3rd time changing the trach - SUCCESS!

Third time's a charm.... yay... a successful trach change...  So, the same routine, bath time, then, it was time to change the trach.

So, I've got everything prepared, this time, I reminded Ah Yee to take a video. 

Ok.... so, after we put the trach back on, got everything done... your favorite night nurse, Miss Angela said.... "Except that we forgot the polymem silver".... great... Miss Angela, you should have said it earlier.  LOL... I guess she must see that mama is so tense, she didn't want to add on.

So, we had to take your trach tie out again and put the polymem silver.

After mama worn you out AGAIN, it was dinner time for you, so, mama fed you about 60 cc by bottle.  Then it was mama's turn to have dinner.  Ah Yee bought mama's favorite Char Kuey Teow from Secret Recipe.

To be continued......

My First Successful Tummy Time after having a trach

Well, I am so sorry little Laynson that it may seem like mama is torturing you.  I have to train you to be tough.  You are already 13 weeks old, I needed to make sure that you have better head control.  You've been sleeping so much on the back, you hardly get any tummy time and worst of all, having the trach, nobody really gives you tummy time at all.  That's why mama had to post on the CCHS group asking them how they did it.  Sarah Yang posted a picture of Madi for me.  Very thoughtful.

Anyway, I saw that and started looking for it and found another Lamaze tummy time item mat.  Sorry baby, it is not here yet, so, mama have to use the boppy pillow instead.

YAY... it works!
Mama.... are you trying to kill me?

You look so cute!!!! Like a little puppy :P

Mama.... I am started to get mad soon.... I am not kidding!

I am getting ready to get really mad.... I am turning blue....

Ok.... at the end, you got a little upset, thank goodness no blue spells today.  Good boy!

After that, dada called, so, mama took a screenshot of Dada using facetime with us...

And this is you... chilling out before passing out in the boppy on the floor with mama :)





Anal botox? Hmm... that's something that I have never heard of...

Mama came with koko to the NICU since gong gong said he will join us, so, after that, he can bring koko home.  Thank goodness everything came back normal, so, we don't have to wear the gowns today. 

As soon as I walked in, the attending doctor asked me, are you Ms Wan?  I said yes and she started telling me about your condition.  Said that we have changed the vent settings and it seems that your CO2 is in the 50s range.  Apparently, the pulmonologist, Dr Sanchez came to see you and said that if you are in this rate for 48 hours, they will accept you at Our Children's house but of course, that's pending GI's input. 

In addition to that, Dr Magason inserted a tube in your anal, apparently that tube is to help decompress some of the air from the intestine.  I think they are still not thinking that your case is like Landon's whereby there are chunks with cells and chunks without?  Anyway, yes.... the doctor was telling me about the anal botox, right away I was thinking about face botox and the doctor said yes, it's like a botox for face, basically for face, you tigthen up the skin on the face, therefore the anal is basically to tigthen up the intestine since they think that there are some loose intestine?  Hmm... interesting. She said they are not 100% sure for now but said that Dr Magason thinks that you are a candidate for this.

Ok, so, I did some googling and found this:

Procedure:

This procedure involves the injection of Botox into the internal sphincter muscle which will relax the area, promote blood flow to the area and reduce pain associated with an anal fissure. The procedure takes only a few minutes and involves having a rectal exam and injection of Botox into the internal sphincter muscle in one spot. There is no special preparation needed prior to this procedure so you can eat and drink as usual the day of the procedure and you do not need to do any bowel preparation. You will be awake for this procedure and will not be given any sedative or pain/numbing medication so you will be able to drive home after this. We do use topical or gel numbing in the area to make the injection less uncomfortable for you. The Botox may sting a little as it is injected but this sensation lasts for only a few minutes. The injection does not cause any cutting or damage to the muscle so you are not at risk for having any fecal incontinence/seepage. The Botox takes effect in approximately 72 hours, sometimes longer, and last for approximately 2 - 3 months.

Activity: There are no special restrictions after this procedure and it is best to continue with the same regimen you were on prior to this procedure and you will not need to take any time off of work.
Potential Side Effects:  
It is normal for your symptoms to slowly improve since the Botox injection isn’t effective immediately. BOTOX INJECTION ALONE IS NOT EFFECTIVE FOR ALL FISSURE PATIENTS. For those patients with anal fissures, it is normal to have pain/bleeding which should improve over the next 2 to 4 weeks.
 Ok.... that's not good if it only last for 2-3 months, if that's the case, for the rest of your life, do you need this all the time?

