Sunday, November 30, 2014

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.

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

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