Almost There

When I came in this morning, the flow-pap was gone. After bath this morning, my baby girl’s cheeks are kissable again– IOW, not covered with tape and second skin and tubing. She has figured out that if she fingers her IV tubes and starts tugging, Mommy will pay lots of attention to her. Yee-haw. (Remember that this is no ordinary IV; it’s in the jugular vein!)

However, they’ve slowed the weaning of the blood pressure meds to every 12 hours, so now it’s mid-afternoon tomorrow before she’ll be off all her meds, and sometime after that before we get to leave the ICU. But Christian’s boss is back and gave him tomorrow and Friday off, so that will ease the stress. As does Meghan, our respite provider, who is sitting with Julianna outside of her finals schedule. And tomorrow night Christian and I are going out on a date.

It seems horrible to me to do such a thing. I think of my parents, who virtually never went out on dates, and I keep fearing that we will be judged for abandoning our children in a time of need. And yet the spousal relationship is first in the family–the origin of the children and thus, the most important. The transition period, caring for three while juggling everyday life, had already left us hanging on to connection by a thread. We expected the transition to be tough, and we had been living with our nose to the grindstone, barreling through as best we could and waiting for the craziness to settle into routine. It was starting to happen, too…and then Julianna went into the hospital.

Since then, what little conversation we’ve had has been logistics and progress reports; touch is nearly nonexistent, in any form. For a time, a marriage can handle that without negative effects, but for us, at least, that time is now past. So we’re going out, despite my uncomfortable sense that couples have survived far worse without thinking they have to go out on dates. Oh well. Count it as another blessing and get on with it already, Kate. Sheesh.

Published in: on May 13, 2009 at 12:10 pm  Comments (1)  
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Quickly

Yesterday, Julianna continued to scream at me all afternoon, refusing to sleep even though her little eyes kept rolling up into her head with exhaustion. (The nurses think it may be withdrawal from the monster doses of sedatives she was on.) It was annoying, but nonetheless, good news, because she had the energy to sit up and gripe. And it was all a show for Mommy’s benefit, obviously, b/c after I left for dinner, she stopped screaming and sat in her crib and played, and waved at her royal subjects whenever they stood outside her room.

Today the screaming soon stopped being so cute and instead began to shred my nerves, which is, of course, her intent. Like me at the doctor’s office last Monday, she’s trying to see if she can cause enough misery in her captors that they’ll let her go. If only it worked that way, honey. No, she has to stay in her ICU crib until she’s weaned from her blood pressure meds and her oxygen support has been significantly diminished–Thursday at least. Then we spend some unspecified amount of time out on the main floor before we finally get to go home. Well, that’s the breaks. At least I get to take her home. Someday.

I have not posted till this evening b/c  between the two of them–Julianna and Nicholas–I couldn’t sit at the computer long enough to accomplish anything. It kept shutting down on me. Hospital productivity is done.

Published in: on May 12, 2009 at 7:25 pm  Comments (1)  

Looking Up…tentatively

Julianna spent the entire morning screaming. Those who have ever heard her get mad at her brother know the sound I’m talking about. She did not take a break from the time I got here until after 1p.m., except for ten minutes when I think  she actually slept. Just one breath after another, AAAAEEEEHH! It wasn’t as bad as it sounds, because the torture device, pardon me, the bi-pap, muffled them almost completely. (If that tells you anything about this horrible invention.) Her heart & respiratory rates were sky-high. But it was an improvement nonetheless b/c it was MAD screams, not panicked screams like yesterday. However, mad turned to panic every time we messed with her death mask, excuse me bi-pap. The usual masks wouldn’t fit her head, so they put this hard rubber thing on her, with hard rubber straps that, by this morning, had caused a lesion on her left cheek from all the thrashing, and were well on the way to putting another on her right cheek. This despite the second-skin stuff they put underneath it to try to cushion her skin.

The X rays indicate that the pneumonia is more or less off the radar now, meaning it’s not really the issue; the issue now is viral, they think–it’s affecting her heart, which is not pumping hard enough, so fluid is backing up into her lungs. This means they have to keep her air support under pressure, so that the pressure in her lungs is sufficient to force the fluid out. Hence the bi-pap–that’s what it does; it seals around the nose & mouth  and forces the air in.

