YAY..... we got the green light.... we are heading home on 10/2/2012.

Initially, I was told that 10/02/2012 is the date that we will be discharged... ok... slap slap, is that even true"  IS that even happening?  You're coming home????  Ok, I don't believe it.

So, I talked to Whitney the care coordinator, I told her that since it was a little sudden, my husband already purchased an airport to go home on Monday night but this is a very big day for me, I need him to be here for me when Laynson discharged...

So, she said she will think about it.

PRAYING!!!!!!

What a wonderful day and news.... I can see the light... the end of the tunnel is soon to come!

Mama thought today is just a regular Monday, busy with catching up from last week, etc.  As usual, Dada works from home on Monday, after his conference calls in the morning, I asked him to check on you.  After that, it was mama's turn to call Whitney, your Care Coordinator. 

The last time we had the care conference, Dr Gelfand said that the only thing that will most likely hold us up is the 24/7 nursing care.  Though, Whitne is again not working on Monday, and she wasn't on Friday.  I tried calling Michelle and she didn't pick up the phone as well :(  Sigh....  I guess we'll just have to wait but the again, mama didn't want to wait.

First, mama called Epic, that who we are going for nurses.... if Brandy picks that I am sure it's the best one.  Mama talkedto Marco, he said that we will be able to set something up on Wednesday at 3pm.  GREAT!!! All for it.  Then, mama finally got a hold of Michelle, she pulled your file and said that everything seems to look good including home nursing, we are shooting for Oct 2nd.  In my heart.... REALLY?  Am I dreaming, is it true?  She told me to contact the DME company, which will be Apple.  Of course mama immediately call them and Jamie picked up the phone and started arranging stuff with mama.  She is EFFICIENT.  She said, let's meet at 4.15pm.  I said we're all set.

On our way, I've got another call from Cheryl and she's with the MDCP program, Medically Dependent Children's Program.  She explained to me that the only thing that would make him get help immediately is if he stays in a nursing home or too sick to be in a nursing home but still have to stay for a day or best of all, can't go.  We'll see what Dr Gelfand says.  I am glad that today.... God has arranged for everything to move so quickly.  He moves mountains!!!!!

Of course, mama is always scrambling for time... got there a few mins late because mama got lost in downtown.  Got there and we started talking... ok... maybe your diapers and formula will be covered as well?  I was thinking in my heart, yes, God knew that I just wanted 2 kids but he gave me 3.  He took some income away from me but he made sure he made up for it.  Praise the lord....

Anyway, guess what.... she will bring your vent, etcs on Wednesday at 9.30am...YAHOO.... love it!

We spent the rest of the evening bathing you, feeding you and of course, it's Monday Night Football.... yay... so, you were watching it with Tai Gor :)

You love hanging out with big brother... soon when you are home, you get to hang out everyday :)

Well... the time has come, dada needs to leave to the airport, we had such wonderful news, we'll keep this up this week :)

Good night sweet baby boy!

Laynden's CPR class as 3rd Care Taker

Ok, besides trach change, trach care... we needed to do CPR class as well.

Check it out... Laynden performing that as well....

Step 1:
Check if baby is OK..
Laynden: ARE YOU OK, ARE YOU OK???  Ok... in the real CPR world, you don't ask the infant that but since Laynden is a baby, they speak baby languages... so, it's the right step....

Step 2: 
Start performing CPR , ok, he did it too fast, no shots for this.

Step 3: 
Start giving him breathes... blow through the mouth....

Laynden (Yee Gor) signed up for 3rd Care Taker

Ok, so, we are supposed to have 2 care takers signed off here at Our Children's House of Baylor... Of course mama would be the first, second is poh poh and guess who decided to be the 3rd?  Your second brother... here he is, learning how about trachs and how to do trach change and trach care...

Trach Change #1 by Laynden Lim - Care Taker 3 for Laynson

Step 1: Unhook the ties

 

Step 2: Clean with wash cloth

 

 

Step 3:  Take old trach out, replace with new and put trach ties back together.

