Day 45

Dear Diary,

Today is my forty-fifth day on this strange planet. The natives call it "the Hospital."

The food here is not unlike that from my home, but it is strangely flavorless.

Despite having access to a variety of dishes, many of those who live here choose a diet made mostly of pudding, jello, orange juice, and ice chips.

Some of the natives do not eat at all but are fed homogenous liquids through holes in their stomachs or a needle in their arm.

I have observed that the people here seem to belong to several different tribes, identifiable by their distinctive clothing.

The men and women in ill-fitting, matched shirt-and-pants sets are in tribe called "Nurses."

Some people wear similar attire to the Nurses but with the addition of a sort of stiff, white coat. These are Doctors. Some Doctors wear suits or dress shirts and slacks under their coats.

There are a small number of adults with a constant look of worry on their face. They are typically in comfortable, soft clothing and do not bathe or change their attire as frequently as they probably should. They wash their hands far more than I would deem "normal." These are Parents.

Members of all three tribes work together to serve small beings of a different tribe: the Patients. They spend much of their time in bed, often wearing simple dresses.

I fear that I am succumbing to Stockholm Syndrome, dear Diary, for though I hate it here I will not leave until my captors, members of the Doctor tribe, tell me I can go. I am free to leave, Diary, and yet I will not. I am afraid even to leave this room long enough to shower or eat food. I am going crazy, Diary. Why am I doing this? Why am I behaving so strangely?

Oh, I know.

It's because I'm in love.

I'm in love with a little girl with gigantic eyes and a beautiful, rare smile.

My Maisie girl.

Screaming therapy

Today is our forty-second day in the hospital.

I'm going kind of crazy.

Don't get me wrong, I love this hospital. Our doctors and nurses are fantastic, the facilities are beautiful, and the care here is absolutely top-notch. But it's a hospital. If you ever meet someone who says they enjoy the hospital, they've never spent sixty-seven consecutive days in one (and that's just my record. That's nothing in the medical community. A NICU friend was hospitalized for almost a full year.)

Anyway, despite my cabin fever, today was a good day. Maisie is adjusting to the trach as well as could be expected. Her first day and a half after surgery were pretty rough. She historically does well with anesthesia, but she just had a hard time coming out of it this time around and there was a lot of vomiting and general loopiness. (Loopidity? Loopy-ness? I have no idea.)

The third day was really spectacular. She vomited up her dinner, spiked a fever around 8:00, sweated it out at 104 for two hours, slept for nearly twelve hours, and woke up a totally different girl. She found her voice and complained loudly and relatively coherently about the ventilator for the next hour. 

Speech therapy started immediately.

I should make it clear that Maisie is not mentally impaired. She is as intelligent and aware of her surroundings as any other five-year-old. She sometimes appears mentally disabled because she struggles with speech quite a bit. She was quite chatty as a two-to-four-year-old, in that sweet spot between recovering from her traumatic infancy and the onset of myasthenia, but her speech tapered off dramatically a few months after she turned four because she was losing the muscle tone necessary to coordinate speaking and breathing and walking or moving at all. After she started treatment, her speech improved a little bit. 

Up until November of 2014, Maisie had a vocabulary of about two hundred words. Her speech dwindled and now she has mastery of maybe fifty words, none of which she employs with any regularity. We have all been delighted to hear her complain loudly and verbosely about the trach and the vent and encourage her to yell and protest and even kick and scream as much as she wants. It's all good therapy XD

Update

(this should have been posted on January 17.)

A lot's been going on, my friends.

I don't even know where to begin.

Maisie was re-evaluated by a whole team of doctors -- a pulmonologist, a thoracic surgeon, an ENT, a child psychologist, a general pediatrician, a respiratory therapist, a Myasthenia specialist...I don't even remember who all -- on Wednesday. They all agreed that she is struggling to breathe over the vent, and the nurses who stopped in testified to how much she hates being on a ventilator. She works very hard and very deliberately to knock it over, disconnect it, even kink the tubing. 

The CP didn't really have much to say. She was there because there is a psychological component here since Maisie clearly hates the vent, but seems very confident that if Maisie becomes vent-dependent, she'll get over it. She also said that if Maisie would probably work hard to be off the vent and if the deciding factor is whether or not Maisie will do the work to breathe on her own, then she should be learning to breathe on her own again.

The thoracic surgeon had previously ordered an MRI on her lungs and after examining the images declared that her lungs are still healed nicely from the lobectomy three years ago. He was confident that her breathing troubles today have little or nothing to do with the missing lobe and doesn't think any more surgery is necessary.

The pulm agreed that what is left of her lungs seems healthy, i.e. nothing else has died. She has had a chest x-ray, a dynamic MRI, and a billion PFTs (pulmonary function tests) all of which showed clear lungs that are expanding less and less the longer the test goes on. Her dynamic MRI actually showed her diaphragm starting to shake with fatigue after five minutes.

