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.

49 comments:

Hilary said...

My heart goes out to your and yours. I continue to send my best, healing thoughts your son's way. Soon, your son will kick that doctor's ass. ;)

Clippy Mat said...

stay strong. You are doing an amazing job and he knows you are on his side. Sending you love and support. Hoping he turns the corner today. :-)

Kim Ayres said...

((hugs)) ((hugs)) and more ((hugs))

Willoughby said...

Some doctors shouldn't be allowed to talk to patients and their families. I hope today is the day things start to get better so your son can kick the doctor's ass himself.

Prayers, well wishes and hugs to you and your family. Hang in there, he's a strong young man.

Beth said...

I know you’re terrified and I would be too but focus on the positives – he knows you’re there, he is stable and certain medical signs are improving.
Still and always thinking of you all & praying.

Litzi said...

>:D< abound...

Rootietoot said...

Stable is very good. The doctor was covering his ass, so that in the unlikely event BK destablized, he wouldn't take the blame. What a jerk. Willougby is right- some doctors shouldn't be allowed to see families.

baby steps. Listen to the therapist and the nurses, they're the ones who deal with this intimately.

Stable is very good. (((hugs)))

Selma said...

Stable is very good. Very good.
More prayers coming your way.

Sarah said...

Keep strong- Prayers have been sent

Tiffin said...

The prayer wheel won't stop spinning here until your lad gets under that magic 50 mark. You are absolutely right: he needs to know you are there and you need to be there. You are that light he's fighting towards. So keep touching him, giving the ululating raspberries, pulling him back to you.
Big hug!

Karen said...

Prayers and hugs to your boy, you, and all your family.

Joanna Jenkins said...

I wish I could wrap my arms around all of you during this very difficult time.

Sending prayers and love and support for a full and complete recovery.

You are so strong and so is BIg Kid.

Stable is good.

xoxoxox

Frau said...

Oh! sweetie he is in my prayers Big kid is gonna make it. Hang in there and hugs coming your way.

Charlie said...

The Big Kid, you, and your family are constantly on our minds, along with huge doses of hope. Not to mention our love.

greeneyedmom said...

First time I read your blog, VERY SCARY! Praying for Big Kid.

Cloudy said...

I have been thinking of you and your family all night. You are absolutely the nicest most caring person I "know" & it just makes me sob that you are dealing with something so scary. Sending a constant stream of good thoughts & prayers: he is going to be ok, he is going to be ok, heisgoingtobeokheisgoingtobeok!!!

koonsmother said...

I don't know you, even in the loosest internet sense, and came here because dear old Charlie Callahan asked me to. Your posts bring tears to my eyes. I've been through a critical illness with my own "Big Kid" (my only kid). I know what the fear does to you. Whoever said it's the nurses and therapists who really have a read on what's going on with your son is absolutely right. Doctors often remove themselves too far -- they treat the disease, not the person, and it dulls their perception of the family's pain. I'm squeezing your hand, in virtual support. Keep those positive thoughts uppermost.

Ashley's Mom said...

Stable is good - just keep believing. I'm praying constantly for Big Kid, and for you and the rest of your family. Just keep talking to him and touching him - I'll bet that's exactly what he needs...

St Jude said...

Sweetie, I so wish that I could hug you right now and if this is your way of getting through this then keep 'talking', we are all listening. xoxoxo

LB @Wait, She Said What? said...

That doctor was much too harsh, clearly he has lost his personal touch. If he ever had it.

You know he has improved, you have proof right in front of you. His heart rate is down to a normal range, he's down to 70% in just a couple days and his fever is down some. He's improving! It may be slow and only in tiny baby steps, but it's still something. Most importantly he knows you're by his side.

He's stable. He's getting small improvements and he's aware of you. You have to hold onto the positive things. Talk to him even if he's heavily sedated. Just talk. Even if it's about the clouds or someone shoes. It doesn't matter the topic, just talk to him. That way he can hold onto your voice.

