Monday, May 02, 2005

More Guilt

My best friend, her husband and two kids visited this weekend. It was a trip her and I planned months ago figuring that by a month out most of the family will have already visited and I will be feeling well enough for visitors. As all of this unfolded, we reconsidered, but since Jack was to be coming home on Tuesday then it seemed to be okay.

Yesterday we went into the city (San Francisco). We took the BART (light rail) in, took the cable car, ate seafood, rode the carousel on Pier 39, saw sea lions, visited the aquarium, ate ice creams, etc. While we were waiting for our cable car back to the BART station, Matt checked his voice mails and there was the hospital. Jack was having SVTs again (heart going super fast and very irregular). They had tried to call me but had the wrong number. So I grabbed a taxi and flew to the hospital.

Jack's heart was at it again and it continued for 12 hours. I was rocking Jack, crying, beating myself up for being away but at the same time knowing that it was good for Jamie. And the nurse says, "Did you have fun?" Yes. But I hated her for making me say so.

Jack is not going home tomorrow like we thought. We found out this morning that they knew on Friday that he'd be there another 10 days because his infection continues, but they forgot to tell us. With the heart problem, the wait continues.

Tomorrow he'll be on the halter monitor again. They increased his digoxin and added another drug (enterol?). If he stays problem free, cardiology will release him in a few days as long as we've finished our CPR training and are proficient with the stethescope. We may also end up with a take-home heart monitor.

He'll be on the antibiotics for his infection until next Tuesday. They don't want to release him until he's done, but we're trying to work out a home health deal to keep his iv at home but have a nurse visit. I'd like to be hopeful but I'm not.

Meanwhile the colostomy seems to be the least of our worries. Changing the bag is still hard and slow, but we're getting better.

I know that I can't be there every minute, but he only starts these heart issues when I'm not there, and they're started by a vigorous crying jag. When I'm there, I hold him and take care of him and he doesn't have such vigorous cries. It only makes leaving him harder.

16 Comments:

Blogger Melissa said...

I'm so sorry mama. Hugs :(

3:45 AM  
Blogger The Lioness said...

Oh Pazel, such sorrow... I am so sorry and so very inneffective w words. Know that I am thinking abt you, know that i am praying it will all be over soon and you may take him home, healthy and happy.

4:16 AM  
Anonymous j said...

I'm so sorry you had to go through that again. Don't beat yourself up. You couldn't have known it would happen, and Janie does need you, too. And don't try and convince yourself that it wouldn't have happened if you were there. You have no way of knowing that. You can't be there 24 hours a day. I hope he continues to do well, and is home soon. You've had such a rough ride.

4:24 AM  
Anonymous deborah said...

Oh sweetie, I'm so sorry for the setback. But your strength continues to inspire me.

5:35 AM  
Blogger Debbie1788 said...

(((((Huggs)))))

Just continue to look at this like a setback, you will be home and healthy, and happy again...soon!

6:19 AM  
Anonymous Anonymous said...

I think about you and your family every day - worry what the next thing will be. I am waiting and hoping for that trip home too. Remember when you are feeling guilty for being away from him, that Janie and Matt need you too, so you are not being selfish to be away from him. (((((((Hugs)))))))
Heather Ann

6:23 AM  
Anonymous Wrin said...

The drug you describe is a name not immediately familiar to me, which is not surprising, since there are many calcium-channel blockers or beta-blockers on the market with many different brand names, which may be named something yet again different in the United States as opposed to Canada. They're all different, and yet, kind of the same.

The Holter monitor will be there hopefully to capture more than one lead -- the ECG monitor they have him on right now only captures three leads, whereas the holter captures, if memory serves, either twelve or fifteen, representing different axes of the heart, different pathways the electricity can take. This way they can kind of isolate which pathway the SVT is taking if it happens again, or, in the even it's taking more than one pathway, see which ones. It helps them develop a plan of attack, like mapping out your enemies' hideouts before planting an ambush.