Anyway, all of this is simply to illustrate where we WERE, versus where we now ARE. I’ve spent little time online today b/c I’ve been caring for kids, and that’s probably a good sign. I had to push for some sort of cushion on the rubber straps, to protect her poor beautiful face, and I pushed for some sort of change in the regimen, because I was sure she wasn’t going to get better as long as she was screaming instead of resting.

Dr. Downs came in and we talked about options, and he called in Dr. Burny, who of course treated her all last week, and between the two of them they decided to take the bi-pap off again, and again, see how she did. And by now it was critical for her to have some food, b/c the feeding tube came out three days ago and she’s had nothing but a spoonful of jello since then.

That was two hours ago. She’s starting now to get agitated, but her numbers look pretty good, actually, so it’s hard to say whether she’s headed for respiratory distress again, or if she’s just pissy because she’s starting to feel just enough better that she can make everyone else miserable. :) She’s been signing “all done” all afternoon. The nurse said, “Maybe she just wants to make sure we know she’s done with the mask.” I second that…especially after she yanked out her flow-pap (the nose things) and signed “all done!”

We brought in water and ice cream at the same time. Practical Mommy, caregiver, had the water and got roundly rebuffed, while she lunged for Daddy, who naturally chose to carry the ice cream. Hmph. But Mommy redeemed herself later on by bringing cheddar cheese. :)

Her blood pressure dropped quite a bit last hour but now is coming back up, so for now, things look good. We continue to be profoundly grateful to you all, even though I guarantee we will never get thank you notes out. Sorry!

Published in: on May 11, 2009 at 3:15 pm  Leave a Comment  

The Hospital Blues

My van smells like the hospital, my clothes do too,
Haven’t slept with my hubby in what seems a week or two,
Been sittin’ in the same chair so long, I think my butt’s turnin’ blue
Twiddlin’ my thumbs and singin’ the hospital blues.

My baby’s bored from sittin’ all day in the P-ICU,
My toddler’s screamin’ bloody murder But whatcha gonna do?
She’s gotta wear the ?*#@!! mask if she’s ever gonna improve
Twiddlin’ my thumbs and singin’ the hospital blues.

Sorry, folks, I was hoping for a third verse but I’m all out of clever wit. Christian can add a verse tonight, I’m sure. :)

Published in: on May 11, 2009 at 9:43 am  Comments (3)  

Skewered on my own eloquence

Three weeks ago (has it been so long already?), I gave a retreat presentation on music and spirituality. During it, I spoke of music as a way to help us express the whole range of human emotion—both positive and negative—in a prayerful way. The example I used was “Hold Me, Jesus,” by Rich Mullins.

It’s a great example of praying through pain and difficulty. The trouble is that, like everyone else, I’m more willing to philosophize about it, in the abstract or after the fact, than to embrace it when it smacks me upside the head. This morning, Mass felt like God knocking on my head saying, “Hello? Kate? Are you listening? Every branch that bears fruit, I prune so that it bears more fruit.”

Well, God, I feel the pruning shears, but I’ve got to be honest, I’m not grateful. Not yet, anyway. The way I see it, you keep piling things up till I think I can’t possibly hold any more. Why now, just when we thought we were coming to the end of the worst busy-ness and stress? In the middle of planting season and the end of legislative session, so my parents can’t come, and right around that storm that tore the heck out of Southern Illinois, so Christian’s parents can’t come? When there’s a reception after work on Monday, so Christian has to stay late? When it’s the end of the school year, so we’re feeling pressured to figure out how to have lessons, so we can actually have recital on Friday?

Every night, I go home and spend the entire time making phone calls figuring out what to do with Alex the next day. I have to shunt him from one place to another. Not that I’m ungrateful for the help, mind you, but I feel like I’m neglecting him. Okay, let’s be honest, I am neglecting him. It’s the nature of the beast. Right now, there are two other kids who need me more, and that’s just how it goes. But it’s one thing for it to last a couple of days. A couple of weeks at the bottom of the totem pole? This can’t be good for him. And I am sick and tired of not being able to spend time with my husband! What a sucky Mother’s Day! And what the heck is up with this gorgeous weather that I can’t enjoy because I’m stuck in the PICU?  And why does Nicholas have to pick this time to decide he just doesn’t care to eat?

