Saturday, October 31, 2009

Day 8

Thanks again, my friends, for all of your well-wishes.

No change today. Stable is good. He’s still maintaining an oxygen level of 88-93 at 55%. At one point he started losing his stats because a bunch of gunk from his lungs clogged up the tubes. But they were able to suction it up right away.

They’re hoping that it’s all beginning to break up and he’ll be able to start coughing it out.

Litzi’s comment about waiting is true. Or as Tom Petty sang, “The Waiting is the Hardest Part.”

Every minute is an eon, and if Big Kid survives, it’s going to be a long road to recovery.

They say that patience is a virtue, please God help me be a virtuous woman.

The RT specialist who came with the new respirator told us he usually works with sick babies. I told him he was in the right place, because my baby is very sick.

The phone has become my frenemy, like it’s a live thing. I need it to keep in touch with the hospital, but every time it rings, I fear it’s them and that the news is worse. Sometimes I’m so afraid to call and check in that I make my husband do it. I go in the bathroom and run the water so I don’t have to hear the conversation. Then he taps on the door and tells me the update and I cry on his shoulder for being such a coward.

My mom tells me I have to distract myself or I will drive myself insane while we wait. I can’t focus on TV. Medical dramas make me flee the room. Police shows have dead people. The news makes me want to scream, why isn’t my son the headline? I know that’s an inane thought, but if he dies it will be the end of my world as I know it. But we are just little people in a big world, and the world goes on with or without us.

So I read. The first book started out ok, until one of the characters starts getting sick from an undiagnosed infection. Away with that. The next book has kidnapped children. No.

I end up digging out the entire Little House on the Prairie series and reread them again back to back at the hospital. They were childhood favorites where Ma and Pa always took care of their girls and nothing truly evil ever happens.

I never recognized what a selfish sonofabitch Pa Ingalls was until this reading of The Long Winter, though. Not once, but twice he goes down to the Wilder boys feed store and gorges himself on pancakes and bacon with lots of maple syrup. Meanwhile his wife and 4 daughters are down the street, huddled around a stove, grinding kernels of wheat in a hand-held coffee grinder to make enough flour to bake a lousy loaf of bread. What, he couldn’t deny himself a couple of pieces of bacon so they could each have a bite after months of no meat?

Yeah, I distract myself with idle stuff like that.

I want to touch my boy without the gloves. I want to feel his skin. I want him to feel me brush back his hair with my very own hand and not latex. I want to put him back in my womb where he can live without air and I can cradle him with my love and keep him safe. Please, I beg, please let me touch him. Only if you wash your hands before and after, I’m told. I scrub hard, to wash away every last germ.

His feet are so cold. I remember when I could hold them in the palms of my hands and count his perfect little toes. His feet are much bigger now, and not as brand new, but just as dear to me. Flesh of my flesh, bone of my bone.

I place my hands on his chest. Heal, I command his lungs. Heal, damn you. Once my hands could soothe away any booboo, and I want that power again. But I’m afraid this booboo is too big.

So I hold his face in my hands. I sing our special song and whisper in his ear, “Don’t leave. Don’t leave.”

Friday, October 30, 2009

Day 7, Where's There's Life, There's Hope

Thank you again everybody, for all your kind support.

I couldn't write about this yesterday because of the anguish that was choking me up.

On Wednesday, the doctors basically told us that they were giving Big Kid all of the oxygen support that they could. Because of the intense pneumonia infection in the left lung, and the infection in his right lung, if things didn't change post haste, there was nothing more they could do.

They were going to try him on nitrous oxide (yes, laughing gas), in a last-ditch effort to open up his airways.

From our understanding, nitrous is lighter than oxygen, but can carry some oxygen molecules to places where the oxygen was unable to penetrate. Big Kid could only be on it for 48 to 72 hours tops before the nitrous would start to poison him and cause serious permanent damage.

They have to keep moving him from one side to another. Every time they moved him to his left side, Big Kid would turn blue, and they'd have to turn his oxygen level back up to 85% to try to maintain his oxygen saturation level.

This morning at 3am when I called, they said he had a good night. When Hubby called again at 8am, they said he was holding strong.

We were able to get there a couple of hours later (with the big snowstorm, there was a 2-hour delay at school).

When we walked in, Big Kid's nurse told us that there was significant improvement on Big Kid's chest xray, and that he was down to 55% oxygen. The nitrous was working.

I lost it and sobbed for at least 5 minutes.

