Tricks of the Trach

Hey all,

Just wanted to give a quick little update.

Moriah is doing well - besides the fact that she pulled out her trach three times in three days. It has been happening when I'm not there, and I've heard that she has some reserve at first, but then when she has everyone holding down her arms and pushing back her neck to get the trach in, she flips out and will desaturate to the 40's. She is a feisty thing...

We have been scurrying around to try and make it more secure i.e. taping her ties, not using the green oxygen HME

and just using a regular oxygen mask,

using different trach ties,

etc. Our favorites are Danny Ties, and so we will probably have to order Smalls instead of Mediums.

However, in the end, we ended up changing out her trach to a short one (if you look in the pictures, you can see how far beyond her neck the original trach goes). Initially, when the long trach was put in - called a Bivona Flextend,

it made our lives so much easier because Moriah, apparently, is missing her neck, and everytime we went to put her back on the vent, it would be a fight to push her chin up so that we wouldn't pinch her chub - unfortunately, her skin did get pinched a lot. For that purpose, we loved the long trach.

But now that she is off the vent more and more, we succumbed to putting in the short trach.


The scary thing about the short trach is that she has to have an HME in place,

or else she closes off her trach with her neck chub - apparently, she still has no neck!

The battle is never ending...

My body was overcome with exhaustion from all the mini heart attacks Moriah gave me during the week, and I woke up with massive, swollen tonsils on Saturday morning. Justin was on Daddy duty the whole weekend, taking care of Moriah in addition to his grumpy, sick wife ;-)

I'm feeling much better today, and will go see M later on.

For any of you needing advice or answers about trachs, I came across a great website called
Aaron's Tracheostomy Page

Hopefully I will get a chance to post new pictures soon!

Love,
Victoria

Our New Ride

So, we finally got around to getting a stroller for Moriah. She fits. Check.


Now, we just need to figure out how to get in her:
Ventilator

Ventilator Battery, which weighs a thousand pounds alone

Oxygen Tank

Emergency Kit

Suction Machine

And last but not least, Diaper Bag, for you know, all the normal baby stuff

I think I'm going to invest in some duck tape and bungee cords.

Haha. I'm still wondering how I'm going to even push this around once I get everything in. Let's not forget that I'm only 5'2, 105 lbs. Yeesh. I don't know whether to laugh or cry right now.

*oh yeah, some of you have reminded me - i forgot to mention her feeding pump AND pulsox machine - I told you this girl comes with accessories!!*

Holy Cow

There were about ten more people in here in addition to this just minutes before. We called the Rapid Response Team because Moriah was looking really bad: CO2 in the 80's, lips were blue, gasping for air, bad perfusion, etc. We knew she was going down hill.
They came within minutes.
They bagged her. Suctioned her.
The culprit.
A really big, deep mucous plug.
Then it was noted her water heater for the ventilator was empty (the humidified air prevents mucous plugs!!!) Combination of this with the abdominal migraines is no bueno.
We are officially traumatized.
Several lessons were learned.
Moriah is doing much better.
We are all officially wiped out.

Who Would Have Thought...

That we would be on the same floor of the hospital at CHLA now that we were on exactly ten months ago, November 1st, 2008?





I know I sure didn't think this would be the case.
But does anything ever go as we would expect?

"Many are the plans in a man's heart, but it is the LORD's purpose that prevails"
Proverbs 19:21

I finally remembered why no one likes general care floors...because if something goes wrong, it takes FOREVER for things to get done...
Its 230 in the morning and moriah has only slept all but two hours in the past 18 hours, and is totally wigging out like she is withdrawing. The only thing that doesn't make sense is that nothing has been weaned in the past few weaks. So I'm thinking that a) a nurse accidentally missed the dose, which unfortunately is quite easy to do here because they draw all the medications themselves or b) she could be brewing something...
I'm really hoping that it is JUST withdrawal.
Sigh.
We are starting to tackle it, and have just gotten around to giving her a prn ativan. We will go from there and see.
I have the feeling that this is going to be a very long night!

Tour Our Room

Some blogs take you on tours throughout their houses, so I thought I would do the same. Except this isn't my house. This is my life.

What we have here is my chair. This is where I sit when I want to relax for a few minutes or take a little cat nap. You know you want to sleep here ;-)

And here is my wall of obnoxiousness. Yep. It came to that.

And here is the focal point of the room. The sweetest baby complete with all her accessories...

Hope you enjoyed the show. =)

And I couldn't do this post without adding a picture of the chunkamunk smiling. This was a couple days before the infection showed up on culture, but we already knew she was sick, one of the reasons being this rash she develops, and boy does it get red hot!