 

 



 Step 4:  Check to ensure trach ties are in tact and baby is ok...

Ok... here is what Laynden's got to say to grand mama... "Poh Poh... it was a piece of cake, I have no clue why you would be scare and scramble???".... LOL...

Your brothers are hillarious, I am sure you will have fun playing with them.

The Chan Family... THANK YOU!!!!

Dearest Helen and Ken, thank you so much for bringing Laynce out again, you guys are so thoughtful and helpful.  Laynce had such a great time and thanks for getting Laynden and Laynson their gifts as well...

Thank you Aunt Helen, another special Angel in your life for such a cute turtle :)

VERY FURIOUS!!!! He DOESN'T have 3 Heads!!!! Come on people!

Ok, I have been preparing myself to deal with dirty looks, deal with "friends" who keep telling me that they are sorry but all they want to know is what is going on so that they can gossip.  Only 1-2 friends who I have just met a few times were the ones that stood up and did something, rather that telling me that they are sorry but in fact... it's just a manners.

Anyway... gosh, after I got in that night, got in around 2am the charge nurse came to me, told me that we almost sent your son back to Childrens.  GRRRRRRRrrrrrrrrrrrrrr................  WHATTT............. did you know that I was supposed to move back in June and I just now got to move in September? 

Came to find out that I have a drama queen nurse.  I didn't know that until I was sleeping there in the morning and I heard her whispering to the tech.... "I was so scared... you should see how her turned blue" is what she told her.  Then a few minutes later... she starting screaming.... MOM... MOM... he's doing it again... I ran over there... crank your Os to 100% and started giving you some manual breath, I turned and look at you again... gosh,.... you were NOT starting your episode.... you were just having a small desat.  I am so upset with the nurse.  I later talked to the RT and was told that you threw 13 spells within a few hours and that's why they wanted to send you back because they bagged you multiple times :(

They put an IV in you as well... sigh... from then on, you were the talk of the floor and people looked at you as if you have 3 heads :(  I am so upset, I just want to bring you home.  I don't need this people who talks about how you turn blue... what should I do?  Sigh....

Our last day at Children's and off we go to Our Children's house... last stop before HOME!

To a lot of people including myself, September 11th 11 years ago has been a scary and sad day.  Still remember I was on my way to Lisa Smith's house to help her out with her party and I still remember, it was very early, 7+ am CST and I heard the news on AM 1080 that a plane has hit the world trade center.  I told Lisa that some idiot didn't know how to drive the plane and hit the world trade center.  Little did I know, she came back after buying groceries and told me that Laura, it's a terrorist  attack.

11 years later, it's a GREAT day for me.  September 11, 4.5 months later, we finally got to move to Our Children's house of Baylor.  I made sure the night before, I left quietly as I didn't want you to know that we are leaving, if not, you will start creating episodes to make your self stay in the hospital.  Mama got there and started playing with you....

Then... mama put on a shirt for you after the RT was done with your treatment.  Veronica your RT then wanted to make sure that you are all done with your treatment so that you can settle down

 

Here is your RT, just finishing up your treatments:

 

Ohh baby... did you see the stretcher at the back... shh... mama was getting excited because mama didn't know if they were here for you but they were!!!!

Ok.... Our Children's House of Baylor... get ready... get out of the way.... Laynson is on his way :)

Yes... you were still happily playing with gong gong... didn't know that it is coming :)

Ohh no mama... what is this.... why are they putting me in this thing, I don't like this.... I don't like to be strapped down...

Help.... mama.... help.... I like the downtown view from my loft.... I don't want to go....

Hmm.... maybe, its not so bad after all....

So, off you went with grandpapa on the ambulance while mama drove the car, unfortunately, the ambulance had to come back to the parking because mama left her keys with grandpapa.