You still have my prayers! Your Big Kid has a lot of people praying for him. That's a lot of hearts and voices rising together for his recovery. Maybe tell him that too.

Anonymous said...

Thinking about you. Hang in there, everything will be alright. I'm sure.

Sara

amy said...

My heart is in my throat. My thoughts are with you and your Kids. <3

Eva Gallant said...

My heart goes out to you. He will get better. He must. What else can he do in the face of so much love?

SuperBee said...

You have my prayers, and my positive vibes. I'm pulling for your son to kick this beast's ass.

Alison said...

I have 'found' you through Joanna Jenkins. I am sending all my heartfelt love to you from New Zealand, and it's spring here - season of hope and new life! I am thinking of you. x

TechnoBabe said...

Darn it. I know I don't know you and I just found your blog a couple days ago when Joanna sent me here, but I so much feel your desperation and fear and know how much you love your son. Darn it.

Chris H said...

You know I just put on my mascara eh? Cos I darn well cried and ruined it all!
I have a good feeling about your son... he is a fighter and is gunna be OK ... everyone willing!
Some doctors should keep their bloody mouths closed.

Joanie M said...

Oh my goodness! Prayer and more prayers coming for the big kid! I love that he responded to your raspberry. You just keep on giving them to him!

Joanie M said...

and that "doctor" needs a kick in the teeth.

Joanie M said...
This comment has been removed by the author.
Joanne said...

Your family is in my thoughts all the time. I want you to know that he will do well - too many doctors just deal with numbers and forget about how strong the human spirit is. I truly (truly) know what you are going through and will be checking back in to watch for the happy ending that I know will be posted in your blog!!!

Big HUGS to all of you!!!

Cheri @ Blog This Mom! said...

Keeping you in prayer.

yorksnbeans said...

I continue to pray.....

Jeanie said...

So many good thoughts and prayers coming your way! He knows you are there and that is so good for both of you. Stable is good.

Anonymous said...

There are tears in my eyes and Im at work. I work in an art school with lots of kids the same age as your dear boy. I had no idea this flu is so powerful.

Chicago Mom said...

You and your family are in my prayers! Stable is good!

Heather said...

{{{hugs}}}
All of your family are in my prayers. As others have said, listen to the nurses. They know the real story. As someone who survived some pretty scary brain surgery, I can say from experience, they know much better what is going on. {{hugs}}

Mary Fran said...

Praying for you and Big Kid.

smiles4u said...

I am still praying for your son and you and your husband as I can only imagine how hard it is to watch this all happening. Thankful to hear that he is stable and look forward to his full recovery.

Debbie said...

The Lord said that where two or more are gathered together in His name that He would be there also. So I'm agreeing with you in the Lord's name that your son will be completely healed. You are all in my private prayers, also.

Star said...

Most definately, stable is good.

Green Girl in Wisconsin said...

Still praying for you all. Stable is good. Get rest.

Kikilia said...

Praying for you and yours. Stable is good.

Hope your other kids are doing okay with this too.

And yes, you need to be with BK. He'll do much better knowing you're there to take care of things for him.

Green-Eyed Momster said...

Keeping you all in my thoughts.

Hugs and love,
T

Maggie May said...

I'm praying for your boy. You are such a good momma and keep 'blubbin' to him, keep touching him and holding him and loving him.

Stinkypaw said...

Sending you and yours lots of love and good thoughts - stable is good.

pita-woman said...

Geez what an emotional rollercoaster. I went from smiling at the bluhbabluhba noise to tearing up at the other mother in the waiting room to reaching for the Kleenex when the doctor talked to you, then back to smiling when you asked your husband to kick the doctor's ass.
I'm glad that Big Kid is at least aware that you're there with him.

Mrs4444 said...

This is my first time here (came via Joanna's blog). My heart goes out to all of you, and you will definitely be in my prayers tonight.

atiredwife said...

Saying prayers ...