step aside and be calm, we are ok.... I said we are NOT ok.... our oxygen is at 40s-50s.... finally, they put the trach back in and managed to bag him and brought him back up to 100. Laynsons eyes finally open but he was not responding, he looks straight through my eyes.... he was soft, like in a vegetable state. And during this whole time, my mom kept on saying... oh no... it's too long, he's gone for too long, I think this has made me conclude that even though Laynson is up, he has brain damage. We quickly went up the ambulance, I kept on calling him and he wouldn't respond to me, his eyes are open then but later just shut. I move him and called him many times, he just wouldn't wake up at all anymore  I had a zillion things that ran through my mind.... when I kept calling you and you wouldn't wake up.... I was thinking, am I going to be asked if to turn off life support for you as you will never wake up.... I asked God, why must he take you away.... I was scared.... I really was.... I cannot lose you. 

Finally in the ER, they were trying to get an IV in, he moved slowly and later started fighting. It took them close to 20 pokes to finally get 1 IV in. We were later then moved to the PICU for observation. 

You woke up the next morning, not wanting to do much.  I was afraid you would do the things you do anymore, I asked for kisses and you were reluctant, you took a step back... I was sad.  But you started warming up and stood up on the crib.  You looked at mama and mama asked for a High Five and you gave mama one, a slow one and soft one, not like your usual but you did it.  I was so happy, I said to the RT.... my baby remembers his HIGH FIVE....

After a while, you just started your usual.... you did your Kung Fu Panda moves... trying to escape your crib.... Mama calls it The great escape....

After that, you were wanting to eat, etc... I am so happy, I've got you back.  It makes me think about how we feel comfortable about what you have but in a split second, you can snap and be gone.  Lovely boy, mama loves you a lot, please do not do anything like this EVER.... I told Dr Copenhaver, mama needs a cardiac pacer really soon because mama's heart stops each time you do funny things :)

I love you sweet baby boy!  Thank you God for giving you back to me, it makes me feel so happy and thanking him each day for you!

1st year home..... YAY.... we did it! Happy 1st Anniversary!

I still remember being so anxious that morning.  It was THE DAY!!!! The day where I was supposed to carry you home, bring you home in a baby carrier, in your "going home" outfit.  Of course, that didn't happen, when we left the hospital, you were 5 months and 2 days old instead of 4 days old, mama still bought you a cute little outfit because it was a special day.  Yes, typically, I expect to bring home a little baby that wears a newborn size diaper but nope... mama brought home a BIG baby.  Mama's baby wears a size 3 diaper, same as your middle brother who is 2+ years old and guess what?  Mama definitely did not expect to bring home a baby that has teeth!  Yes, you do have teeth when you got home.  

FAST FORWARD...... 1 year later....

I am so proud of you, yes, we have scary moments, like having to call 911 exactly a week after we got home because you decided to quit breathing on us for over a minute.  Miss Yemi (our favorite night nurse) was talking to mama, we were looking back at a year ago, she said, if we just need to bag 3 times that shift, it was a GREAT night.  We go anywhere from 15 to over 20 times sometimes.  Yes my dear, that's why we are losing nurses because we do not resuscitate babies like that.  Anyway, yes, we have our ups and down but I am so proud of you.  Today, being exactly a year after we came home, you are walking, not a whole lot but quite a bit of steps. 

Look at how much you have grown?  Mama is very happy and proud of you little Laynson.

Btw, this shirt belongs to Uncle Lionel, so, this shirt is approximately 25 years old. 

Yay!!! We've got back our nursing hours.

So, ever since I saw the letter stating that your nursing hours will be cut from 168/ week to 112/week, mama has been stressing.  Yes, how would I manage?  It's not easy at all, even with 24 hours care, I am already like a cartoon running around going after your 2 older brother's activities plus work and business.  There isn't a day I go down without feeling like I am still not done with everything.

Mama was so nervous, mama called in on 9/6 at 10 am and mama invited Ms Sharon to be on the phone be with us if in case there is anything that mama cannot understand, at least Ms Sharon will be able to help us.  When we first started, the moderator said, we have decided this morning that we will resume all hours.

Thank you so much to Dr Gelfand and Dr Jenelle Wong for their letter.  I guess mama now learn another new thing in life!!! You are such an amazing mama, you teach mama so many things, now mama knows the system to fight Medicaid too.  :)  Happy happy... mama did the happy dance today.

Ohh... and Miss Cassandra is back, finally :)

Sitting down here at working, thinking about the day I read about CCHS, not knowing that one day, I would have a CCHS baby.

I have been traveling to work every other week now.  It's nice that I still have my 24 hours nursing but looks like they want to cut it down and when that happens, I am not sure how it will affect me.

Sitting down here, I have been thinking about the day where I was reading about this boy in UK.. apparently he fears to go to sleep because without support when he sleeps, he will not get up.  Little did I know that almost 2 years later, I have that problem.

Life is just full of surprises, sometimes, you may have already come across something but at that moment, it's just something that you glance through but when it hits you, then you remember... ahh... I read about this years ago. 

 

 

I'm tired.... thinking that I need to prepare stuff to fight with Medicaid to get my nursing hours.  Just not the thing that I feel like doing.  

