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!

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.

Haddad Syndrome.. What??? Another term?

As I was surfing the Facebook CCHS page, I saw a mom from Korea posted on the CCHS stating that her son has the Haddad Syndrome.  I begin to wonder, what is that... so, I posted a question to the group, asking them... if my son has CCHS and has Hirschsprungs, does that mean he has the Haddad Syndrome?  Ok... another term thrown at mama and another Syndrome???  I don't like it.

After reading an article posted by them, I think that's what he has.  Since he has CCHS and Hirschsprungs, he has the Haddad Syndrome.

Look at you, looking so cute Mr...

Anyway, mama bath you and put on a cute shirt on you, after that, mama wrapped you up afraid that you were cold but I guess it made you too hot?

You got up and you were sweating.  Your temp went up to 99.7 :(  Sorry...  Mama had to change another shirt for you.

Now... you are wide awake! :)

 

 Again... your ipad King brothers....

God still loves mama even though he gave you CCHS

Do you know why I say that God still loves me even though it seems like he hates me by giving me such a hard time and giving you CCHS?  End of May, Dr Jenelle Wong called and dada answered the phone.  She told him about another CCHS patient and was telling him about the blog that the other mama wrote.  Of course then, mama refused to have anything to do with it.

Yes, after yesterday, mama know that mama have no choice but to quickly contact the other mom with CCHS.  Do you know how powerful God is?  Let me tell you the story and how it's all connected.  Do you remember, on July 5th, your second brother had strep throat and I had to go see Dr Wong.  When I was at Dr Wong's office, she gave me a letter written by the mom to me, the weird thing is, the email was sent out on July 4th and God arranged for me to go to Dr Wong's office on July 5th, the next day.  Yes, I refused to do anything about it up until early this morning because I decided that I cannot run away from the fact.  You have CCHS and I cannot hide and I have to act on it fast.  The longer I hide, the longer it is to find out about how to take care of you.  I needed to know if you were going to survive, if you were going to grow up and see mama and dada grow old :(

So, I replied to the email and I searched Shelley Colquitt's name on facebook.  I immediately did a friend request.  Early this morning, I was supposed to send dada to the airport but I was too tired, exhausted because of all the news so, gong gong ended up fetching dada to the airport.  At about 7.40am, the phone rang... gosh, I got scared... thank goodness, it is not the hospital.  It's Shelley!!!

I was so grateful, she called me and talked to me for over an hour.  She talked about what she had to go through, when the Phox2B test was finally available, etc and also added me on the CCHS closed group.  Finally, I asked her... how did she manage to get to talk to Dr Wong. 

Here is the story....

She told me that for 3 years, she has never seen any other pediatric other than Dr Goebel.  End of May, Zoey has ear infection and Shelley had to call Dr Goebel's office but unfortunately, he was out on vacation.  Shelley was telling me that she was not excited at all, afraid that she had to explain to this new doctor all about Zoey's CCHS deal, etc.  Of all the doctors, Dr Wong was available and was the one seeing them.  She said that as soon as Dr Wong walked in, Dr Wong said to her, I am excited to see you guys.  She's like... "great!!!"... then Dr Wong said, there is a baby that was just recently born that most likely has this disease.  That's when she talked to Dr Wong and told Dr Wong that she will try to contact us. 

Can you believe it????  How many pediatric offices are there in Dallas?  Of all the pediatric offices... we share the same one.  Do you believe it that God actually has arranged everything for me, I was sent here to US, if I were to have you in Malaysia, I don't know how we can go through this.  We will probably end up in debts with medical fees.  So, that's already a blessing.  Then... God sent an Angel to me.... he sent Miss Shelley to me... explaining everything to mama... 

God still love mama... God still loves you....

GOD STILL LOVE US!

Phox2B test - Genetic testing for CCHS

Like Dr Venkat said, he thinks you have CCHS, so, we were told to do the Phox2b test.  Still then, I had no clue what the CCHS is.  Honestly, I have been doing so good at doing research for everything but I refused to google much on your issue because I am so scared... I am scared that I would find something that I do not want you to have and worst of all, I was afraid that I would find out that you will not make it!  It's just so sad...

Yes... I was living in DENIAL, I do not want to know, I want you to just grow out of it and that you are stronger now...

I asked what is the test about, they just told me that it's basically drawing some blood and it will be sent to an outside lab but it would take 10-15 days to get the test results.

Dr Venkat thinks that he seems to think that even if he has this, you will be a mild case, looking at your condition.

That day, Miss Nicole, yes, she's another one of our favorite nurse was the one that did the blood work.  She share something special with us, which is the love for Bulldogs.  That's why we click.  If you are reading Miss Nicole, thank you for taking good care of our sweet baby boy.