Condensed like that, it just sounds whiny­—even to me. I should be grateful that Julianna’s not fighting for her very life; that we have such great friends and family who are inconveniencing themselves to help us; that I have a husband who will sleep in the PICU so I can sleep at home with Nicholas… But I keep staring down the barrel of another week in the hospital, knowing that homecoming is not going to mean the end of the hospitalization-related stress. However well-behaved Alex is now, there’s going to be a backlash later.

In this context, the song is all the more apropos. At least I can admit it, even if I’m not ready to pray it.

Hold Me, Jesus/Rich Mullins

Sometimes my life just don’t make sense at all
When the mountains look so big and my faith just seems so small. 

Hold me, Jesus, ’cuz I’m shakin’ like a leaf
You have been king of my glory; won’t you be my prince of peace?

And I wake up in the night and feel the dark
It’s so hot inside my soul, I swear there must be blisters on my heart

Hold me, Jesus, ’cuz I’m shakin’ like a leaf
You have been king of my glory; won’t you be my prince of peace?

Surrender don’t come natural to me.
I’d rather fight you for something I don’t really want
Than take what you give that I need.
And I’ve beat my head against so many walls,
I’m fallin’ down, I’m fallin’ on my knees.
And the salvation army band’s playin’ this hymn,
And your grace rings out so deep, makes my resistance seem so thin

Hold me, Jesus, ’cuz I’m shakin’ like a leaf
You have been king of my glory; won’t you be my prince of peace?

***

Christian tells me I need to update. Let me add to the story of the medieval torture device. It’s actually a “bi-pap” not a “c-pap,” and I was here during the spiral down into chaos that ended in the mask being strapped around her head. It looks like a Hannibal Lecter thing. Literally. And Julianna took it as such. I was sitting on the PICU crib, lying across her legs, holding her hands down, while she shrieked in panic and hurled her head around, trying to escape. I kept asking the RT (respiratory tech) if I was in the way, and she said “No, you’re doing fine.” That is, until I became vaguely aware that there were people all around me. “Should I get out of the way?” I asked again, and this time someone said, “Yeah, why don’t you step out for a minute?” It wasn’t till I stepped back that I saw there were six people working on my daughter. A crowd in an ICU room is a bad sign. I freaked out. A few minutes later I was crying.

This morning after Mass, when I came into the room, she was just waking up. The staff was preoccupied with a screaming patient next door, so when the noise woke Julianna, I was flying solo to try to calm her down. She fought the mask, she thrashed and panicked some more, I soothed her to sleep, she woke up and we repeated the procedure. And then she put her arms out to me. I started to gather her up, but the tubing and joint on a bi-pap are much less secure than I realized, and suddenly this pressurized thing fell apart. Sensing imminent victory, Julianna threw her whole body into the fight. And won. Dr. Downs came in (yes, ironic as it is, that is his name) and removed the bi-pap. So now we’re back to the forks in her nose (I’m sorry, as much as my medical vocab is expanding, I haven’t got that one in my head yet, it starts with a C and sounds like Calendula, but I can’t get the whole thing right). And now we’re waiting for her breathing rate to slow down so we can start giving her food.

Dr. Downs came in a while ago and leaned on the crib rail, studying her and the numbers. Then he said, “Little girl, you’re just gonna keep limping along till you feel better.”

That about sums it up.

Update as of 3:45 p.m. We’re back on the bi-pap, and talking re-intubation. The staff thinks we extubated too soon.

Published in: on May 10, 2009 at 12:55 pm  Comments (2)  
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The hospital is in E flat major

It’s odd that I don’t write much about music, considering that my degrees are in music and that music has been the focus of all my education, and the only activity in which I participated significantly, ever. Music defined my entire existence for about 7 years after high school.  