Here is what you had :(  I am very sure it's very uncomfortable... poor baby.

Anyway, you were a little more awake today, I guess it's because at that time, your CO2 were lower?  So mama took pictures with you.

 Mama was messing with you.... mama made your hair like yee ko, what you think?

Hmm... maybe not.... LOL

Mama was able to take some really cute pictures of you... finally you were a little awake to do some of this for mama.

Dada said you looked like you were thinking of plans to expand your stay in NICU.

Ok... thinking too hard till you were tired?

Ok.... maybe I'll think in my sleep

Koko left with gong gong while mama is sitting here.  You drank 65 cc for mama by bottle and you started to show like you were tired and slept.  Now... T com readings are about 60s to 70s now :(  Not good again.... sigh.  You just don't want mama to go I guess? 



Good days and bad days.... I feel defeated today :(

I always say that you dictate mama's day now.  Today, I just feel like a failure and defeated.  I am tired, I just didn't want to wake up this morning.  We were supposed to be heading to Our Children's House today but instead, when we called, we were talking to Dr Moore.  When a doctor is at the bedside instead of during rounds, you know he's not at his best. 
When we got here, they sent you down to do the barium enema.  They did an X-ray on the tummy and found some things in the intestine that they want to check.  Since mama told Ms Tammie the NP about Landon's (the other CCHS kid here in Dallas), about his partial intestine with cell and then again no cell and back to got cell, I guess she is now also thinking if you could possibly have that issue, so, that's why they sent you down.  Anyway.... we still don't know the results yet for now.

At about evening time, Latanya the nurse came and told us that we needed to wear the gown because they found some bacteria in the air on the trach?  Ok, I am still not getting it but anyways, I already suspect something isn't right.  I had to suction you so much yesterday and I can see that you are coughing.  Your secretions were yellowish, I just know can sense that you are not feeling well, again looking at you sleeping so much, I know right away you are just not feeling your best.

Mama is just tired of everything, 2 customers just got onto mama today.  One that stated that she is disappointed because I didn't have the color that she wanted, sorry but I just ran out of the color and another one wanted to return after the diapers being used.  Even if we go to Ross to purchase a pair of shoes and worn, they won't accept returns, I have been trying my very best to accommodate them even while going through this hardship with you.  It hasn't been getting on to me much lately, either the anti-depression is working OR I have changed after going through this times with you.  You changed my thoughts that I shouldn't be jumping on small issues, you are my priority now but today isn't a good day for me, it got to me :(

The NP said that they will talk to the GI doctor tomorrow after your barium results is out but Dr Magason the surgeon came and he said that he doesn't think that the lower part is the issue if that's the case after he checked.  So, we would know more tomorrow but dada won't be here, he will be going back to Phoenix tomrorow :(

Here is a picture of you sleeping again...

This is you, right before they pushed you down to do the barium enema

After you got back, you had a big blow out... the nurse had to clean everything including your sheets, so, Dada got to carry you while koko take the opportunity to give you love.

Here is some kisses from big brother.

Ok, I think dada's CO2 is high too because he seems to be sleeping a lot????

I feel like I am going through what we went through over again where your respiratory is not good, your tummy is giving issues.  I thought we were past that but I guess I was wrong.  That's why I feel like I've been defeated today.  I just don't want to get up at all to face the world.  Again today, I feel like I needed to hide in the closet and not come out.  I again ask myself, if I can do this and again why me?

NO GO.... not tomorrow. We will still be in NICU

Ok... am I surprised that tomorrow is a NO GO?  Of course not.  Yesterday when I saw that your CO2 is in the 80s.... I knew right away that Monday is a no go for us.  I keep telling people that as soon as you tell him we're moving, he will plan to prolong his stay here.  But... I am glad that at least whatever is happening is done here in the NICU then else where, especially not at home.

Shelley texted me this morning asking me how is he. I told her that gas was showing that his CO2 is 58.  OK... we don't like that number and she got mad, she said that the number is not good at all, which I totally agree.  She asked me, do you want to throw a fit or I do?  I said we'll go there together.  There has to be a vent setting change.  So, we went there and Tara was the NP, she kept telling us that he seems to be breathing good on his own and didn't need the RR.  I was wondering if that's correct and Shelley said something that straigthened up my thoughts.  If he doesn't need a RR, he doesn't have CCHS and what's the point of being trach?  Good point...