The goal today was to wean him off the nitrous, and there wasn't much hope that he could maintain without it.

He did. He did it.

By 6pm, they had weaned him off it completely, and he's still at 55% Even on his "bad" side.

Still critical, but getting close to turning the corner.

Where there's life, there's hope.

My boy. My baby boy. You're strong.


Beat this, dammit.

Beat this.

Thursday, October 29, 2009

Day 6

Sorry I didn't write this morning. The panic was so bad that I just didn't have it in me.

Yesterday was pretty grim. We've been hit with a two-day snowstorm, and yesterday my family couldn't make it down to stay with my younger son.

There is no way I'm going to take him down to the hospital with all the sick people. He's in the target age range of the young men in critical condition, and I don't want him near it.

So I stayed home, and Hubby drove down from the mountains to sit with Big Kid.

Kitty, Big Kid's girlfriend, lives in the city and was there before Hubby. Big Kid took a turn for the worse, and the doctor I talked about a post or so ago (brilliant doctor---not-so-brilliant social skills) mistook her for me (his mother) and laid it on her. She wasn't quite able to comprehend what he was saying, except that it was very very bad, and called me in hysterics.

Which of course, set me off. When Hubby got there, he had to calm her down, find the doctor to get information, and calm me down too. Except there wasn't much to be calm about. Bless his heart, he stayed with Big Kid until late into the night until he was stable again.

Anyhoo, we got two feet of snow, the roads are awful, we just got back from spending the day with him, and there's a bit of hope. There is a tiny, tiny improvement in his left lung which has been the worst.

My mantra for today is "Where there's life, there's hope."

Thank you all again for all your thoughts and prayers.

Wednesday, October 28, 2009

Day 5

Another morning, and Big Kid still hanging in there. I can't begin to tell you how touched we've been by all of your comments and well wishes. Thank you so very much.

Kitty, Big Kid's girlfriend, sat with us yesterday. I refused to allow her into his room until she went to the doctor and got a clean bill of health. Maybe that sounds harsh, but since she and Big Kid were sharing space, I was worried not only that she might be ill, but that she might bring something into the ICU. She couldn't get an appointment with her doc for almost a week, so she went to the emergency room and waited three hours until she could be seen. She's ok, thank goodness.

I have to say that sitting vigil with her was a trying experience. Not her fault, she's a very sweet person. But she has some kind of nervous tic that kills the switch that controls her indoor voice. And the more anxious she gets, the more she has to talk.

Every time a new doctor or RT or specialist or whatever came in to talk to me, they couldn't figure out who to address as his mother. I could see their eyes shift back and forth between us, so I'd stick out my hand.

"Hi, I'm Attila. I'm Big Kid's mom."

And Kitty would stick hers out next and blast, "AND I'M KITTY. I'M BIG KID'S GIRLFRIEND!"

Then their eyes would shoot back to me. After about the 4th time, I didn't have a cringe left in me.

gah. For those of you new here, Kitty is 5 years older than I am. Long story, think bad country song, and I'm not going to go into my struggles with this relationship now. I know it's kind of funny when you think about the scenario, and maybe one day we'll look back and laugh, but right now, I'm all out.

Big Kid's temp is now normal, as is his heart rate. They took him off the medication that was keeping his blood pressure up, and he's holding his own there.

Unfortunately, he wasn't able to keep up his oxygen levels at 70% oxygen, and they had to put him back up to 80%.

Two steps forward, one step back.

He was much more active on the new sedation, and was agitated easily. He kept trying to get himself out of bed.

I took Kitty out to lunch, and when we got back, Big Kid's room was full of people. And a new, big, machine that was screaming. People were rushing around, passing tools and tubes and talking in low urgent voices.

I swear to God, I thought he'd crashed. The world just dropped out from underneath me.

As it turns out, the doctor was unhappy with his oxygen maintenance and decided to try him on an oscillating ventilator----one they use for premature babies. Instead of 12 big breaths a minute, it emits 300 small "puffs". It's supposed to be gentler on the lungs, but they have to medically paralyze him to use it. The machine is very loud, and the effect on his body looks somewhat violent.

There wasn't a crisis that precipitated this, it was just something the doctor thought might work better. They had to turn his oxygen up to 100% and it was still at that level when I left a few hours later.

Hubby came shortly after and stayed until late in the night. By the time he got home, they had dialed the oxygen back to 80%. When I called at 3am this morning, he was down to 60%, although he was having trouble maintaining if he was moved.