Will continue to update. Please keep us in your prayers. Cannot stress enough how tired we are...

All I Ask For Is One Day...Just One

I can't even take the afternoon off and stay home to try and tackle all of our things that haven't been touched in 9 months. The place is an absolute wreck and I have things stacked to the ceiling.

I worked so hard over the weekend with the Nurses and Doctors to set up everything for Moriah, and make sure things were in order i.e. make sure we have rectal thermomemter, cooling blanket, explain baseline heart rates, etc.
However, of course, when I call this morning, none of those things have been done, Moriah's temp is creeping up, and Im explaining/arguing with the Nurse again as to why we do those things, even though there were orders written f or all of those things. Of course, the orders arent there anymore.
We've been doing this stuff for 9 months! And I know this happens everywhere at every single hospital. It just sucks.
I am pissed. I am so tired of having to explain over and over again to every freaking person about why we do things the way we do for Moriah - first the Nurse, then the Resident, then the Fellow, and then the Attending. I did all that over the weekend, and sat down with them to explain why.
Im really stressed and feel like crying.
I need prayer.

I Don't Know What Is Going On Anymore

Mine and Moriah's t-shirts this morning. You can imagine the fright I had when I picked Moriah up from her exersaucer, heard a "snap" and saw blood gushing from her. I yelled for her Primary Nurse, Emily, and she and Nurse Christy, Nurse Jackie, and Nurse Amy all came running into the room when I said she was bleeding. Meanwhile, Moriah was happy as a clam and didn't feel a thing while I was shaking and crying, not knowing what happened. Turns out, I snapped her broviac (a permanent IV) in half. Great.

They are getting someone to see if it can be repaired. If not, a new one has to be placed because they cannot transfer without reliable access. I don't know if we're ever going to go home. Still haven't heard from either CHLA or Huntington either.

Please continue to pray for everything to be worked out. We know it will, but maybe for a little bit of a smoother transition. =)

Thanks.

Love,

Victoria

Moriah Missed Her Friends in the ER

So, we had a late night in the ER because Moriah's GJ tube slipped out!

Baba invited Nurse Jessica, Moriah, and I over to her house for lunch yesterday, and while we were there, her feeding tube - which goes all the way into her small intestines - came completely out of her! It was only a matter of time before that thing was going to come out and so yesterday was the day.

Anyway, thank goodness Nurse Jessica was with us and took control of the situation, while Baba called 911, and I started doing who knows what. Luckily, Moriah didn't even notice that the tube was gone, and was her usual, happy self. But, since we only had a matter of time before the hole in Moriah's stomach started to close, Riggs ended up driving - more like flying - all of us to CHLA ER.

At first, they were going to admit Moriah because the Doctor who did her GJ tube wasn't there until Monday. But luckily there was another Doctor on call who was able to put it in for her, which saved us from having to sleep at the hospital in those uncomfortable chairs! Phew! Now Mo has a nice, clean, brand new feeding tube. Yeah! (the things we get excited about now). In addition, they found M had a urinary tract infection and gave her antibiotics to treat it. So again, this turned out to be a really worthwile trip to the ER.

Meanwhile, Justin had been in San Francisco for the past few days for work, and he just flew in right around the time we were getting out of the hospital. Poor guy. He missed out on all the "excitement." =)

I LOVE my Nurse Jessica. She's my hero!


Riggs, what are you doing to me?! =)

Me and Mama

Baba, Riggs, and I playing

Um, excuse me, can I go now? I'm done seeing my friends...

Venting

Just had a HORRIBLE experience with the Occupational Therapist Regional Center sent to work with Moriah. It was his second time coming to work with her, and I already had my reservations about him from the last time. Everytime I would ask him questions, he would explain it to me in terms that I could not understand. I had to keep asking him over and over again until he simplified it for me (what the heck are joint compressures to help the posteriur and anteriour trunk blah blah blah). He never once looked at Moriah nor talked to her. He went straight to these way too difficult exercises for her and made her cry everytime. I kept asking if he could do other exercises to help build Moriah's strength up to do the difficult ones, and he said no, that either she can do them or not. The worst was how he made me feel like I had to apologize for my daughter.
The session ended on a terrible note. Needless to say he will not be coming back. I am so frustrated with Regional Center because we applied back in May and only now they send me someone - and the therapist was AWFUL.
We miss our OT Gina and PT Dave, who were through our private insurance. Moriah really needs these therapies, but we've tapped out our limit with what our insurance company gives us for PT and OT. I am just tired and frustrated of dealing with these sorts of things.
Sigh.
Any advice, suggestions, encouragements are welcome.