I am currently reading Life without Limits, Nick said that everybody serves a purpose and when you talk to people, they will tell you that God is polishing me and wanting to equip me with things for future.  At a moment, I thought God wanted me to change career, but looks like... he wanted me to learn to be a schedule, a nurse, a pulmonologist and now an attorney?  Hmm.... well, I'll go now, whatever his plans are, I am sure I will be able to do it as I will fight for my little one.

 

We made it to NEW YORK... like the song... if we can make it in NEW YORK, we can make it ANYWHERE!

A year ago, on 6/22/2012, I was told that Laynson has CCHS, on 6/23/2012, we talked to our Pulm and it sounded like as if we will have a tough life ahead, as if it will be difficult leaving Dallas, TX where we live. I am so proud of Laynson, he is so strong and fights for everything, a year late, we are at NYC. This picture means a lot to me and Laynson. I want to show and tell him that I am so proud of him, and that this picture was taken with the statue of Liberty with us, telling him like the meaning of the statue, freedom.... 

Even though we have CCHS, that doesn't mean that we are stuck, we are free to do whatever we want as long as we have determination. We also managed to see one of the wonder of the world, Niagara Falls. Yesterday was exactly a year we had the trach, also the first time I met an angel Shelley . I want to thank all of my CCHS family for always being there for us, answering my questions and suggesting stuff to help Laynson. Without you guys, I wouldn't be able to take a picture, I cried inside as I was laughing with joy, it's like the song, IF I can make it in NY, I can make it anywhere is how I felt, my favorite Frank Sinatra song.

What is it like to raise a special needs child?

Some people has asked me, what is it like to raise a child with special needs?  I didn't know how to answer that question, not until I read an article.

There are a lot of moms out there, a lot of you know what you are going into, having a baby, expect sleepless nights, expect having to deal with crying and whinny baby, expect them to eat solid, expect them to sleep through the night at 4 months, expect them to crawl, then walk but for some of us... we were the same way, we expect to have our baby at full term, for the moms who has more than 1 kid, it's a "been there, done that" deal.  But sometimes, for some of us, you expect to "been there, done that" but without a warning, you've been thrown to a situation where you have never know exist.  When you were pregnant, you were never expecting to have to put your baby on a machine to help him breathe, never expect to see a hole in your baby's throat, never expect that your baby has to eat through tubes, never expect that your baby will never move except for their eyes looking at your, for me, the worst is that I never expect that I have to resuscitate my baby everyday to keep him living.

Some of us refuse to accept the fact, in fact, I myself had a tough time, trying to accept the fact, I hide behind the closet for several months, having to be on anti depression just to get up in the mornings to go to the hospital to see my baby, yet having to deal with 2 other kids at home and then, I was still working from home and dealing with my side business.  I still remember, one day, I really went into my closet, shut off all my lights and started crying and crying for over an hour because, that's where I felt like I was then... in the dark, crying and nobody to help me, asking WHY ME?

Months later, I slowly came out of the dark and realize that life has to go on.  But, when people ask me, what is it like to raise a child with special needs, I really didn't know how to answer them until I read the poem below.  It inspired me and I know that I deal with the mommy and babies business, for those mom who has to go through what I am, as well as those who just started going through and having deal with things that they totally didn't know that if they could or not, please read the poem below and WELCOME TO HOLLAND!

For me... I've been to Italy (2 Healthy Boys) and expected to go to Italy again but ended up in Holland the last time but I love Holland and Holland is where we shall stay, if you don't know what I am talking about, please, you have to read the article below and here is my BEAUTIFUL HOLLAND!

And here is Laynson, REACHING FOR A CURE someday so that not another baby and mommy have to go through what we went through!  CCHS.

Please note that this is not written by me, a mom actually shared this:

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…

When you’re going to have a baby, it’...s like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!” you say. “What do you mean, Holland?” I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.”

The pain of that will never, ever, go away, because the loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

Written by Emily Perl Kingsley

I can't believe what I just read! I don't know you anymore!

Laynson, this is not about you, this is about me.  I am very, very upset.  I never believe that I would read this.  Someone who promised to care for us, and that would walk every step of the way with us doesn't appear.  It is so easy to just say that I will walk with you and then disappear.  I don't want to say who it is but I am sure the person knows.

I am so sad, growing up, I care so much about everyone, I don't know why I am the one chosen to have to suffer all this that you have been going through, I don't know why you are picked as well.  Occassionally I quit asking but I haven't.

So, today, I read something that broke my heart into pieces.  I wouldn't believe it and that after this, I think I know where we all stand and let's just not have anything much to do with each other since money is more important.  When your life is perfect, all you care about is YOURSELF! 

Thanks for showing me who you are and I will remember this day for the rest of my life.  Though, I will tell you something and that if anything happens to you, I will still be there for you, because I have a heart, I am a human, even a stranger that I don't know, I would give them gifts, like Sara's Smile, I don't know her family but after reading about her family, and that her dad lost a job and she wouldn't have birthday gifts, I made sure that I sent her something.  I will do the same for you but know that where you stand in my heart now!

Disappointed Laura!