Lydia hospital day 24

The good news is, no big news overnight. The plan today is to see if Lydia can be more alert without being agitated. So, slow weaning of sedatives. She's on pentobarbital now, so we've moved up from, what, early 1800s (chloral hydrate) to early 1900s in anesthetic choice. Or something like that.

Lydia hospital day 23

Fairly uneventful night and morning. Lydia continues sedated. Lungs are basically expanded. No fever. So we wait.

Lydia hospital day 22

So, Lydia’s surgery went fine. She was still difficult to sedate overnight.

Then this morning one lung collapsed and she had low oxygen saturations for most of an hour. It’s expanded now and she is doing fine at the moment ... that is, “fine” as in no current threat to life or brain tissue, but sedated and chemically paralyzed until she is a little farther out from surgery and a collapsed lung.

Lydia Video

Here's a video of Lydia that was taken over winter break. Hope it puts a smile on your face.

Lydia hospital day 21

Tomorrow will be 3 weeks since we brought Lydia to the hospital expecting nothing more than a little overreaction or a little oxygen. I realized last night that we really haven’t seen Lydia in 3 weeks—she’s been unconscious almost the whole time. We miss her.

Today’s plan is to get her tracheostomy sometime today (she’s an add-on to a full surgical schedule), keep her sedated until then (now using propofol), continue i.v. nutrition, and continue antibiotics for probable bacterial (nosocomial Pseudomonas) pneumonia. The docs will keep an eye on her heart rate (~48) and blood pressure (~165/90 today), neither of which they completely understand, and investigate the hypertension with renal ultrasound and various lab chemistry studies. After surgery, they’ll stop the propofol, manage pain with Tylenol and continued opioids, and not worry if she’s a little too sedated for the next day or so. Then she’ll gradually wake up—without the hated tubes in her mouth—and we’ll see how she is doing.

Lydia hospital day 20

So, the plan was for Lydia to sleep until surgery. Unfortunately she did not hear the plan. She was up much of the night trying to tongue her bite block and breathing tube out of her mouth. She was not fazed by repeated doses of 3 different sedative / anesthetic agents, or by a 4^th one this morning. So Winona is sitting at Lydia’s bedside to help keep her breathing tube in and hopefully to help her calm down when she wakes up enough to see Mom. The ENT surgeon stopped by last night to endorse the plan for a tracheostomy and to say that he was pretty sure he could get her on the surgery schedule for Wednesday (tomorrow) morning. Lydia had a fever last night which may be due to bacterial superinfection in the lungs, but her oxygenation is still reasonably good. The usual suspect fluids were cultured so we’ll see eventually.

In the middle of this, the other responsibilities of life continue for her family members. Various distractions are employed when we can’t focus on work. For a sesquipedalian logophile, that can consist of browsing M-W.com for a few minutes after meaning to just check one word, and finding a new favorite word du jour, polyphiloprogenitive.

Lydia hospital day 19

This would be my mom’s birthday if she were still alive. It’s also Monday, and that means the whole team is in (plus Lydia’s regular pediatrician) and decisions get made.

Lydia’s oxygenation has been pretty good (O₂ saturation ~95% at FiO2 60%). However, even when she is fairly alert, her breaths aren’t strong enough to breathe without help from the ventilator. Plus, when she’s not knocked out, she hates the tubes in her mouth so much that she actually pushed the bite block out of her mouth this morning with her tongue, moving her endotracheal tube several centimeters and creating quite a little urgent chaos until it could be re-taped. Also, her bowels just aren’t moving and she’s full of gas.

The plan is to start i.v. nutrition today and to arrange a tracheostomy, possibly tomorrow. Among other reasons for doing it, the tracheostomy will allow her to be less sedated. She will basically need some breathing rehab (gradually strengthening her breathing muscles). There are a few other medical details that will bore most of you, the most notable of which is that they’re starting antibiotics because of a positive et tube swab for Pseudomonas. She has no fever, though, and her chest X-ray doesn$rsquo;t look like pneumonia.

So, Lydia is slowly improving, Dad understands a little better what Lydia’s doctors are thinking, and Mom has a plan, and therefore less uncertainty and helplessness.

The children at home continue to be big helpers. Charissa stayed Saturday night so Mom and Dad could go home. Lots of other people have helped too. We are grateful for all the faith and prayers. Many of you who talked to Winona or me at church yesterday (we attended different services so one of us could stay with Lydia) really lifted our spirits with your comments. The visits from our medical friends have been wonderful. My dad called and was supportive as always. The burritos and rigatoni and bread and cherry sours were pretty great, too. :) Thank you also to people who’ve given the school kids rides, and to people whose contributions I have probably forgotten to mention.

Lydia hospital day 18

Lydia is basically continuing to improve gradually, but is still in the ICU on a ventilator. She is asleep and expected to stay asleep for another day or two, so we are taking the night off and there probably won't be much point visiting her for a day or two. Her lungs seem to be gradually healing but she's not quite ready to breathe on her own yet (FiO2 ~ 65%, not taking enough breaths).

Thoughts for the day:
"I don't have any snot on my shirt today. I wish I did." (Winona)
"We're just sitting here waiting for poop." (Kind and skilled nurse)