Small steps. Small miraculous steps. Stable is good. Stable is good.

Thank you again for all of your notes of support and hope.

Tuesday, October 27, 2009

Day 4

All of your comments have been really overwhelming. Thank you so much for taking the time to write and think of us. It's 4:30am again, and while the house sleeps, I'm getting ready to go back down into the city.

We had a large snowstorm on Sunday night, so Hubby and I had to drive into the city together yesterday. Luckily the sun melted it all off the roads, so I'm going to leave soon and spend the morning up there, and Hubby is going to take over in the afternoon.

I have a fear---as irrational as it is---that if we're not there, he's going to get worse. Who am I kidding, right? We're not doctors. We're helpless. But I can't shake it.

They have Big Kid heavily sedated so he won't fight the ventilator and try to breathe on his own. On Sunday he didn't respond to us, although the nurse said that when they lowered the sedation, he was responding appropriately.

When we first got there, his respiratory therapist, who I'll call Frank, was finishing up. He's a cranky no-nonsense cuss, but has been amazingly gentle in working with our son, and amazingly gentle with two semi-hysterical parents. "He had a good night", he told us. "He's still a very sick young man, but he's stable."

We learned that they had been able to dial back his oxygen support to 70%. On Saturday, Big Kid had been on 85%, on Sunday 80%, so this is good, right? They won't be able to take him off the ventilator until he is around 35%, but it's a step forward.

His heart rate was down in a normal range too. On Sunday it was 125. Now it is 79. He's maintaining a temperature of a little over 100.

Baby steps.

Big Kid and I have a silly thing between us. If he's calling to check in, or I'm calling him, and we don't reach each other, we don't leave messages. If everything is going ok, we leave something that is a mixture of ululating and a raspberry.

So Hubby and I gloved and masked up, and when I leaned over him to tell him we were here, it just came out.

Blublublubluablua!

His eyes flew open and he struggled to focus. We're here, Sweetie, I told him and he squeezed my hand.

Baby steps.

Every time we come to his room, Fox News is on the TV. It's not bad, just odd. The sound isn't on, so he isn't aware of it, but Hubby and I wonder who the channel changer is. I moved my chair next to the bed so I could hold his hand, while Hubby flipped through channels---trying to find something that wouldn't warp his twilight dreams if we turned the volume up. We settled on TV land and watched Leave it to Beaver and the Beverly Hillbillies (what were we thinking?).

Hubby and I took a break and went to the family room to get a drink. Those masks really dry your throat up. He went off down the hall to make some business calls and I sat on the couch and closed my eyes.

A few minutes later, a small woman came and wordlessly dropped into the chair next to me. In moments she started rocking back and forth and keening. "Oh God, save her! Save my baby! Please God!" Then she started praying in Spanish.

I got her some kleenexes (short supply in the family room) and asked her if I could get her something to drink. She told me that her daughter, who has lupus, recently had a baby and her kidneys had completely failed. She and her husband and children had driven in at 3am from a town which is several hours away.

We held hands and cried together. Two mommies terrified for our babies.

Later the doctor who is on this week came out to update us. He sat in a chair opposite and just looked at us. "How is he doing?" Hubby finally asked.

"He isn't any better." the doctor said flatly.

I felt like he had reached in and ripped my guts out. What?? What are you talking about?

"Well what is his prognosis?" Hubby asked. I wanted to reach out and clap my hand over his mouth.

"It's bad," the doctor said.

But what about his temperature, and his blood pressure, and the oxygen levels? I blabbered. He was at 85andnowheisat70andthathastobegoodright?

"It won't mean much until he is under 50".

I started to cry. Again. "Can't you give us something? Something to hang our hope on?"

We were stunned. Later Hubby said that he sure hoped this doctor is some kind of medical genius, because his bedside manner sucks. I leaned my head against him and said, "go kick his ass for making your wife cry."

"You want me to?" My hero. He's my hero.

Late in the afternoon, I leaned over Big Kid and touched his face. "We're leaving now, but we'll be back soon."

His eyes flew open again and he tried to talk. He started getting agitated. "Do you want us to stay?" I asked, and he nodded his head. The nurse gave him some more sedatives so he wouldn't fight the ventilator, and we held his hands until he went back to sleep.

I didn't mean to go on for so long, but once I started, it keeps pouring out.

Critical, but stable. Stable is good. Stable is good.

Thanks again for all your words of support and love.

Sunday, October 25, 2009

Update...

Thank you all so much for all your kind words and prayers.

