Cruising with a child on life support (Trach & Vent)

Yay, we did it AGAIN!  Another one of our Mission Impossible events after knowing we have CCHS. Though, this experience we are sharing is based out of the Houston Port with Princess. We are not sure what other ports or cruise line would do.  We went on our first cruise from Houston, TX to Roatan Honduras, was supposed to go to Berlize as well but due to the weather, that port of call was cancelled and our final stop was Cozumel.  We went on our cruise with Princess.  Honestly, since it's our first cruise, it's already a PERFECT cruise, even though my other friends who has been to several different cruises told us that this is not the best but trust me, I am not complaining.

We didn't want to be late, so, we started our journey the night before.  We were at a hotel near Galleria.  We unloaded the stuff that we needed, of course his vent, ambu bag, etc.  All of the sudden, we said, where is the emergency bag?  Gosh.... we did not realize that we forgot to bring our emergency bag.  Thank goodness, mama happen to grab an additional trach with her in her handbag went we left.  I was very tempted to post a message asking MOTB if anybody is living near Houston that can give me an extra step down Shiley 3.5 trach but I guess I didn't think that it was necessary at that moment.  But after the incident which I will mention later, I think it was definitely something that I needed to do.

Anyway, we left that morning.  We were all excited, headed to the port.  I called the coordinator with Princess, when we were arriving.  It was definitely a VIP experience, when we got there, they signaled us and told us to drive straight to the front loading area where else others will still have to wait in line for their turn to get down.  After that, we were brought through the employee entrance, which again was a lot faster and I really appreciate that as I try to not expose him to too many people and that was perfect.  The only thing is we didn't get to take the "Welcome" cruise picture, which isn't a big thing at all, because most of it didn't turn out good anyways. 

We were excited as we were leaving.  We were supposed to leave at 4pm but somehow, it was delayed and didn't leave till 5pm.  As we were leaving, suddenly, the captain announced that we had an emergency and someone needed medical attention and we need to go back to the port?  Really?  I quickly texted my other friends to make sure that they know we were not the one that needed medical attention. 

Anyway, it was a fun night and day and suddenly, you just didn't feel well.  You had your fever and then just couldn't keep up your sats.  I am glad we brought the POC, if not, we would have been in big, big trouble. 

Then, came our first formal night, we were all dressed up ready for our pictures.  Mama let you play with the bread,etc and suddenly, you choked.  You showed signs of distressed and you were turning color.  I quickly took you out of the chair and laid you down under the lights.  I tried suctioning but nothing came out.  We realized that our emergency trach wasn't with us, it was up in the room, we forgot (another red flag and lesson learn with the trach baby to always have your trach with us.  CJ ran up as fast as he can and suddenly, you just gave up.  You just decided to quit breathing.  I told mom, we are losing him, we are losing him, I've got to get the trach out thinking that it could be a plug.  I took the trach out but saw it clear, I started bagging with the mask and then you started fighting me a little and you coughed and started crying again.  I am thankful that the waiter and his supervisor took it seriously and called 911.  But of course, but the time they came, CJ came with the trach and we immediately put the trach back in.  Suddenly, your sats are 98-100, you no longer need oxygen.  I thank the medical team that came, they told me to sign a paper saying that I declined to go to the medical office for further assessment.  They told me, you've done it all after all.  This little fighter ended up just sitting down playing his ipad and acted like nothing had happen.  We finally had the opportunity to take our formal family picture.  Honestly, I barely could smile because I didn't feel good for the rest of the night.

The rest of the cruise were just wonderful.  We managed to take more family pictures. 

We made it!  It was scary, there were a lot of things that we learn and we will continue learning about you and our life with trach and vent. 

Tips for special need parents:

1) If you made the reservation over the phone, immediately inform them that you are traveling with your special need child with wheelchair.  That way, you will get a room that is wheelchair accessible, which is at least 1/3 bigger than the normal rooms.  If you made the reservation over the internet, call the cruise line immediately to get a wheelchair accessible room.

