Midweek update

WHEW. What a day for information overload. I feel like we’ve lived through three or four days in the past 48 hours, largely because I keep being woken up and going back to sleep. Stuff that happened yesterday morning feels like it really happened earlier this week. It doesn’t help that I keep resetting the clock on my phone because I can’t handle running out of Candy Crush turns while baby is napping. What? Who said that?

Okay. So. Yesterday the head PICU doctor (same one who wanted to move Leah to peds before surgery) came in and basically gave me the impression that he had heard Leah was going home in a couple of days. You can imagine my incredulity and panic. I want to take this baby home SO BADLY but I want to do it when she’s ready, and she is not ready yet. She’s still on oxygen. She’s not up to bolus feeds yet. She’s still making terrible horrible awful breathing sounds. She just tested positive on two different cultures last week. She hasn’t been assessed for sleep apnea, hasn’t had her tracheomalacia re-evaluated, and hasn’t had <i>any</i> therapy or assessment with respect to swallowing or sucking. That is all stuff that has to be dealt with before she can come home. I’m not taking her out of this hospital without a sleep apnea evaluation; I’ve watched her stop breathing in my arms and then snort back to it. And I’m sure not taking her home without any sort of assessment as to how she’s even swallowing her own secretions, let alone whether she will be able to feed orally at any time soon. We had been told she would begin this therapy as an inpatient. She also needed to have her vocal cords assessed for damage following her stint on the ventilator.

SO I repeated all of this to her regular PICU doctor and he didn’t seem to think she was going anywhere any time soon – the head PICU doc made it sound like she’d be home by Friday or something. He assured me that the assessments I mentioned will take place, including the swallowing assessment, ENT exam, and sleep study. What does sound likely is that they will move her to peds soon, which I guess makes sense at this point because she’s relatively stable and not waiting for a surgery that would put her back here (barring any horrible setbacks).

My worries about peds are 1) I would guess there might be more sick and potentially contagious kids and parents since it’s not an ICU – I don’t know how strict they are about visitors who are getting over illnesses; 2) the rooms there have regular doors and not glass sliding doors, so I don’t know how the nurses see the patients when they’re not actually IN the room; and 3) there is only room for one parent to sleep in peds. That will not be very fun for us. Plus I have some concerns about attentiveness and the 4:1 patient to nurse ratio based on some things that I’ve seen and heard (one incident in particular), although the peds nurses who have floated to PICU have, for the most part, been great. I guess we really just don’t know until we get there.

SO. That was yesterday. All day I was complaining about the level of stridor she was exhibiting, but she didn’t seem to want to perform on command, so every time there was a doctor in there she got quiet. I think folks thought I was a wee bit crazy, but I knew she wasn’t breathing well. Apparently when I went back to RMH to do laundry the RCPs tried to wean her off the oxygen entirely, but she didn’t tolerate it so they went back to her previous level.

Today, I woke up at 5:30AM to what sounded like a creaking door in a haunted house. Was it a door? No, it was my kid’s breathing. I got a video this time, so that I could show the docs what I was talking about, and they agreed that she should not sound like that. They were already planning to have her evaluated by an ENT doctor, but they managed to get her to come by today to evaluate her. Grandpa Bill got a real show during his visit. The doc did the exam at bedside, which is to say that she stuck a camera down BabyBug’s nose until BabyBug was screaming like a very angry Donald Duck. This poor kid. It’s always something!

The ENT said she doesn’t think the stridor sounds are being caused by Leah’s tracheomalacia. She could not see the trachea in this exam, so she really couldn’t say for sure, but she said that tracheomalacia stridor usually manifests during exhaling. Leah’s squeaking seems to be happening on inhaling.

What she does see is as follows:

1) Leah’s vocal cords are not moving the way the ENT would like them to move. She referred to it as vocal cord paresis. She started spelling out “paresis” to me but I told her I’m familiar. *HEAD WALL HEAD WALL HEAD WALL* (What kept me down and out this summer was gastroparesis). The vocal cords are not completely paralyzed but she doesn’t see a lot of movement. She thinks that Leah’s vocal cord nerve may have been stretched a bit during surgery. Time is pretty much what she needs for healing. 2) Leah’s left vocal cord is a little thinner than the right one. This may be from the breathing tube.