CJ and I came in and they were trying to give us reasons that his CO2 is still in an ok range, etc.  Then, Shelley came and we said we want to talk to the NP again.  Immediately the NP came in and to me, the NP seems very defensive, saying that Shelley was attacking her.  I don't see that at all because her intentions are just to make sure that Laynson is ok.  Anyway, she said that if we want to call Dr Gelfand or if we want her to give a rate, she can.  CJ said that all we want is to get him to a better state, we prefer him to be in the 20s rather than the 70s.  We can work up instead of having to slowly work down because it has been days that we are in this condition.  We just want to get Laynson well and make sure that he is ok.  Everytime we call, they will tell us that he's doing great, of course he is doing great, he is lerthargic, hardly moving, just sleeping all the time because he just couldn't move much.  According to Shelley, if you have high CO2, it will give you a headache and I totally believe that, if not, he would be up and kicking but he was just sleeping all the time.

We went out for dinner and just got back.  Renee is the NP, I think Tara just didn't want to deal with us, sorry, not that we have questions on your ability, please don't take it the wrong way, we just want the CO2 for Laynson to come down, it has to be because we dont' want him to have a seizure.  We have had that happen and we don't want that to happen and we heard of kids with CCHS having too high of a CO2 that caused them to go into coma.  We do not want to go that route at all.

Anyway, we came back from dinner and Renee was there and they just got done with an art stick.  His CO2 is now 39, YAY!!!! Now he looks more alert and kicking.  I think they now agree with me that maybe he's not feeling well?  They are doing a blood couture and giving him antibotics.  I swear his secretions are getting yellowish, that tells me that he's not doing too good.  His tummy seems a little firm these 2 days too and they are watching him.  I am glad that Shelley is always here to help, people may think she's creating a scene but to me, she is the sweetest person, an angel.  So, for those of you who thinks she doesn't have the rights to talk on behalf, you guys are wrong, she's his god mama, just like his mama and she's taking charge being his mama.  Though, as we are sitting here, the CO2 readings is still high, 52.1 :(  It's off by typically 1-2, which tells me that his CO is now about 48-49.  Not good.

Sigh,.... anyway, they finally managed to get the IV in with 4 tries, twice by the nurse, one time by the NP and 2 times by the IV team.  Ohh.... that's 5 tries.  Poor baby.  We thought he doesn't have to be stick for a while but I guess, it's soon.  Hopefully, he doesn't need another central line or picc. 

Ok... it's close to midnight now andd it's 60, I guess he is starting to be in deep sleep.  :(  Baby, you are already prolonging your stay here, you don't have to create more issues.  Sigh.

CO2 83??? Heart beat 190s??? Gosh... not the best day.

The whole family went to Maggianos since Yee Ma has a $50 gift card and we have a $30 giftcard too, after that, poh poh said she wanted to buy an ipad.... guess what... she finally did :)  Look at her, she is so happy.  We went to the Willow Bend's Apple store.

 

 

After that, we went straight to the hospital to see you.  I walked into your room... my eyes POPPED!!!! 

WHAT???  CO2 on the T-Com about 83?  Ok... this is not right.  The T-Com has been colerating with your gas.  I am not happy.  Then, looking at your heart rate, it's over 180s and sometimes 190s?  Ok... this is not good.

In my heart, I kinda knew right away that it's one of your little plan to continue your stay here in NICU :(

Here is a picture of mama with you.

And here is mama, kissing you sweet little baby.

You were just way too tired after the bath but I do notice that each time when you are not feeling well or CO2 is high, your eyes look really puffy.  

Anyway, Tammie, the NP assured me that if it goes up to 80 again, we will do something right away.  After that, your CO2 were in the range of 50-60s, which I still don't like :(  I was told that you need to be in the 35 range for CCHS.  How do I communicate this over that it is very crucial for you to be in that range?  Each time we talk to them, they would come up with a bunch of reasons, no, these kids are different from the normal kids :( 

We went back earlier since your Yee Ko didn't have much nap.  He is very tired and we drove just one car, so, we left earlier that night.  Take care sweet baby!



Second time changing the trach.... still not successful

I really dislike doing this.... It's NOT fun at all :(  I hate to change the trach.  They keep saying that it doesn't hurt him but honestly, the way you cried... gosh, it hurts me so badly.

Mama went to Costco first before heading to the hospital because mama needed to claim the cashback but mama forgot to bring the rebate.  Oh well... anyway, after that mama and gong gong headed to see you.

