Merry Trach-less New Year!!!

Yes, ladies and gentlemen, there has been no tracheostomy for Maisie the Great!

It's been a psychotic few days.

If you read my last post you know that she was scheduled for a tracheostomy on December 26.

This, friends, did not happen.

There was a scheduling mix-up (this happens WAY TOO OFTEN. Hospital people, GET IT TOGETHER!) and we were bumped back two days.

And then, by some crazy miracle, Maisie started breathing over the vent. Breathing on her own. Up until this point she had been riding the vent almost completely (allowing it to do all her breathing for her) and suddenly, she was working hard and struggling to breathe on her own.

It's obvious that it's very, very hard for her.

And she is still intubated.

BUT! The surgeon is going away for two weeks to celebrate the new year, and he and her pulmonologist want to give her another chance. So we're going to be in the hospital for the next few weeks. On January 14th, she will be re-evaluated.

Truth is, she will probably still get a trach.

But somehow, it means a lot to me that 2014 will not end with a tracheostomy.

2014 will end with hope.

Unfounded, ridiculous, illogical hope.

But hope.

Happy New Year :)

Christmas on the closed ward

Merry Christmas!!

I didn't actually take that picture but that's pretty much what Christmas in pediatrics looks like. 

There are baubles and IV poles, stockings and wheelchairs...it hasn't been very merry, to be honest.

I'm exhausted. I haven't been home in three days. One of the best Christmas presents I got was a shower in our next door neighbor's wheelchair-accessible shower, which is bigger and nicer than the cramped little thing in Maisie's room.

It was very sweet, it really was. They had a Santa come around just after the kids were woken up for middle-of-the-night blood draws and vitals checks, so they would hear a rustling and see Santa Claus delivering presents.

They all got stockings hung in their rooms that he filled, and the nurses had festive scrubs and there was even a Christmas tree.

And of course Maisie got some lovely presents. Jeff made sure of that.

It's all been overshadowed by the news we got this morning.

Yep.

After dilly-dallying for days, the doctors have finally decided that the best thing to do is trach Maisie so she can come home. It's become very clear that she can no longer breathe on her own.

The surgery is scheduled for midday tomorrow so she'll probably go back around dinnertime. 

*laughs* Hospital time.

I'm sorry this has been such a mleh post. I'm just feeling like a Debby Downer right now.

I want to go home. I want Maisie's lungs to do their fucking job. I don't want a trach.

....stiiiiiiilllll in the picu

Yep.

We're still in the PICU.

(this is going to be a long post, I've been trying to write it for a week. More stuff keeps happening.)

When I posted four days ago I thought this would be over-and-out in a matter of days. At the very least I was sure we would be out of the intensive care unit in a few hours.

I was very wrong.

Maisie is one sick little girl. They've confirmed pneumonia/pleurisy/pleural effusion. All that on top of her already-weak lungs is why we're still here. She isn't breathing on her own.

So she's still on the ventilator. She had to be intubated again around eleven Monday morning so she's still on the vent, but weaning. Slowly.

(I think I made a mistake in my earlier post; she was intubated in the ambulance, switched to a BiPAP around 8:30 in the morning, made it about two hours crashed, intubated. Looking back the timing in that post makes almost no sense. Forgive me, the ER is not the best place to get a good night's sleep.)

The pneumonia/pleurisy is being treated with two different antibiotics and Prednisone, which finally started making a difference today. She has a chest tube draining the pleural cavity and is on albuterol every four hours.

The vent is doing I think like seventeen breaths per minute, which is better than the thirty she was originally on, but still not great. Her regular breathing rate is 22 breaths per minute, so she's doing maybe five on her own. 

At this point she is resting comfortably and breathing fairly easily, if not by herself.

Ick, that sounds like she's dying.

She's not dying, folks. 

Even if her lungs fail her completely and she can no longer breathe on her own at all, she's not going to die.

That's the miracle of modern medicine.

My daughter is alive only because of the advances we have made in technology.

There's even this thing they can do where they cut a hole in your throat so a ventilator can breathe through your neck for you.

Yeah, I heard the word "tracheostomy" for the first time today.

We might be going there. I don't know for sure yet. Our pulmonologist is kind of young and has never prescribed a trach before, so she asked two other pulms who happened to be in the building today to pop in and evaluate Maisie. The three of them will pow-wow and then I'll get to say my piece, and we'll have a whole meeting with her "sick-team" which consists of the pulm(s), the pedi, child psychologist, and like four other doctors. 

^^^That meeting just happened (this post has been now seven days in the works). 

The consensus is no trach. Yet.

Her lungs have cleared up and she is still relying on the ventilator only because her muscles are too weak to move air into and out of her lungs on their own. At this point (three days after I posted about her breaths/minute) the vent is doing fifteen breaths per minute, and Maisie is taking seven on her own. Which is progress. I don't know if it's enough progress, but progress is progress.

Actually it might not be progress at all. On Sunday when she was intubated she was on thirty breaths per minute and not breathing on her own at all. On Monday afternoon we were able to take her down to seventeen breaths per minute (her regular respiratory rate is 22 breaths p/m) with her doing about five on her own. Now she's down to fifteen breaths per minute from the vent, but she might have been able to do seven breaths on her own from the beginning. Ah well.