2) Fill in the form, you should be able to find the form to fill for Special Need assistance and information on each cruise site.  If not, ask them to forward you the information.

3) Contact your local DME as soon as the booking is made to ensure that they reserve the Portable Oxygen Concentrator (POC).

4) Have a check list of what to bring.  We learn from our mistake.  We accidentally left our emergency bag.  Please note that we are lucky to get a syringe from them but if not, remember to bring the items that you don't usually use at home daily.  

5) For the vent patients, we have converted our 17" Targus Laptop Backpack.  If you see pictures of us carrying a backpack, we are actually carrying the vent.  I am planning to get another big laptop back with a handle and wheels so that we can roll for our next trip.  Also, we cut the side of the backpack, typically those segment is used to store mouse so that we can connect the vent circuit and still carry it.  Also, I have to put a small towel at the bottom so that the laptop and the side pocket's hole that I cut match and not break the vent circuit.  

6) Always bring extra because you won't be able to get much from the Medical department of the cruise.  

7) Don't count on the medical team on board.  Base on our choking and quit breathing incident, the nurses that happened to be there on our cruise did not have vent and trach experience.  When asked, she said that she has some, which you know it means none.  I thanked her for coming but she responded - You did it all by yourself.

8) Definitely have to bring extension cords, extra plugs because there is probably 3-4 outlet and it isn't enough for our machines, we had the vent, humidifier, pulse machine, CO2 machine, nebulizer, IPV, Portable Oxygen concentrator.  Some can be unplug while using the other but some has to be used concurrent.  Extension cords is crucial, if not, you will end up doing gymnastics like us, hopping over cords and with 2 other young kids besides Laynson, that has became a challenge. 

Lesson learn:

1) Always remember to bring our emergency bag.

2) Never let anything stop us from what we want to do.  It may be difficult but easy that life?
3) We bought a 17" Laptop bag with wheels so that we can roll the vent rather than to have to carry it all over.

Conclusion:
We are will be heading to the Alaskan Cruise in August of 2015 via Carnival this time!  

Saying goodbye is the hardest thing to do....

I left grandpa that day with a heavy heart.... though, I am so happy that you were also able to see your great grandfather.  Things that the doctors told you that you were not able to do were done...

I took off and headed back home alone.  I saw grandpa... he does not look like the grandpa that I left 3-4 months ago.  He lost 30-40 lbs within this 3-4 months.  He was diagnosed with TB, Lungs and Liver Cancer stage 4.  He barely could walk much, all he does is sleep all day long.

It's really sad.... I kissed grandpa many many times when I left that day.  I knew that it was the last time that I would ever see him in our lifetime.  I took off crying... wondering why life is so cruel... why do we have to know each other and love each other and yet, we have to say Good bye.  But I am also very happy and grateful that I got this chance, to see him for the last time before anything happens.  I asked myself, is it good that I had this chance or for some people, they don't even have the chance to say goodbye as their loved ones left suddenly.

Why is life being so scary?  Why???

Grandpa thank me, he said, he is very grateful that I came all the way to see him, to take care of him.  He told me that I'm his best grandkid of all, I take good care of him, I buy him lots of stuff, I give him lots of money.  I feel that since I am not there to take care of him, that's all I can give him.  I also thank him for being such a wonderful grandpa.  He loves me so much, growing up, he does everything for me.  He wouldn't even let me take my plate to the sink, he would do everything for me.  He built the BEST patio ever for me... made my house so pretty.

Grandpa, you just don't know that you are the smartest grandpa that I've known... you know so much, from cars to machines to building stuff.  You may not have the opportunity to get a degree but to me, you are smarter than all the other engineers out there.  You were very very sad.... I've never seen you cry... you were such a strong man but when I left that day, you broke down and you cried.... we both cried because it is so hard to know that this is our last time seeing each other.  

I'm very sad... but I will always remember all the beautiful moments we have cherished together.  I love you grandpa.... I will always remember you.....

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.