I always had a good sense of pitch, and before I graduated HS I could tell you what note was being played–as long as it was on the flute. Different notes have different tone qualities on the flute, and I knew what they were. C# is exceptionally fuzzy and bright, the B-flat tuning pitch is kind of shrill and whiny, that kind of thing. In college that developed into relative pitch. These days I have what I call “imperfect pitch” because I’m not 100%…but basically it’s learned perfect pitch. People who learn perfect pitch do so by learning to recognize the tone quality implicit in the pitch level, not just in one instrument but in general. That’s more or less what I do.

Anyway, I don’t talk about music much online, but it is implicit in my life. No doubt some of you will roll your eyes when I tell you that I’ve spent this PICU stay humming and identifying the pitches of the various alert bells.

Heart beep: E-flat
Monitor alarm: G
All clear: D

Poor little Julianna is restless today. I made them give her something to help her sleep this morning, because she was hurling herself around on the crib, incapable of settling down. The oxygen tube, the 5 or 6 joints coming off the IV on her neck, the various plastic tubes, kept getting stuck behind her back.  Even now, in her sleep, she tosses her head back and forth with tiny grunts. I got permission to hold her, but she didn’t tolerate that very long. It did help calm her down, at least. I tried to give her water but she wants nothing to do with it. I can’t help thinking she’s very weak and she needs some calories. That’s how I felt after Nicholas was born. They had me on fluids and sugar through the IV, but it’s not the same as eating and drinking. You never knew broth made from chicken bouillion could taste so good.

Anyway, that’s where we are this morning. If I get ambitious (and my children let me), I’ll write on a non-hospital subject later.

Published in: on May 9, 2009 at 10:27 am  Leave a Comment  
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Friday morning update

Well, we have the tube out of Julianna’s throat. And while he was at it, Dr. Burny also removed the NG tube (nasal-gastric) and the feeding tube, knowing that as soon as she wakes up, she’ll be ripping them out anyway. :)

Her numbers really didn’t justify coming off the ventilator, not quite anyway. But the trouble is this: as long as she’s deeply sedated, she needs virtually no respiratory support. Every time they started to wean her from sedation, however, she’d start fighting and they’d have to turn the numbers back up. So he decided to just try taking her off, thinking that it’s her thrashing and fighting the tubing that is causing her to need extra support. So we’re on a trial run right now.  She’s breathing far, far too quickly, but the rate has dropped a bit, at least. She was taking 120 breaths a minute and now she’s down around 90, so that’s an improvement, even if it is still 2-3 times higher than it should be.

The cultures came back and she has strep…uh…well, some sort of strep something bug that causes pneumonia. For what that’s worth.

Everyone has offered help, and we really want to take you up on it; we’re just trying to figure out what we can ask for. Prayers, obviously, go without saying. Someone’s offered to mow our lawn, which is great, and someone else is bringing Christian dinner at the hospital tonight. Those who are local and feel that Julianna knows them could help by sitting with her in the hospital for a couple hours, so Christian and I can spend some time with Alex and get our own house clean. We have a week’s worth of dishes piled up on the cabinet…which, since we’ve been at work and the hospital all week, is not as much as it would be on a normal week, but it’s still disgusting.

Anyway, I’d like to echo Christian’s “THANK YOU” from last night. You all are Christ in action to us. I’d also like to ask you to pray for a 5-week-old baby with RSV, whose survival is in question. I can’t imagine losing a child, so please join me in praying for this family and this child. God, please give her back to her family, as You gave Julianna back to us when she was in the same situation at the same age.

P.S.–as of noon, the doctor says we’re not leaving the ICU till after the weekend, so we’re still going to be in the hospital next work week.

Published in: on May 8, 2009 at 9:51 am  Comments (2)  

Daily Update…

It turns out that croup is secondary. Julianna has pneumonia. But they tell us that this is a matter for concern, but nothing to lose sleep over.

Julianna is a medication hog. They have upped the Versed  twice, added a regular infusion of Fentanyl, and topped it of with a drug I can barely spell, let alone pronounce. While this would knock out the average child for hours, the effect on Julianna is somewhat more prosaic. It makes her sleepy enough that IF you don’t talk, and you turn off all the lights, and you don’t touch her or mess with any of the twenty-six lines coming out of her (that’s an exaggeration BTW), she’ll lie still, most of the time.