The thought is to try to take her down as much as possible today. If she can get to eleven breaths from the vent and eleven breaths on her own, the trach will be completely off the table.

That's not to say if she can't make that much progress she'll be trached tomorrow. We'll re-assess tomorrow if that's the case. 

*le sigh*

OH! She is out of the PICU as of yesterday night though. Her lungs are clear, her vitals are good, and she's totally stable. So that's good news.

My new babe is seventeen weeks! Everything seems pretty good. I had an ultrasound while we are here and so far, so good. The tech was a little worried about her right arm, but she's pretty confident that she couldn't see it because of the position the baby was in.

Either way, I have a level 2 ultrasound scheduled for next week just as a precaution, given the complications around Maisie's pregnancy and birth, but I'm not worried. Too much worry is spent on my Maisie the Great, I guess.

PICU

UGH.

I am so sick of getting kicked in the butt every time we get into a groove. Things start going well, Maisie's making progress, yada yada yada, and then

BOOM

Respiratory arrest.

The chest x-ray showed a lot of fluid in the lungs and inflammation of the bronchial tree, but nothing too serious. The pulmonologist put her on twice a day Advair (which is a NIGHTMARE to administer btw because she doesn't inhale on command) and albuterol by nebulizer every four hours. For a couple of days we were doing that and all was going as well as could be expected, and then all of a sudden on Sunday night she was coughing and choking. She went into respiratory arrest and was admitted to the PICU through the ER at 10:00 on Sunday night.

It was a rough and scary night. She was intubated in the ambulance (which was TERRIFYING) and didn't get extubated until around eight this morning. They tried to take it out at one in the morning but she crashed almost immediately. Finally this morning they switched her to a ventilator breathing room air but with oxygen through the nasal cannula.

She still has a lot of fluid in and around her lungs. An hour ago they put in a chest tube to drain fluid from the pleural cavity and take a biopsy. They're also biopsying the mucus she's coughing up.

I will update again as soon as I have more info.

Tubes

Somebody has an oxygen tube.

WAAAHHH.

Maisie had a "breathing episode" yesterday that culminated in a trip to the ER. As you might know she had a lobectomy when she was a two and a half to remove the bottommost lobe of her right lung because it was nonfunctional and at risk for causing infections. Anyway, yesterday her sats were in the 60s and refused to go up after two nebulizer treatments and then they suddenly dropped into the 40s. I called 911 (she was BLUE). The only thing that got her oxygen sats back to the mid-80s was the oxygen tube in her nose. So that's where we are right now. Kind of exactly like this poor baby:

No idea how long the oxygen tube will be with us. We have a lung x-ray and a follow-up with the pulmonologist scheduled for tomorrow afternoon, and hopefully then we'll get some clarity.

UGH.

These feet were made for walkin'

WE HAVE WALKAGE!

Well, not exactly.

Princess Maisie spent the morning gripping the edge of the coffee table in her little Christmas footie pajamas, lifting one hand at a time and putting it back down. At first I thought she just liked the noise, but I realized that she was trying to stand so I put her little AFOs on, which look pretty much like this:

And fifteen minutes later she stood up! All by herself!!

And then she fell down.

And then stood up again after trying for like half an hour!

AND THEN SHE TOOK A STEP BEFORE SHE FELL DOWN!

It's the little things, guys.

Look ma, no hands!

I have felt energy from this little girl like nothing I've seen in years.

She was up and down, in and out, playing with everything and making a mess.

Maisie has been "walking" in a pediatric walker for weeks now. 

It looks a bit like this and gives her A LOT of support.

She needs it.

Her gross motor skills are pretty limited. She can stand holding the edge of a table or a hand or something. She can sit up. In the walker, she can move. But I've never seen her stand unassisted.

We started putting Christmas decorations up today.

Maisie was "helping" by using the various boxes to practice her standing.

I tossed a stuffed snowman out of a box.

She saw it, and turned toward it.

She let go of her box.

For maybe six seconds, she stood all by herself.

And then she was so surprised by what she had achieved that she fell over.

In sickness and in health

Last Friday I called my mom to let her know that I was in the hospital, and she immediately wanted to know what's wrong with Maisie. But nothing was wrong with Maisie, it was me! I was hospitalized after I spiked a 105 degree fever at around 2:00 on Friday morning. I woke up in the middle of the night freezing, shaking, and delirious. Then I vomited six or seven times and passed out and Jeff called 911. I'm fine now, they gave me an antibiotic and IV fluids and something for the fever and kept me overnight. Turns out I just have a very bad flu. I came home on Saturday night and I'm feeling worlds better today.

This post is about Jeff. My hero.

When I woke up on Saturday morning I was thinking clearly for the first time in 24 hours and I immediately freaked about Maisie. Had she gotten her meds? Her enzymes? Her meals? Her boluses? Did someone check and clean her stoma and change her button buddy? Had she been weighed?

The answer is yes.

Jeff was amazing. For twenty-four hours he took care of all of Maisie's many needs without me. He sent the ambulance to the hospital with our neighbor, a dear friend, to take care of me and stayed behind with Maisie. When she'd had all her medications and could just chill he switched places with Stacy, and stayed with me for a while.

This man. Jeff is amazing. He did not have to take care of Maisie as much as he has. He made himself her father because she did not have one. What a guy.

Thank you.