The respiratory therapist and the Myasthenia specialist conferred for a long time over whether or not Maisie will gain the strength back to breathe. And the answer is still up in the air. The therapist and the ENT were sure about one thing: Maisie cannot be orally intubated any longer. Her trachea and lungs are torn up and bleeding and she will start to have other problems if we don't make a decision.

So here it is: Maisie got her trach early yesterday morning. The surgery went well. We are very hopeful that the trach is a temporary solution while Maisie's meds are adjusted and wiggled and we try to get her diaphragm's strength up again. The MG specialist has seen cases like this go both ways, and there's really no way to know what will happen until it happens.

I AM EXCITED

GUYS

I got to go home for the first time in like forever today!!!!

Maisie has been extremely on-again, off-again this hospital stay and even Jeff was more than willing to stay with her (and oftentimes both of us were there) I was afraid to leave Maisie lest something happen to her (she's at NYPSC -- the pediatric specialty care hospital in NYC -- so she's like two hours away from home.) BUT she's been really stable for the last few and I really needed to shower in my own bathroom. Like really really really. GOD I missed my shower gel! And my loofah! And my mirror!

(obviously Jeff brought me stuff like soap and towels and a change of clothes but I mean there's only so much a man can do.)

This was the first time since Maisie's hospitalization that I actually went home. I left the hospital to go get food and some stuff from CVS a few times, but other than that I really haven't left. So it was AMAZING to be in my own house again.

I packed like a freaking sherpa while I was home. Ever since we heard rumors of a trach, I've been obsessively reading this blog. And I laughed like a hyena when I read this post. It's so true!

I brought a suitcase for me with jammies, fresh clothes, dryer sheets to keep everything smelling nice, my favorite lotions and and soaps and washcloths and towels and food and just...a lot of stuff.

Then I packed a suitcase for Maisie full of fresh clean clothes so she could get out of the hospital gowns. I packed literally almost every toy and movie and book we have. I brought her huge collection of button buddies so we could stop relying on the itchy gauze pads. And I brought her "Maisie the Great" sign that my mom made :)

Maisie herself has been doing okay. She's still working very VERY hard to breathe over the vent, even though it is obviously very hard for her. It's very clear she hates the vent and wants off of it.

Exhibit A: Four times Maisie has clenched the tube in her little fist and yanked. She has very nearly completely extubated herself twice.

Exhibit B: Maisie figured out about a week ago how to disconnect the endotracheal tube from the ventilator and has done so several times a day. Now she's got No-Nos. I don't know why she's surprised.

Exhibit C: The ventilator got moved a little closer to Maisie than it usually is so that a nurse could get to the wall, and Maisie managed to kick the vent over and break it. Luckily it was fixable and the portable vent was sufficient until she got hooked back up to a stationary.

Maisie the Great Troublemaker.

Bodies

I had my third ultrasound this morning and it's been confirmed that our baby has some limb differences.

Her right arm is amputated below the elbow and her right foot is weird. Hard to tell from the ultrasound what "weird" means, but it's pretty obvious that it's not normal.

And you know what?

I don't really care.

I know that some people might be really devastated by this news, but the thing is, our little squish has no abnormalities in her lungs, heart, brain, eyes...none of the stuff that really matters.

And that stuff is what really matters. In the long run, kids who have limb differences lead much more "normal" lives than kids with complex medical problems -- kids like Maisie.

I've been perusing blogs like This Little Miggy, whose daughter "Lamp" has limb differences affecting all four limbs.

And she's just fine.

We have no reason to believe that Squishy will be any different. (yeah. Squishy. That's her nickname. We don't know what her gender is, but I feel certain Squishy's a girl :)

Seventeen days

That's how long we've been in the hospital.

Seems like a lot long than two weeks, but that's all it's been.

Maisie is fighting hard to breath over the vent and while she's not doing a great job right now, it's obvious that she's trying.

She's perked up a bit in the last day or so and was even alert and happy enough to dance to Taylor Swift and ring in the New Year.

She's off of antibiotics and anything other than what she takes normally (Mestinon, Imuran, Zyrtec, Levalbuterol, Keppra, diuretics, Prozac, digestive enzymes.) Her chest tube was finally pulled two days ago and she officially no longer has pneumonia or pleurisy/pleural effusion. So that's good. Her breathing problems are completely due to hypotonia.

I did have a level-two ultrasound a few days ago and it seems that my baby might have limb differences. I have another scan day after tomorrow to get some clarity, but the consensus seems to be that nothing besides her appendages are affected -- normal brain, heart, lungs, etc. Which is awesome. After everything Maisie went through, I honestly can't complain over a missing hand.

<3 Charlotte