Friday, April 22, 2005

Day 12 - Easy Day, Hard Night

Today we had our education class. It was us and another mother whose baby also got a colostomy. As the ostomy nurse was teaching I started to get panicked. It was similar to when I was trying to learn how to scuba and first went underwater with the respirator. My brain said, "No. I can't do this. My baby doesn't need this. I can't do this. I can't." I tried to give the outward expression of someone who is listening, but inside I wanted to run away, far away, where babies are born healthy and I never have to see another picture of a prolapsed stoma. When it came our time to practice on the doll, I had Matt go first. Seeing him do it made it easier for me to do it. And I could. Of course doing it on a baby who is moving around with real skin and real stoma will be something else. We'll see.

The ostomy nurse also gave me a doll that has a stoma. The dolls are made to give to kids who have stomas so that they can have a doll like themselves and play at putting on the "appliance". (I hate the term appliance when used in this context. Sounds like I'm putting a toaster on my child.) Anyway, I'm going to be giving this doll to Janie when I try to explain about her brother Jack. I have no idea yet how I'm going to do it, and there certainly aren't any books specific to this situation, but it's going to have to happen at some point.

We tried to give Jack 10cc's of breast milk today (like a thimble full) but it wasn't received as I had hoped. Once again I had imagined that he would love it and melt into my arms as I fed him. Instead he cried and fussed as I tried to feed him. He finally took about 5 cc's then threw up green all over me. It was then decided that maybe it was still too early for breast milk, so back to Pedialyte.

At about 2pm I suddenly remembered that I had a paper due today for one of my classes. I quickly pumped then drove to school and wrote possibly the worst paper in my college career. I had attempted to explain how the experience of being a patient's parent had given me new insight into healthcare which will make me a better hospital financial analyst. My recommendation was for every non-clinical leader such as in Administration or hospital Finance to each year shadow a clinical person to keep a perspective of a patient and/or caregiver. Unfortunately, because I wrote it in such a short time it came out all over the place.

When I got back to the hospital, I knew something was wrong when I saw all the nurses and doctors crowded around Jack. His heart was too rapid and too irregular. Instead of the usual 170 bpm, it was ranging from 210-300 but was all over the place. They said it's some sort of irregular electrical impulse. They don't know the cause. First they tried pulling back on his deep line to fix it. (The deep line goes into a vein on his wrist and threads its way into his heart.) If the deep line caused it, then this would have fixed it, but it didn't. Then they tried giving him one and then two doses of some medicine that also generally has immediate effects, but that didn't work. Then they had to draw lots of blood to check his blood counts, electrolytes (normal) and blood culture for infection (takes 3 days to get back). They couldn't get enough blood to do the blood count because he was screaming and making his heart go too fast, so they will try again in the morning. Finally they gave him another heart drug called dig-something which he will be getting every 6 hours. This drug is supposed to have a slower effect, so we may not see anything immediately.

He was moved out of his little private room, back to front and center where he could be monitored better. When I held him again he had all the EKG wires on him, an IV in his scalp, plus many new purple bruises on his scalp, hands and feet from where they tried to get blood. I hate that. I really do.

Tomorrow he will have an echo (I think echocardiogram) which is best desribed as an ultrasound for the heart. The cardiologists conferred tonight and will meet with us tomorrow morning. Usual suspects for this type of sudden heart problem are things such as the deep line tickling the heart, infection, something they're born with, or unknown. They don't think its infection because he shows no other signs. They don't think its the deep line because they pulled that back. They doubt it could be something he was born with because it didn't show up until now. That leaves us with unknown. Unknown. He has a problem with his heart of which they don't know what caused it or how to fix it. &*$$@#&*%

So my heart is having a hard time beating tonight. I had the worst time leaving him, but I needed to get home because I have to get up with Janie tomorrow and I want to get to the hospital as early as possible. Luckily Matt will be there first thing. He's convinced its infection. At rounds in the morning the neonatologist had discussed how well Jack was doing but had also said that there was always a possibility of an infection from his deep line. I took it as another one of those cya (cover your @ss) sort of warnings. All day long Matt had been saying that he felt something bad was going to happen because things were going too well. When it all went to hell this evening, Matt kept telling me that he knew it. He knew it was going too well. He knew something bad would happen. Like the end of every horror movie when the monster who was supposed to be dead comes back. I just kept telling him to stop it. I don't want to hear about it. I know, but please stop. All day I had begged him to let it go, and then he was right. And I'm back in hell again.