Nonetheless, this morning she managed to wiggle her arms out of their arm restraints, and it takes a fair amount of convincing to get her to close her eyes. She wants to stare through little slits and keep an eye on everything. She takes one flexible leg and stretches it straight up in the air so the little red pulsox light glows like a radio tower, while the other foot pushes lazily against the crib rail. And a minute ago she made a valiant effort to extubate herself, using only the blunt surface of the arm brace! We’re playing Enya to try to keep her calm.

It looks like we’ll be in the hospital for several more days. This is a pain in the rear, but OTOH, I have to admit that I get a lot of writing done when I sit in the PICU. (Which, for the blessedly uninitiated, is pronounced pick-you, not P-I-C-U) Maybe my mother’s day gift will be to have all my kids at home at bedtime.

But it’s time to shift focus. So I close out this post and prepare to talk about something different. After I do an online submission. Between holding down my daughter so she doesn’t thrash out of her tubing and nursing Nicholas. Stay tuned.

Published in: on May 6, 2009 at 12:45 pm  Leave a Comment  
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PICU, how I have missed thee…or not

Overnight, Julianna lost her IV and did not sleep. By this morning, she was just about exhausted. I realize now how much I overuse that word. Exhausted…all energy gone, not in the sense that we use it, meaning “I want a nap,” but in the sense that she is out of gas; she physically cannot muster the energy to draw breath anymore.

They put her on the ventilator early this morning, and then called in the doctor to put an IV in her jugular vein. (At least, I think that’s what they said. They weren’t talking to me, and there was this discussion of “internal” versus “external” which I didn’t understand.) So today I have been watching the nurses pull blood out of her neck into a syringe containing saline solution, and then, after doing whatever they’re doing, gently putting it back in.

 I got teary-eyed this morning seeing Julianna with a tube taped over her mouth again, but not panicky. Unfortunately (or fortunately, depending on your POV), I’ve been down this road twice before. I just hoped we were done with it, that’s all.

 She was exhibiting her usual resistance to sedation. All morning, every time they touched her, her big eyes popped open. It was a little unsettling; the irises looked bigger, somehow. But I think it’s just because they were so lifeless. I’m used to that fire in her eyes, that spark of mischief. Even yesterday, when she was feeling so bad, she could practically speak a language with her eyes. She was pleading with me: Mommy, please make it better. Please. Heart-wrenching.

 Well, anyway. They upped all the sedation levels and at last she settled down. Nicholas and I have been sitting in the corner most of the day, but soon we have to go pick up Alex and get home for a while.

 Yesterday was a rough day for Alex. The whole day in a nutshell was: clean room, run boring errands, sit in a doctor’s office (morning). Eat lunch, take nap, get rudely awakened and rushed into the car again, to spend two hours in the ER (afternoon). Then home and bed.

Nicholas, however, is the star of the hour. The ICU doctor just took him right out of my arms. “I keep telling my son it’s time for grandchildren,” he said, staring down at Nicholas, who thought his wild pepper and salt beard was the most interesting thing he’s ever seen. And then, “May I take him on rounds?” And out the door he walked!

In the two years since my initiation into the world of the PICU, I have learned a lot. This morning I called my parents to tell them about the ventilator. “They had to intubate,” I told them. It wasn’t till two hours later that the irony struck me: it was just two years ago when I wrote about medical personnel using words like “intubate.”

And I finally understand why the doctors all freak out any time Julianna walks through their door. All this time I’ve thought, rather uncharitably, I confess, that it was an insidious form of bigotry. Turns out that hypotonia (low muscle tone) applies in the throat area as well as in the legs and torso. Her windpipe is “floppy,” and smaller than normal, anyway. So any time she gets basic respiratory distress, it’s far worse than it would be for a child without Down’s.

 The house is very quiet without Julianna, and rousing, feeding and dressing two boys is far easier than rousing, feeding and dressing two boys and Julianna. Much more than the loss of one would indicate. Hopefully we’ll all be home again soon.

Published in: on May 5, 2009 at 5:32 pm  Comments (1)  
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I Want My Mommy!