The infection itself might be the thing causing him to go into SVT, and when the infection's gone, it's entirely possible that he won't keep going into SVT anymore.

As far as the crying-jags-and-it-being-that-you're-not-there, babies cry, and he will cry with you there and he will cry with you not there. It's upsetting, I'm sure, and to what extent I will admit I cannot even imagine, but the important thing is that you are able to be there, that you can rescue him afterwards.

On the topic of what happens if the SVT doesn't resolve, has cardiology talked to you about it? I think it's worth it for you to get as much information as you can from his particular doctor who knows this baby's particulars and this baby's test results; the internet tends to be too vague in these instances, I find. Also, questions about what are the chances of having this recur when he is older, what are some signs it's occurring other than simply being able to find a brachial pulse (which can be kind of hard in chubby bebbes,) and your options as far as things like a permanent drugless fix go.

I am not sure if they've identified why he has SVT, what kind of rhythm it is, or if they think that he has a re-entry pathway or something. Sometimes these things need to be fixed mechanically, using things like radiofrequencly ablation, which is where they thread a deep line into his heart with a little laser on the end, poke around until they find the extra pathway that's making his heart go supar fast, and then use the laser to put a tiny piece of scar tissue in the way, effectively acting as a roadblock.

As much as it's very distressing to hear that your baby's been having a dysrhythmia for 12 hours straight, it's kind of a happy sign for me, anyway, because if he was able to continue a heart rate that high for that long without any detrimental effects with the way of his blood pressure, it means his heart is strong and can handle it. Sometimes what happens with SVT is the baby will go into SVT and their hearts are sick, and their hearts may convert into something more dangerous, or even something fatal. The fact that he had SVT that long and was stable means (to me, anyway,) that his heart is strong and healthy, other than this being-over-sensitive business.

I am glad for your little girl that you have the presence of mind to be here for her, since she's having, I bet, a confusing time of it. I'm very glad that you're able to stick around enough that you can make it back to the hospital, that you're not several states away, that you can be there. It's something that happens fairly often where I work. The larger territories to the north, what is known I'm sure to you guys as the arctic, doesn't have large well-equipped centers suitable for complicated cardiac surgery, or well-funded large-scale neonatal programs for prems. They often end up having to have their kids live down here, twelve, fourteen, sixteen hours away, while they stay up north with their other children. It's sad.

Have you been keeping a journal? Ask the RN if she can print you rhythm strips to put in it, as a way to show him -- this is when your heart was normal and slow, and this is when it beat really fast, like a baby bird's.

7:15 AM  
Anonymous Ninotchka said...

I'm so sorry, Pazel. Continued prayers for baby Jack and your entire family.

7:19 AM  
Anonymous Anonymous said...

I'm so sorry about the setback, and the lack of keeping you informed. How unfair you're thinking Tuesday, and they knew days ago it wasn't going to happen. Hopefully the heart stuff clears up along with the infection. I'm keeping you all in my prayers. Jill

8:00 AM  
Anonymous Anonymous said...

What an awful set back for your family.

Wavery

8:01 AM  
Blogger cat said...

You, Jack and family are all in my thoughts. I'm really sorry to hear the day turned out to be so bittersweet. Hoping that Jack is home in your arms soon.

8:12 AM  
Anonymous libby said...

Oh Pazel. So sorry about the infection, the SVT, and a pox on the NICU staff for "forgetting" to tell you Jack wasn't coming home. Good Lord. I'm sure it's hard, but please try not to beat yourself up with guilt, honey. This is NOT your fault. I check in every day and continue to send good thoughts to your family. Hope little Jack is home in your arms v. v. soon.

9:06 AM  
Anonymous Janice said...

Pazel, so sorry for Jack's setback. I hope everything resolves soon and you can all be home together before long.

11:39 AM  
Blogger Jen P said...

Oh Pazel, I'm so sorry. I'm wishing you guys the best and that Jack's heart settles down really, really soon.

3:42 PM  
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