Do you ever feel like just looking at the sky and yelling, "What? What?" I'm not religious, so it's not anger at God, just a question I'd like an answer to by whatever or whomever. What do you want me to do? What do you want from me? What more? What?

Driving home tonight I passed a dead deer laying on the side of the road. I almost lost it altogether. You know, final straw time. She looked like a beautiful deer, probably the same one I saw grazing at the park near my house just a few nights ago. I just don't fu-king get it and thinking about my son with his heart working too hard or the deer just laying there I just don't get it.

I'm sorry this ended so badly. It's been another difficult night.


Blogger The Lioness said...

Oh Pazel, I am so so sorry! I wish I could be of help somehow, I cannot imagine what you must be feeling. I hoope they find a cause soon, I hope Jack gets better soon, I hope you get your much deserved break finally.

1:55 AM  
Blogger Jen P said...

Oh Pazel. Oh Jack. I wish there were more words Pazel. I really do. I wish Jack was better. I wish the deer weren't dead. I wish the doctors weren't assholes. I wish this never happened and your boy was home.

Pazel, I will be thinking of you and Jack all day tomorrow hoping the tests come back clean and that it was a fluke. A nothing. And that Jack is doing really, really well again.

Best wishes.

2:03 AM  
Anonymous Anna V said...

Oh man! I am so sorry this is happening. I was so hoping it was going to be as easy as it could be from here onwards.

K's got a MACE and it needs a catheter threaded through it to do his flushes. I totally chickened out when the stoma nurse taught us to thread it and 5 weeks later I still don't do it. You're not alone in having issues with stomas. Sooner or later I have to learn but at present it was just too much for me.

I hope you get good news and clarity tomorrow.

2:23 AM  
Anonymous Menita said...

Oh, no, no, no, no, no.
I can't believe this is happening, I wish so much you and your family would get a break already. I am so sorry - I hope the tests show everything is all right.
And I can't believe you're still writing
I will keep thinking of you and checking back.
Big hug.

5:42 AM  
Blogger Jody said...

I'm so sorry. Bad days in the NICU are the worst of the worst bad days. I hope the doctors get to the root of this heart thing right away, and the digitalis takes care of the symptoms in the meantime.

You and Jack are in my prayers.

6:29 AM  
Anonymous deborah said...

I'm so sorry, Pazel. And mad. At the Universe, at the doctors, at the general unfairness of life.

But I'm putting my anger on the back burner so I can concentrate on sending happy, healing thoughts to Jack.

6:48 AM  
Blogger getupgrrl said...

You are all in my heart.

6:57 AM  
Anonymous Wrin said...

Not that this is welcome right now, but maybe it'll be nice to refer to back later.

I live in a reasonably small metropolitan area in Canada, the province with the capital that's the furthest north, and the coldest. Anything further is 'territories' which we kind of write off as the arctic.

I also live and have had the chance to work in one of the premier pediatric cardiac centers in the world.

What happened to your baby is something called SVT or supra-ventricular-tachycardia. It's when the pacemaker of the heart for one reason or another gets a stimulus to go stupid-stupid fast, from, like they said, being tickled by a catheter, from an infection, or from something that they're not sure about (which could be a bad wiring job in the heart, basically, or something else.)

Part of the reason they took a bunch of blood is because part of that vague 'something else' category includes an imbalance of salts in his blood.

The drug that they gave that is supposed to usually work is called Adenosine, and it works very quickly, to the point where they say it has to be pushed in through a deep line (what you call his PICC line,) or else it will be metabolized by the blood in roundabouts fifteen seconds. What it does is set up a very short, very temporary roadblock in between the crossroads between the heart's pacemaker and the heart's biggest chambers, saying WHOA NELLY! This means that if the SVT is due to a wrong electrical communication (which can happen even when it's caused by something else,) it will immediately convert his heart back to a normal rhythm.

The other thing that they've given him is Digoxin, which is kind of colloquially referred to as just 'dig' as in the beginning of 'didja'. It's actually derived from the foxglove plant, and what it does is it's sort of like setting up a more long-term roadblock in the same place as the adenosine, sort of like cardiac photo radar speeding tickets. It forces the heart's conduction to slow down.