You did not throw a fit this time, not even when mama washed your hair.  Good boy but.... you got mad when mama was trying to do the trach change.  Poor baby, I can see that you were so upset and uncomfortable :(
Step 1: Take out the trach ties
Step 2: Clean your neck

RT Jason explaining to mama again what to do again since this is the second time.

Step 3: RT takes out the trach
Step 4: Mama put in the trach

Not successful, second try:

Finally.... RT has to push it all the way since you were clamping down again and reconnect the vent.

Step 5: Connect back the trach tie

Step 6: Finally, insert the gauze on the trach.

Guess what.... after all that hard work... you fell asleep even before mama put clothes on you.  My poor little baby... apparently, it will get better.  Mama is telling poh poh that mama will learn fast so that you can come home as soon as possible.

In the mean time... do you know what your brothers are doing at home?  Playing ipad all the long, are you excited to come home to play with them?

Can you see how much fun it is at home?  Please don't do silly things just to prolong your stay at the NICU ok?  Please have a great weekend for us so that we can move on Monday morning :)

STRONG??? I am not as strong as you think.

Thank you to all my friends, you guys have been sending positive things and telling me that you guys admire how strong I am.  I am so happy that I seem so strong to everyone and I am also amazed with myself how strong I appear to be.

There are days, especially before I found out about what all you have and the few days after I found out what you had.... I just wanted to go into the closet to hide.  I don't want to face the world anymore but do I have a choice?   I'll hide for a couple of hours and then, I have to face the world again.  I have been so calm nowdays, nothing like what I use to.  I use to be quick tempered, use to jump on things that eventually turn out alright and I shouldn't even have jumped in the first place.  I realize that I am no longer the person I use to be and I wish I am as strong as what you guys think.

I read something posted by Melissa Rhodes yesterday, she's the mama of Nash at room 9, Nash was born at 26 weeks and have been in CMC for months.  They have to possibly trach Nash as well.  She was at the Ronald McDonald House yesterday since they live in Long View, TX and cannot commute like me. That's where all the parents live if you live far away. Something she posted really made me feel so sad but it's true.  We all should be grateful in life.  You just don't know what you have and a lot of times, you don't appreciate it until you are thrown into a situation or lost something before you realize it.

This is what she said "Just hanging out in the dining room at Ronald McDonald House is another eye-opening experience. We see children of all types here. Burn victims who have no healthy flesh on the body, precious little girls with NO legs...but a huge smile, babies who are swollen all over for some unimaginable reason, lots of kids with no hair, and we all know why...sad, sad situations that are now the every day lives of regular people. "

I am not sure why I am chosen and I don't know why a few of us are chosen for the training but I know that God is definitely making us stronger than others.  Shelley tells me, she hates it when people tell her that "God gives special kids to special people", she said it's not true, God is making us special with, what he is making us go through.

So, what do you do when you've thrown in a situation like this?  I don't have a choice but each day, I hope that things will get better... people tell me that you will soon live your new "normal" life, it's not the normal that others live, but it's my normal.

What keeps me going? 

I used to worry a lot, wonder a lot too.  I needed plans, I needed goal to be motivated, I hate to live in a life where I don't know what to expect but after this experience, it changed my way of thinking.  Just have faith that things may work out eventually.  Joel Osteen once preeched.... The God who closes the door.  He said that they almost bought a land and wanted to build the church there, the land has been available for years and there isn't buyers and the night before they were supposed to close, a buyer came and bought the land causing them to not be able to close the next morning.  He was disappointed because it seems like it's the perfect location.  Now... they are at the old Compaq center, if they were to be in the other location, the Compaq center will never be their home ever.  So, in other words, at that moment in life, it may seem like it will not work out since it's not as planned but God have better picture and better things ahead for us.  So, stay strong and don't give up.

This is another good one that I like.

And lastly...

Yes.... I hate every min of what I am going through now.... I hate walking into the NICU, I hate seeing Laynson clamps down and turns blue and pass out, I hate it.... I miss my "old" normal life where I get to travel for work, I get to go out on the weekends, I get to do so many things instead of just going to the hospital.  I don't go out, I feel bad, I don't even go to Costco just to get something because I feel like I am "enjoying" myself if I do that, so, I just head to the hospital and back each day.  I don't like it at all but this is what it is now for me.  I cannot quit now, I am going through a battle... like all the CCHS mom keeps telling me... the first year is the hardest, after that, it will be a lot easier... suffer now and live the rest of my life as a champion....