I have been a half of an inch away from absolute hysteria for the past two days.

He's a strong young man. He's a strong young man. I have to keep telling myself that.

Now that we're home and not at the hospital, each time the phone rings, my heart jumps into my throat in case it's the hospital saying he's worse. Or worse than worse.

He's a strong young man. He's a strong young man.

Another young man from our town was down in the city in the same ICU unit. They had to remove part of one of his lungs. We passed his parents and sister in the elevator, and I thought---OMG, I know them. Typically, the daughter was one of the passel of girls who had been calling the house when The Happening Dude first came to be with us.

Another strong young man.

Our boy had a bad night. The xray on his left lung showed that it was worse. They switched him to another type of ventilator to give him more support. Unfortunately, they had to sedate him more, so I don't know if he even knew we were with him all day. Yesterday, he was able to squeeze my hand. Today he wasn't.

The good news is that his fever was down from 104 to 100. His heart rate was down to a better level as well. The Xrays showed that his heart was enlarged, but it was a portable Xray machine, so they weren't positive. An echocardiogram showed that it wasn't and there wasn't fluid around his heart either, which is what they were fearing. His blood pressure bottomed out after he was admitted, and they've been keeping it up with fluids and medication.

He's a strong young man. He's a strong young man.

His kidneys are working fine. His blood gases were very good today. He has color in his face, which is hopeful. He's on three strong antibiotics.

He's not breathing on his own, but the machines are keeping his oxygen levels where they should be. He just needs time to maintain and heal.

He's a strong young man.

I debated about whether or not to write about this, but there is a scream---a violent, overwhelming, primal scream---trapped in my chest. It's so big that I don't think it will fit through my throat or my mouth without tearing me apart from the inside out. This is something that we never imagined would happen to us, no matter what we saw on the TV, because the kid really just never goes anywhere. Or hasn't in the last couple of weeks.

We thought it was JUST A COLD----on Tuesday we bought him cold medicine and he said he was feeling better, and three days later---it just happened SO FAST!

The doctor said that the virus can live up to 5 hours on surfaces such as steel, like on shopping carts and things like that.

Be vigilant. Wash your hands. Carry sanitizing wipes or gel or whatever you can get your hands on, and wipe down public surfaces before you touch them. This flu is truly a raging inferno that is attacking our young people with an insatiable hunger.

My boy, my precious boy...

Thank you again for all of your kind wishes and prayers, my friends. Please keep them coming.

He's a strong young man. Please pray that he is strong enough.

Prayers

It's 4:30 A.M., and I'm getting ready to go back into the city.

Big Kid had a cold earlier this week, I bought him some cold medicine, and he said he was feeling better.

His girlfriend found him unresponsive when she came home from work the night before last.

He's in septic shock and respitory failure due to complications from H1N1. He has pneumonia in both lungs and is on a ventilator.

The only places he's been in the last two weeks is our house, the grocery store, and out to dinner one night. The doctor said there are 10 young people in his unit with the same thing. It's extremely virilent.

We thought it was just a freaking cold, dammit!

If your child has a cold, or flu-like symptoms, take him or her to the doctor right away. And again, and again, if you have to.

Please send prayers and healing thoughts to our boy.

Sunday, October 04, 2009

Real Men Don't Speak Armani

Sorry I've been MIA, but my old monitor went to the place where dead monitors go. Then of course, we had to do some comparison shopping down in the big city, and dang, who has the time?

Being computerless, I was able to catch up on all the shows I DVR'd. The commercial campaign for Giorgio Armani's new fragrance Idole just stuck in my brain. Have you seen it?

Some sappy disembodied male voice drools all over a vacuous model who replies with vague (I think they were trying for enigmatic) statements that make no sense at all.

Who the f*ck talks like that? Seriously?

I watched it with Hubby and said, "Just out of curiosity, how come you never say things like that to me?"

He looked at me like I had just sprouted a third foot. On my head.

"Uh---real men don't speak Armani."

And he's right. In our house, the conversation would probably go like this:

Hubby (As Armani Guy): I have been searching all my life for a woman like you!
Me: You mean a woman who admires your unique ability to snore and fart at the same time?

Hubby: You fascinate me.
Me: No. I will never be drunk enough to do that thing with the handcuffs and the big hairbrush ever again. Stop asking. I mean it.
Italic
Hubby: You are my idol.
Me: Yeah, Buddy. Get your idol some iced tea.

Tres sexy, no? LOL