Friday, July 20, 2012

Top Ten exciting things about having a kid with a rare disease:

Top Ten exciting things about having a kid with a rare disease:

10) Never waiting in the Emergency Room;

9) Getting excited when you get to just “go to the floor”instead of to the PICU, and then the sad, sad walk back up to the PICU;

8) Those, oh so comfy, gowns and masks that you get to wear until they figure out if your kid has MRSA or C-Dif; ....

7) Finding out that your insurance will pay for the pulse ox, but not the probes for it. Or, that they will pay for the wheelchair, but not the wheels;

6) Having the entire PICU staff do what you say because they are freaked out by your child;

5) Always winning the my kids sicker than your kid award (yay);

4) Leaving the PICU with 100 more things then when you came (how does that happen??);

3) Coming up with different religions to tell the PICU staff that you are. (I know you get matzo balls if you tell them your Jewish. I wonder what they would give me if I was Rastafarian?);

2)  The endless hours that you get to sit and wait and wait and wait uuuuunnntil the doctor FINALLY SIGNS your discharge papers

1)The endless parade of doctors that want to come and see this rare disease (How many doctors can you fit in a cubicle?) ;   

01 02 12

Monday, July 16, 2012

Trached and Traveled

Trached and Traveled”

New parents of medically complex babies who’ve had to have a tracheotomy are often overwhelmed.  On top of a lot of information necessary to understand and make decisions about their child’s medical condition and treatment, there’s also a lot to be learned in a short time about caring for and changing a trach.  For me, having finally demonstrated to the hospital staff enough trach knowledge to earn the right to (at last!) take my trached baby home, I was more than a little afraid to leave the house with her.  When I did eventually venture forth from my home with her, I did so armed with two bags:  one was a standard diaper bag; and, the other was a pre-packed, trach, “To-Go Bag” that contained everything I needed to ensure Mighty Z survived our trip to the Starbucks drive-thru.

Although Mighty Z, who has Congenital Central Hypoventilation Syndrome (CCHS), was eventually decanulated after being vented with surgically implanted breathing pacers, I have recently put on my ‘experienced trach-mom’ hat again.  My cousin's baby had to have a trach due to Transverse Myelitis, and even more recently, a dear friend’s baby has had to have one, as well.  So, I have had to brush up on my trach skills again, and in doing so I’ve discovered that it’s another one of those things that’s like riding a bike -- once you know the in’s and out's of a trach, it is something you don't really forget. 

The trach "To-Go Bag" is a bag that has everything in it to keep your trached child alive.  In order to do its job, the “To Go Bag” needs to be pre-packed and ready to go at all times.    

So what's in a trach “To-Go Bag”?  Good question.  The first step for a trach “To-Go Bag” is, well, the bag. There are many to choose from, but my favorite is the Skip Hop Duo Double Deluxe which is available at Bye Bye Baby. 

As far as what goes in the bag, here’s my complete “To-Go Bag” list:

An extra trach your child's size;
An extra trach one size smaller than your child’s size (the throat is the only part of the body that closes up in a matter of seconds – if your child’s trach starts closing up, it’ll be easier to get a smaller size in, and you want that);
Trach ties; 
Split gauze;
Spare exhalation valve for the vent;
Swivel elbow (for right at the trach);
Suction catheters;
Ambu bag;
24-hours worth of your child’s meds;
Tape (I like cloth tape);
Saline bullets;
 Extra set of vent circuits;
Chap Stick (it sounds odd, but Chap Stick actually can heal the raw redness around the trach collar);
HME (the artificial nose at the base of the trach);
Extra pulse ox sensors;
KY Jelly (for easier insertion of the trach (duh!));
Hand sanitizer;
Portable pulse ox (I like to carry one that is small and clips on the finger); and,
I’ve found that clear makeup bags are awesome for storing the above-listed items inside the trach “To-Go Bag” because they allow me to see what's inside each bag.  A small index card with a list of the contents of each clear plastic bag is also sometimes helpful for finding items in a hurry.  Finally, I liked to include a folder with sheet protectors, and it the folder I put information concerning my child’s disease, insurance cards, her med list, an allergy list, vent settings, emergency contact info, doctor info, etc. in case something terrible ever happened to me and I was unable to provide information needed by others to care for my girl. 


The thing about the trach is that once your child has had one for an extended period of time, it no longer looks odd to you.  In fact, to me it seems, (dare I use the word?) normal.  Caring for a trach and having a pre-packed trach “To-Go Bag” will soon seem the same way.  I promise.

01 02 12