Thank you friends for all your prayers.... we will continue to try to stay strong like what you guys think of us :)

 

Anyway... thank you to your dearest Koko go gave me his version of "Thai" massage today.  I feel so good after that :)

What we are doing at home with your brothers? You want to come home now?

My dearest little baby.... I want you to know how fun it is to be home with your brothers.  Do you know that your dada gave your second brother Laynden another nick name?  Well, grandpa gave him a nick name of "botak", in Malay, "botak" means baldy, it's because when he was born, he hardly have hair, even now, he doesn't have a whole lot of hair, nothing compared to you and your big brother.  Your Yee Kor LOVES LOVES LOVES the apple products.  Anything that starts with "i"... ipod, ipad, iphone... he will hijack the "i's" when he sees it... so, dada gave him a new nick name call "ibotak".  Isn't it cute?

Anyway, Yee Kor is turning 2 really soon.  I guess dada have sixth sense, he knew that day yee kor will destroy the otterbox cover that mama have for mama's ipad, so, he bought yee kor his birthday give, it's a Cars 2 ipad cover since he loves his ipad so much.

Here it is... it came today.

Isn't it cool???  Guess what, mama promise to get you 2 ipads if you want... anything that you want.  Shh.... don't tell your brothers mama said that, if they only knew what you are going through and probably will have to go through for the rest of your life.... I am sure they understand that mama is not being unfair.  Mama is just making up for everything mama can do.

Yay... finally something that has a lot more padding and hopefully your creative second brother will not find ways to break it.  This Cars 2 Disney Ipad 2 cover cost $49.99, it better last him for the rest of the ipad's life.

Check him out... he's so busy playing with his ipad... he loves it.

Anyway.... while your second brother is busy playing his new toy, I couldn't find your big brother, guess where I found him?

Koko likes to say... Cozy and Comfy.  I guess he's tired.

Anyway... I went into the closet to clean out the bathroom, just wanted to be more organized and your yee kor came and accompanied mama.  Ok... he definitely needs a diaper change.

Look at Yee Kor.... too busy with Cars 2...

Mama.... STOP taking pics.... paparazzi...

Ok.... mama is done... need to come visit you :)

Shhh..... can we walk to the hallway to talk about this? We're moving on to Our Children's house of Baylor.

So, as I walked in passing by the receptionist area, this lady said, you're the one that I am looking for.  I looked at her, wondering, who she is.  Then, she said, err... maybe not.  I'm looking for Laura.  I guess she thinks that I must have an Asian name or I don't look like a Laura.  I finally said, yea, I am Laura.  She's like... I'm Tracy from Our Children's house.  I said... ohh... great.  She said she'll come to my room to talk to me.

Anyway, I went into the room, you were sleeping very peacefully.  She came to talk to me, she said that we would know if we are moving there on Monday by tomorrow.  Wait.... we are going to C7 first before we go there.  She said, there isn't room in C7, so, most likely, we are going straight to Baylor.

YAY.... I am excited because that means, we will cut short 2 weeks or so.  The 2 weeks that you delayed and wasted Mr Lim.  Well, so, my plan was to play with you, I saw how Renee was playing with you and you liked it so, I proped you up, played with you and then, I really want you to do tummy time because I want to train your neck. 

Mama playing with you while koko snap a picture.  I guess koko didn't learn his photography skills when he was with Suki Ah yee, it's ok, I guess he has talents else where.

Mama... you are suffocating me.

Hmm.... no likey!  Not fun at all... 

You got mad and OMG.... this is the scariest episode that I've seen from you.  It really looks like you  had a seizure.  I don't quite like the nurse today, she's cold, doesn't seem to be nice at all.  Thank goodness, it is her second day in a row that she's taking care of you, so, at least the next day, I know I won't see her.  She's nothing like Nicole, Angela, Janette or Julie.  Oh well... anyway, honestly, I am afraid because this time, you really passed out and they had to resuscitate you with the ambu bag.  Your heart rate dropped to the 60s.  Ok Mr... I don't know how many of this episodes I can take.  I know they did tell me that this is a classic CCHS thingy but man.... this is not good for you and me.

Ok... this is you after you recovered but you were still passed out.

Well.... you finally fully recovered and got up and look at your cheeky face.... were you asking me... Mama... did I scare you, was it a good scare???

 Little Laynson, mama is very tired and getting really old.  These 3 months made mama feel like mama aged 20 years and mama's heart cannot take all these little suprises you are doing.  Please be a good boy, ok?

Good night sweet baby.