This means that kids who are on it have to be monitored closely, since sometimes the conduction then decides it's a good idea to drive like an old lady, and they have to let up a bit on the dosage.

An echocardiogram, as you've heard referred to as an 'echo', is an ultrasound of the heart. It lets them see the pumping action of the heart, whether it's good or not, the relative size of the heart, whether or not the valves are working well, and allows them, using the magic of doppler, to map flows through the heart. The reason for this is that very young babies haven't had a chance to screw their hearts up with McDonald's and lots of cigarettes, and so when they start having big-people heart problems like SVT, they tend to start worrying about structural abnormalities in the heart.

An echo is a non-invasive, painless way for them to tell if there's something structurally abnormal. Ultrasound machines are getting so good, and so high-tech, that a lot of these structural abnormalities are diagnosed before the baby is even born.

I just want you to know that there's light at the end of the tunnel, scary things do happen, but at the end of it, your baby is in the hands of people who see this stuff relatively frequently, and know very well how to handle it.

Much love,

6:59 AM  
Blogger Floyd said...

This is all so horribly unfair. I'm so so sorry for poor little Jack. I wish there was something I could do to help you out. I can't imagine how you are holding up as well as you are.

You are all in my prayers.

7:00 AM  
Blogger Lala said...

I'm singing Bill Withers for you. "Lean on me, when you're not strong, I'll be your friend, I'll help you carry on".
I wish we could do more......

7:11 AM  
Anonymous terri c said...

Storming heavens with prayers. It can't hurt. Can you take incompletes? I can't imagine even thinking about writing a paper with everything you are going through. Hoping the echo brings useful info. Hoping something, anything, brings some comfort. YOUR heart must be raw.

7:42 AM  
Blogger KelliAmanda said...

Delurking to say that I hope to see good news on here again soon. I'm not religious either, but am keeping your family in my thoughts and sending good vibes your way for a positive outcome for little Jack.

8:30 AM  
Anonymous Amy said...

Ok, first...the fact that you even attempted to write a paper in the middle of all this makes you superwoman in my book. I'm sure your teacher will agree.I'm so sorry you and Jack had such a rough night. Even knowing he is in such good hands it must be so hard to leave him.

Just a little piece of assvice...I know this is probably at the bottom of your list right now but ask one of the nurses if someone from the Child Life department could either help you with ideas about talking to Janie or maybe even meet with you and her together to help you explain the stoma and the special care Jack will need. They most likely do have some sort of book or video (or if they don't have it they could order one) that would normally be for kids who are getting a stoma themselves but could really help her understand and make it all less intimidating and scary. I work with kids with HIV and have found the that most Child Life specialists are really, really wonderful. ok, end of assvice.

Wishing your family and especially little Jack all the best.

10:28 AM  
Anonymous Amy said...

sorry, forgot to add this to my comment. Here is a link to order a coloring book about ostomy surgery. It doesn't say what ages it is appropriate for but if the Child Life Specialist doesn't have anything maybe it will help explaining things to Janie.

Good luck. Hopefully today will be a better day.

10:39 AM  
Anonymous Soper said...

Oh, Pazel. Shit shit fuck fuck shit.

11:48 AM  
Anonymous Anonymous said...

Please don't apologize for anything you write. We are just so glad you are updating us. My heart hurts for all of you.

What a blessing to have Wrin interpret everything.

Keeping you all again in our prayers. Jill

12:34 PM  
Blogger Jody said...

I am so sorry for your worry and pain.

As Grrl said, you are in my heart.

7:47 PM  
Anonymous Kim said...

I am so sorry for you and your family. I keep your precious son in my prayers. I hate that you have to go through this terrible period.

8:10 PM  
Anonymous rebecca said...

yr sweet baby has all my thoughts and prayers tonight.
he will one day be a strong man...

9:03 PM  
Anonymous Anonymous said...

Oh crap Pazel, I'm sooo sorry. So sorry you're dealing with more.

I'm thinking of you.


9:14 AM  
Anonymous Anonymous said...

Pazel--Just wanted to let you know I've been thinking about you and your family.

I can't believe you wrote a paper in the midst of all this....

Lisa | Brooklyn Girl

10:41 AM  
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