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)

Lydia hospital day 17

Status quo. Since last night she's had a lot more sedation and has been asleep or groggy most of the day. Lung function is stable at this point, with high O₂ levels in blood on about 55% inspired O₂, and modest ventilator support (e.g. PEEP=10). At this point it is a challenge to find a level of sedation that leaves her reasonably calm and comfortable without bradycardia (HR 48-60), depressed respiratory drive, and marked constipation. The plan is to see if those problems can be fixed enough that by Monday she is able to breathe on her own.

It occurred to me this morning, after watching this case study of sedative benefits versus side effects, that letting you breathe means allowing the possibility that you can cry. A good sermon probably lurks somewhere in that observation.

Lydia hospital day 16

Slow progress, I guess. Yesterday and today, she has been awake and miserable part of the time—apparently just scared and not understanding what’s up. On the good side, she’s traded her internal jugular catheter for a PICC line (inserted in an arm vein), and her oxygenation has been good on 55% inspired oxygen . . . not to mention the continued heartbeat, which we shouldn’t take for granted. Thank you for all the help and thoughts and prayers. It is hard to see your child sick and be powerless to help.

Lydia hospital day 15

Well, things are looking a little better this morning. Lydia has lost a chest tube and a urinary catheter, so now she’s down to 4 pieces of plastic entering her body. Her NO and O₂ requirements are lower, she’s initiating some of her breaths herself, and she was awake, if groggy, for much of the morning. The plan is to gradually reduce her oxygen and change her ventilator settings until she is at a point that she can switch to a mask instead of a breathing tube. Optimistically that might happen Monday. She had a fever last night but not today. She can’t talk with the tube, and her wrists are restrained to keep her from pulling out important things, but she can sign “milk” and she was upset this morning when no one would give her milk. She is getting adequate nutrition but none of the enjoyment of eating. Winona showed her some family pictures earlier, and she looked excited and tried to say “Ahh” when she saw the picture of herself with Ariana. At this moment she is sleeping.

So, this is all exciting. (Unless you know too many things that could still go wrong. Then it is still exciting, but you don’t dare exhale yet.)

Lydia hospital day 14

It is hard to look for good news when your kid is still tied down breathing on a ventilator. But here goes. The good news is, she is still off the paralytic and pressor drugs, her pleural effusion seems mostly to have dried up, she is tolerating the tube feeding, and the antibiotics are being stopped. She is taking some breaths spontaneously. Her markedly slow heart rate from yesterday suddenly doubled this morning. No one is quite sure why either happened, but they are taking care of all the appropriate possibilities.

On the other hand, she still has occasional spells of low oxygen in the blood, that respond only partially to more oxygen, and sometimes when she wakes up for a minute she looks very sad. Of course she has no clue what is happening, and with the et tube and restraints, she can’t talk or sign. I can only imagine how scary and frustrating it must be for her, during the brief moments when she is conscious. So for now she spends almost all day out of it, on morphine and “son of Valium.”

Blah blah again. Intellectualization only goes so far. It is very hard seeing her uncomfortable and knowing that some of the things that are making her uncomfortable are keeping her alive. When she looks up and sees my face or Mom’s, does that comfort her, or does she think we are complicit in her misery? I was wondering this morning if we seem that way to our Heavenly Father sometimes: entirely ignorant of what is going on around us and why, sometimes hating the very things we need most, and sometimes even blaming the caregiver for our discomfort.

It is very interesting (though not enjoyable) to watch medical care from the other side of the stethoscope. I’ve done that a few times now since med school, and I am still amazed at how each time it reveals things about medical care that I want to avoid or emulate in my own practice. Many of the best things I’ve seen are summed up in this famous quote: “the secret of the care of the patient is in caring for the patient”. It isn’t sufficient—in fact I think I’d prefer obnoxious competence to pleasant incompetence in my doctors—but I think it is necessary. A lot of smart and caring people are taking care of Lydia. Most of them are both. We are grateful to them all.

Lydia hospital day 13

Chest X-ray looks good again this morning. That is very cool. Last night she had another spell of low oxygen in the blood when they were trying to suction out her breathing tube, but otherwise she's tolerated being un-paralyzed. She's getting a trickle of tube feeding. Lydia's heart rate is very low, but it doesn't seem to be bothering her blood pressure, so the docs are just watching it and expecting it to improve once the back-pressure on her right heart is lower and they turn down the sedatives.

The plan today is to gradually turn down her inspired oxygen concentration, as tolerated, and tomorrow wean her off the nitric oxide. The hope is she will tolerate that because they recently started her sildenafil, which affects the body's own use of nitric oxide. Those of you who don't know what sildenafil's more common use is and want a chuckle can click here.

Winona is so very excited to see her baby with her eyes (briefly) open! At this moment she's reading Lydia a book that her friend Corinne brought her. I doubt I'll be able to pry Winona away from here for the next week or two. The kids at home are excited for a day off school, excited to check their 72-hour emergency kits, excited to hang out together at home, and of course excited to hear that Lydia can open her eyes and wiggle.