#3 is where I start to get a little bit lost, but I’ll try to explain and maybe if you have a medical background you can correct me if I’m wrong. She believes Leah has laryngomalacia too, and that is what she thinks is causing the horrible squeaking. The way she explained it is that Leah’s larynx is floppy (like her trachea), and because of the combination of the floppy larynx and the resulting extra effort Leah has to put into breathing, the air travels through faster and creates this godawful creaking when she breathes. Something about the epiglottis. My sister could explain it better than I can. I’m sure I’ll understand it more once I read up on it. This is all new information and I don’t know offhand a whole lot about the anatomy of the larynx and associated structures. (But I can give you the complete legal history of same-sex marriage in California, which I did this afternoon for Leah’s nurse. Hey, she asked.)

The ENT did say she doesn’t think Leah is ready to try swallowing stuff yet – aside from the fact that her laryngomalacia could affect swallowing, she mentioned that the contrast study showed no leaks but the surgeons had expressed concerns about motility / peristalsis in the esophagus; just because it’s connected, that doesn’t mean it will function properly. Leah definitely wants to get started, so I hope her throat catches up soon. She wants very much to eat everything in sight, or at least to put it all in her mouth. Her fingers must be starting to get wrinkly by now. I guess she’s a baby or something. 🙂

What else… what else… Leah had another visit from the various volunteers who come around to sing to the kids. Today it was this singer-songwriter, Jennifer Paskow. She has a really pretty voice and Leah stared at her throughout the whole lovely medley of “Twinkle Twinkle Little Star” and “The Alphabet Song.” The BabyBug started to drift off toward the end. It was pretty sweet. Leah loves music! We’ll have to check out this lady’s work.

I had intended to post this update a good hour and a half ago but BabyPie got demanding. She was fuss-tastic, then she wanted to “nurse” and snuggle (yay), and then she thought she’d be cute and have another poopsplosion – RIGHT when the nurse was changing her diaper! WHOA. She thought it was hilarious. Great big smiles. I’m exhausted but pressing through. The minute this thing is uploaded I’m going to sleep!!!! (For the record: it’s nearly 2AM!)

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Look who held her paci for all of 10 seconds! GOOD GIRL!!!

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“Yeah, I know I’m brilliant. Applaud for me!”

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I’m torn between wanting to giggle and wanting to apologize for anything I might have done in the history of the universe that could have elicited such a face as this. Especially that last one. Not sure what she was pissed about but it might have something to do with that high-fashion hospital gown.

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“OH HAI, I’M CUTE!”

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The caption says it all.

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Leah laughing at/with her nursie today.

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Upside down bebe

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“Hi Mama! Nice to see you! I love my chair! I’m in a good mood! When’s my drugs?”

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“CHEEEEEEEEESE!”

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Like Aunti, like Babi.

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“Oh my gosh. I’m a burrito again. I’m so embarrassed. I hope I don’t run into anyone I know!”

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Sweet Bug

6 thoughts on “Midweek update

  1. To get infinite lives in Candy Crush, play down to zero lives, exit the app, adjust your iPhone’s settings so that the time and date aren’t detected automatically and move the date forward one day and open the game. Bam! 5 more lives. Then, readjust the settings to the actual date while the countdown clock is still at full so you can repeat the process.

  2. Well the good thing is she is happy n looking really good….She has came along ways n made it through the worse…..Love the pics so sweet….I ad well am concerned about about all heath needs before going home…..Praying for u all n have a blessed day…Sending love n hugs to u all…

  3. It’s really awesome that she’s putting things in her mouth! Many babies with a history of tube-feeding, intubation and suctioning have terrible oral aversion. Well done avoiding that! Good luck with the peds floor. We were nervous about that move, too, but it worked well for us. Here’s hoping it’s a short stay and that she’s ready to go home soon. (Also, Leah is ridiculously adorable. But you already knew that.)

  4. Lisa, you are incredible. Leah is lucky to have you watching over her. Your explanations of her daily doings make it feel like were are just out in the waiting room. With you and Mandy watching over her the move to PEDS won’t be horrible. Aren’t you glad California has a nurse ratio law on place??? Babybug needs some recuperation time….you need some sleep! Good luck.

  5. Relieved to hear they aren’t going to throw sense to the winds and send her home right away. I hope all the vocal cord/larynx issues resolve themselves soon!

    “When’s my drugs?” cracked me up. Oh, darling BabyBug.

  6. Hey Leah you go Baby Bug will be praying for healing and learning to suck so she can go home but not before she is really ready and Mommas have been preped to know how to handle any breathing issue. And of course for the breathing issue to be resolved before she goes home. I love the where’s my drugs photo best. Get all the rest you can and Mandy too. Love you all Cousin Marilyn.

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