Ok... it isn't easy even with the GPS directions... mama got lost but yet... mama made it before you did.  Ok... shh... came to find out from gong gong, the ambulance got lost as well... they claim that they knew the way, it was just the constructions that caused the detour :)

So... mama snapped a picture of your new place before you got here.  According to them, there is only 3 private rooms, others are shared and we got one of them.  Thanks to Dr Gelfand, I am sure he has made sure we have a nice and private space :)

Ok... you finally made it here 20 mins after mama did.....

I was told that you LOVED the ambulance ride.... see baby... you need to stop planning and expanding your stay in the hospital, there are a lot of beautiful stay out there and you need to LEAVE!!!

 

Mama... what is this place?  I pray that it is not scary.... "Praying".....

Ok... I like this place after all.... it isn't too bad :)

I am hungry now mama... but I am a big boy, I am going to learn to hold the bottle while you are here to learn to care for me.

Good bye sweet baby boy.... mama will come later to see you as mama needed to go to your brother's school to pick them up....

Another scary episode... you were gone for probably 1/2 min.

Since we didn't go there early on Sat night, I told dada that we needed to stay overnight to spend more time with you.  We arrived there after a big buffet... yes, mama need to go on diet badly because mama added 4 lbs instead of losing and yes... it is very rare that gong gong spends us dinner, so, it was a blue moon for us :P 

The tau geh... who paid:

As soon as mama came, mama got to feed you...look at us :)

Anyway.... at about 7am, Amber, our favorite C7 night nurse came and tapped at mama's feet, mama was furious thinking that it's dada but when I saw Amber, I asked her what's going on, she just was wondering if I want to feed him, since I was tired, I asked her if she could help me.  She said yes and I was too tired and continued to sleep. 

Then... suddenly I heard Amber running to the door and saying... "I NEED HELP"... CODE, and suddenly, it felt like more than 10 people were in the room, Amber was yelling Laynson, Laynson.... I knew that this is very bad.  :(  Then... after a few seconds, she said, he's back up, he's back up and from the floor, I finally saw your little hands moving.  2 doctors, a few RTs, a few nurses, I think virtually the whole C7 people that were available ran into your room and there were some that were outside.  Dr Sam came to quickly talk to us as he could see that our face were just stunt... of course.

Amber was explaining to all what had happened and it seems like this is a regular episode but you just didn't come out of it like you normally do but immediatelly after she bagged you, you came back on.  When we had the chance to talk to her, she indirectly told me that you were dead for a good 20-30 seconds.  They were ready to do heart compression, they had the machines whereby we only see on TV but not on my own son :(  Amber said that if this happens at home, while we bag you, we need to call 911 and need them to be on the way to make sure that everything's ok.  So... in other words, you were probably dead for a good 20-30 seconds since you had 0 O2 and no heart beat. 

I am not sure how many of this episodes we have to deal with but I know that when I found out that you have CCHS, that's what we were signed up for.... PICU, ER visits are going to be more than vacations... that's our "normal" life to be. 

Yes, if you ask me, it's scary but what can we do?  I know you didn't mean it to and you cannot control it, it is just part of you now. 

Anyway, look at this picture, this was taken an hour after your episode, you gave mama a big big smile... and yes, the tubes were taken off so that they could put in another tube directly to your intestine as Dr Gelfand thinks that it's your reflux that is causing you to be so mad... yet another experiment.  You were mad the whole day after that without your favorite bottle.  You are so smart now that you know that the pacifier isn't the same as your bottle :) 

Here you are with your sweet smile... little sweetheart :)

Ok, I have no clue how you can always end up like gone a minute ago and then smile like that the next??? Hmm....

Dear baby boy, you need to stop throwing these scary episodes... now Dr Gelfand wants to do a PH probe to see if your reflux is causing all these things.... sigh....

Back to tube in the nose honey...

Your beautiful room is awaiting for you....

Dearest baby boy.... mama spent a lot of time redoing the formal dining so that you will have a room that looks and feel like a nursery, like other babies.  Babies should be placed a cute nursery, not rooms that is filled with equipments, oxygens and santizer smelling stuff....

So.... check it out... your room is ready and awaiting for you :)