Angie & Jim

Catching Upby Jim

I’m sorry I haven’t posted anything new today.  There has been a little back-and-forth between the doctors involved, so I wasn’t sure what to say yet.  Now that the day is nearly over, I think things are at least set for tomorrow.  So, here is the latest:

Dr. Dubin (a pediatric electrocardiologist, and one of the first heart doctors we met here at Stanford/Lucile Packard) came by and told us that she’s will helping with Angie’s arrhythmia.  She remembered us, even though we hadn’t seen her for about 6 years.  She told us that she wants Angie to start on an anticoagulant (blood thinner) because of the atrial flutter she’s experiencing and also because of the clot that they saw during her CT scan.  We hadn’t heard much about that clot, so that was a surprise to us.  It isn’t related to the flutter she’s having since that was before she got into tachycardia, and we don’t know how long it has been there, but they are concerned nonetheless.  Dr. Dubin also wants to get Angie on some medication that treats tachycardia called Sotalol.  While it is unlikely that the drug will get her out of the flutter, it is a possibility.  Regardless, they didn’t want to start that until she was on the anticoagulant, which she now gets via IV.  Last week, they had given her Heparin in shot form every 8 hours.  If you hate getting shots in the arm, try getting them 3 times a day in the stomach.  Yuck.  Now that it is delivered in her IV as a drip, it means she has to get another IV for other medicine — so she still has to be stuck again.  Not fun.

Dr. Dubin also wants to do a transesophageal echocardiogram (or TEE) to have a better look at the clot in her ventricle.  TEEs are basically an ultrasound from inside your throat.  It involves being put to sleep and having a breathing tube down your throat.  Usually, they also take it out while you’re asleep.  Angie has woken up with them still in and it is about the most unpleasant experience you can imagine coming out of a procedure.  Dr. Dubin’s plan is to deal with the fluid problem first and then get her on anticoagulation for a month and then bring her back in for another TEE and a cardioversion (a shock to stop the arrhythmia).  We’re not thrilled with the idea of atrial flutter for a month, but with the current state of things (fluid, clot, etc.) that is probably the best option.

Dr. Lui came in later and said he didn’t want the TEE (which made Angie pleased) since it wouldn’t change what they end up doing and it means another procedure for Angie.  We trust them both and know they are both experts, but it is hard for a patient when the doctors disagree.  If Angie has the TEE, she’s supposed to be off of food and water for a few hours beforehand, but we’re already worried about her losing her strength and when you can’t eat, it doesn’t help.

So things went back and forth and the latest from the nurse is that she can eat after midnight, which means that she will not be doing the TEE tomorrow.  Of course, that may change tomorrow, but it won’t be until after breakfast (probably).

Today has been a bit emotional and difficult as we see the doctors struggle to figure out what to do next.  Angie had an x-ray this afternoon that didn’t look markedly better than yesterday, which means the fluid isn’t draining very fast.  We hope that that changes because we would prefer not having another chest tube.  I’m hoping that they will give her another day tomorrow to shed as much as she can before they decide what to do next.

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Thank you all for your love and concern.

Long Hard Road Aheadby Jim

Dr. Lui and Tara Drake (Dr. Lui’s assistant) came in after we got into our room here at Stanford to give us some information.  Right now Angie’s heart is in fibrillation, which they can’t fix yet because of the fluid in her lung.  Angie has taken a couple doses of diuretic today and has another tomorrow morning before her chest x-ray.  If Dr. Lui feels it is helping enough, then that means Angie won’t need another chest tube.  It would be great if they don’t have to drain her like they did last time.  It is very important that they get this fluid off, but it is much better to get it out naturally (or at least medicinally).  We’ll know mid-day tomorrow.

As far as the arrhythmia, this is where things get complicated.  Because it has been going on for so long (over 48 hours now), she’s at risk for a blood clot.  That means they don’t want to get her out of arrhythmia until she’s been on a blood thinner and something to suppress the arrhythmias themselves.  The drug they want to put her on is a drug that is very effective, but it also tends to have negative side-effects that they are concerned about.  Dr. Lui said that these side effects generally are only problems when the drug is taken for a long time, as in years.  He wants to only have her take it for a few months while they sort out her rhythm problems.

It sounded like Dr. Lui wants to get the fluid problem fixed this week, send her home for a few weeks on the new medication and then have her back in 3 or 4 weeks to cardiovert her (shock her to stop the arrhythmia).  Angie has had a cardioversion before, and they aren’t fun.  I’m pretty sure they need her to have a functioning respiratory system before they want to do that.