There are mothers out there who don’t want anyone’s opinion, ever. Mom, butt out. Grandma, take a hike. You had your turn, now it’s mine.

I am not one of those mothers. But I’ll bet even they sometimes want nothing more than to run to their own mommy.

Over the weekend, Julianna resumed waking up during the night, and Nicholas was clingy enough that I suspected he wasn’t feeling well. Last night when Julianna woke up crying, I knew right away that it was different from all the cries that have been driving me crazy these last few weeks. There was a low, hoarse note to it that told me we were being rerouted into the land of upper respiratory distress again—a destination we’ve visited three times in her two years, and two of them landed us in the hospital.

But I couldn’t go to her because Nicholas was belly-to-belly with me. That is the only way we can get him to go to sleep some nights, and last night he just would not stay asleep unless he was facedown on my chest. So I woke Christian and sent him in to Julianna. Shortly he came back for his pillow and moved into her room for the night.

This morning, every breath was a wheeze and every laugh sounded like a seal, but she was cheery and energetic and giggly—totally herself. I called for a doctor’s appointment just as a precaution. But by the time we made it to the office, bright and cheery had gone the way of the dodo, to be replaced by miserable, slobbery, and—by the time we left the doctor’s office (nearly two hours later, I might add—who do these doctors think they are? That kind of rotten service warrants a free meal at any restaurant; why do doctors get paid exorbitant amounts no matter how bad their customer service is?)—she almost had no voice left at all, she’d been crying so long and so hard.

Three children, two hours, one examining room. A sick toddler, a hungry newborn, and a bored preschooler. So bored that he was twisting himself in the curtain and leaning over Nicholas, imitating his every cry. I thought about opening the door and moving the whole party into the hallway so the staff would have to share in my torment, in the hopes that it might spur them to slightly more timely service.

And then the resident simply told me to give Julianna albuterol every four hours, and come back tomorrow.

“COME BACK WHAT??????????? ARE YOU OUT OF YOUR FREAKING MIND??????????”

No, I didn’t say it. But then, she didn’t give me the chance, either; she was already on to “and if it gets worse, go to the emergency room,” which took the wind out of my already deflated sails.

Three guesses where we ended up this afternoon. Hint: not Disneyland.

We made it from December 2007 to May 4, 2009 without a hospital admission, but our streak is broken. Tonight, Julianna is in the P-ICU again. For croup, this time.

Do you ever wonder why you bother going to see a doctor in the first place?

I spent this entire wretched day racking my brain for someone I could call for help. Christian narrowly escaped being ordered to drop everything and get his butt home. My next thought was, Mom? Can Mom tell me anything about how to handle this by myself? Surely she had a sick toddler and a hungry newborn at the same time at some point.

In the end, I talked myself out of calling anyone at all, but only because I knew that what I really want is for someone to take over my job…and that’s hardly an option, is it? Or at least, I want a list that goes point A, followed by B, followed by C, covers all contingencies, and has a 100% certainty of producing the desired result. Yeah…right.

So instead, I just sent some silent screams heavenward, begging frantically for one child or the other to calm down without my help. And then I began racking my brain for solutions to the problem, that being: two children who both genuinely need to be held and comforted constantly, yet who cannot occupy the same space, for fear of the 6 ½-week-old baby catching what the 2-y-o has. What I ended up doing was assessing which of them had the greatest need at any given moment, and let the other one cry. Nicholas needs to eat? He gets held. Nicholas is just wanting comfort? Tough luck, Julianna needs me more. It’s like Solomon cutting the baby in half. How do you choose? How do I ignore the newborn, who doesn’t understand what’s going on? How do I ignore Julianna, who is so scared that she can’t get to sleep for panicking with every insufficient breath?

Christian was waiting for us when we reached the ER, and that eased things considerably.

When we dream of having children, these are not the moments we envision. But we know they’re implicit in the experience. What is not implicit is the circumstances that make things harder…like a two hour wait in the doctor’s office. Circumstances tend to ratchet our expectations up or down. Right now, I’d be happy if they could get an IV started, because I know she’s desperately dehydrated. :(

Published in: on May 4, 2009 at 9:04 pm  Comments (5)  
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