Lydia hospital day 12, note 2

Some good news. Lydia has sustained good oxygenation since the paralytic agent was discontinued this morning. This has allowed them to start cutting back on the ventilator settings a little. She’s opened her eyes briefly a few times in response to noise or a touch. That is pretty exciting. She still looks pretty out of it when she opens her eyes; that’s not a a surprise, with all that sedation. She also had a bowel movement, so the tube feeding rate is being turned back up. (I don’t think I ever expected to be so excited about a dirty diaper.) So we hope this is the start of improvement.

I am continually amazed by how much support Lydia and our family have received. Yesterday at church, many people talked to us and offered to help. While Charissa and I sat with Lydia last evening, we listened to a CD a friend had brought by. A teenager from church baked a peach pie with a pastry “L” for Lydia on top. Today when Winona and I got to the hospital, we met two of our MD friends who had dropped by to see how she was doing. While we were waiting for the team to round, I ate some cookies a friend had dropped off and drank a root beer from another friend. Later Ariana texted me from college to say that her roommates were fasting for Lydia—and she had not even mentioned anything to them about our congregation’s fast. When I got back to her room after trying to work today, I found a gift bag from Lydia’s speech therapy class with things she will like when she is awake. I’m sure I haven’t remembered all of you. It just overwhelms me—in a good way. I want to remember this generosity for years to come. It inspires me at least to want to be more generous. Hopefully I can actually become more generous (“both almost, and altogether”). Thank you again to all of you!

Kevin

Lydia update #15

The good news is, her chest X-ray looks pretty much back to normal today. Well, if you don't count the chest tube. The bad news—if you need more bad news beyond still being in the ICU on a ventilator—is that last night she had another spell of low oxygen saturation (<80%), apparently lasting almost an hour. Makes me second-guess my decision to sleep at home the last couple of nights. Of course, if I'd been here I couldn't have done anything. Also, her GI tract isn't moving much and a slow feeding rate of 25mL/hr (about 2.5 cups a day) was more than she could clear from her stomach. But they'll be restarting the food at a slower rate, and giving her some food intravenously as well. They are turning down the nitric oxide to try to prevent toxicity. We'll see how she tolerates that. She's still at 95% inspired oxygen, nowhere near the 40% or so that would let them think about breathing her by mask. Overall I think I'll focus on the chest X-ray. :)

Oh, I told the nurses, here we get 6 kids through middle school drug free, and now Lydia's using morphine and Versed before she even turns 3. Sigh. You can't win 'em all.

Thank you to all of you who have been expressing love and concern and solidarity.

Kevin

Lydia update #14

Lydia is overall about the same; still very sick, on a ventilator, on 100% O₂. The plan is to wait until she doesn't need the inhaled nitric oxide to keep her blood oxygenated before trying to un-paralyze her. She is getting a little food finally, at this point about 2 cups a day of special high nutrition milk shake type stuff through a tube.

Our congregation at church is fasting for Lydia (see below). For those of you unfamiliar with that practice, you can click on this sentence for information.

To all members of the Webster Groves Ward:

It has been suggested that it might be appropriate for the ward to hold a special fast for Lydia Black.  The Ward Council has discussed this and agrees that it is appropriate.  While such events are quite unusual we believe that the extremity of Lydia's circumstances and the special need for our Heavenly Father to be with her and her family at this time prompt us as a council to invite all members of the Ward to participate in a special fast.  We encourage everyone whose circumstances allow to participate with us and we want to make the blessings of participation available to all who desire them.  

For those who don't know, Lydia Black is currently in the ICU at Children's Hospital where she has been for more than a week fighting a severe lung infection.  ...

There are doubtless many of you who feel as we do, wondering how we can be helpful to the Black family and to Lydia while understanding that we are substantively powerless to provide any but supportive assistance, company and the faith of our prayers.  However, we have faith, as you do, that we can evoke the blessing of our Heavenly Father through prayer and fasting and by approaching him more perfectly with our supplications.

Officially we will fast from dinner tomorrow (Sunday) until dinner Monday.  However, if your circumstances make it easier to fast tonight (Saturday) to tomorrow (Sunday) that would also be appropriate.

Whether you are able to fast or not please remember the Black family and Lydia in your prayers.  It would be appropriate to send this email to anyone who knows the Blacks and would benefit from fasting with us on Lydia's behalf.

Yours,

The Webster Groves Ward Council

Lots of people have been very kind to us. Thank you all. We'll keep you informed.
Kevin

Lydia update #13a

She's getting a chest tube. She has a pleural effusion on the left. That's when fluid collects around the lung. So they put in a tube to suck it out and keep it out. It lets the lung expand more, and it drains one more place that bacteria could grow. Still requiring a lot of O₂.