So, that is the current state of affairs.  It looks like we’ve got a few weeks of challenges ahead of us.  Please keep praying for us.

Thanks.

It’s Not Over Yetby Jim

I was nearly done composing a post when things changed and I had to start over.  Over the weekend she had some tachycardia and when we called the doctor he wanted to see her today.  When we arrived, they did an X-ray and did some blood work.  The chest X-ray showed fluid building up in her lungs again.  It wasn’t as bad as in the ER two weeks ago, but it is definitely worse than when she was discharged last week.

Dr. Lui had a hard time deciding whether to let her go home or to admit her to the hospital.  In the end, he decided to let her go and try to drain the fluid medicinally.  If anything worsened, we were to come in immediately.

Since she had some arrhythmias over the weekend, we asked if we could have her pacemaker interrogated and found out that she’s been in atrial fibrillation since Saturday night.  They called her cardiologist and he changed his mind and wants her admitted tonight.  So, it looks like another week in the hospital for us.

Many Thanksby Jim

I just wanted to say, “thank you!” to everyone who has been following along and showing such love and support over the past (rather difficult) two weeks.  I am really grateful for each of you and all you’ve done for us.  The thoughts, prayers, phone calls, instant messages, flowers, treats, smiles, etc. have all been so much appreciated.  Despite the grim outlook from last week, Angie’s prognosis looks good and I think she should be back to “normal” within a week or two.  I’ve been overwhelmed by the generosity of those at work that have offered to donate vacation time so I can take care of Angie.  I can’t tell you how much that means to me.  I will forever be grateful to all of you for your kindness in every shape and form.  It has given me strength over the last two weeks when I needed it most.  Thank you all.

We’re Coming Home!by Jim

The doctors have just give us the final approval for going home!  Hurrah!  After the paperwork & discharge orders, we should be on our way.

Favorite quote from this hospital visit?  Angie saying that having her chest tube on suction made her feel like a Capri Sun drink when someone is trying to get the last drop out of it.  She told one of the staff here at the hospital and she really got a kick out of that analogy.

Our Halloween Scare/Laughby Jim

Angie had a little scare this morning just before breakfast.  Because it is Halloween, some of the employees here are in costume, and the kind woman who brought Angie her breakfast was dressed as a police officer.  Angie hadn’t put on her glasses yet, so she didn’t notice anything strange at first.  The people who bring the food usually wear black, so she couldn’t tell there was anything different, except for the hat this woman was wearing.  Angie thought, “That’s funny, it kind of looks like a police officer’s cap.”  When the woman leaned over to put the food on the tray and Angie could see more clearly, she realized it was a police officer’s cap.  This startled her and she looked alarmed.  The poor woman saw Angie’s distress and after everything was explained, she kept apologizing for scaring her.  Our nurse was in at the time and he, too, was a bit confused.  He got a good laugh at it.  He said his first thought was, “Wait, is this patient a criminal?”  He said they get people here in the hospital sometimes that have to have a security detail stationed outside the room.

It made us all smile.

Going Home (Maybe)by Jim

Dr. Lui, Angie’s primary cardiologist, just stopped by to see Angie and make sure she’s ready to go home.  Dr. Rogers gets to make the final call, but having Dr. Lui saying she’s ready is a good sign.  We think that we’ll probably get discharged this afternoon or evening.  Angie is thrilled.

Dr. Rogers et al. came by about an hour after Dr. Lui and checked in.  He said that they would come back in a couple of hours and go on a walk with her while monitoring her O2 levels.  If they like what they see, they’ll let her go home today.  That is very encouraging.  Already, I’ve been on two practice walks with Angie 🙂

Once we get home, we’ll still have lots of work to do.  Angie will need supervision for at least a week or two.  Thanks to the very generous people who have offered to donate some vacation time to me to help take care of Angie, I should be able to stay with her.  I should be able to work from home and get in half days so I don’t burn through other people’s vacation any more than I have to.  Occasionally, I may need to go in for a few hours, so if anyone would like to come play nurse and visit Angie for a bit, that would be very helpful.

We’ve both been overwhelmed by the love and support from everyone during this whole ordeal.  Thank you so very much!  I wanted to especially thank Brandon and Mary, who opened their home for me (less than 2 miles from the hospital).  I can’t imagine having to have had to commute on top of spending very long (and worrisome) days here at the hospital.  I will be forever grateful for your incredible kindness.

Hopefully my next post will be the news that we’re packing up to go.