Angie & Jim

Roller Coasterby Jim

The rest of today was kind of a roller coaster.  Angie would be doing great, but then after getting up she would start experiencing terrible pain and have difficulty breathing.  We went back and forth with the chest tube in suction, then off, then on, etc.  They want her to drain, but I think it drained too much too quickly.  After the second episode, they called in the doctor and got some morphine ordered (she was at 8 — yes, we cracked Brian Regan jokes later) and did a chest x-ray.  A couple hours later, after the pain was more under control, the doctor returned to tell us that the fluid was almost entirely gone from the lung (for now), but that the lung has collapsed a little bit on the right side.  This is probably due to the amount of fluid she’s lost.  Her drainage tube is currently clamped, so she should be good until tomorrow.  She was able to get up and walk a bit with it clamped and she didn’t have as much pain as before, so we’re hoping that was the cause and now it is under control.
Now that she is comfortable, I finally feel like I can go get some sleep.  The very kind nurses have let me stay WAY past visiting hours without saying a word.  They have been very good to us.
Tomorrow the plan is for a liver CT scan, though I’m not sure when.

Catheterization Finishedby Jim

They just brought Angie back to our room.  I thought I’d have to go wait outside the recovery area, but they brought her right back to her bed.  She’s trying to sleep now since she isn’t supposed to get up for 4 hours after the procedure.

The cath went reasonably well.  Her pressures were really high, but they found lots of fluid around her right lung, and after draining it, the pressures improved.  Not yet to normal, but improved. They took out an additional 1.5 L of fluid during the procedure.  The catheterization revealed that her heart circuit is working properly.  The heart function is below normal, but isn’t “bad” (according to Dr. Lui).  They didn’t do any sort of repair while they were in there, because everything looked fine.  However, they still haven’t identified why the fluid is accumulating, but they have a few more things to check into.

During the ultrasound this morning, they saw some abnormalities in her liver.  They want to do a CT scan to investigate further, but not today.  It isn’t scheduled yet, but I presume we’ll be tackling that tomorrow sometime.  The rest of today is devoted to resting and recovering from the day’s events.

Thanks for your prayers and concern.

Cardiovascular Catheterizationby Jim

They just took Angie back to the cath lab to get started.  They have about an hour of prep (from what we were told last night) before they actually begin the procedure.  If everything looks normal, it should only be about two hours in the lab.  They are able to do some minor repairs while they’ve got the catheter in her heart, which could add an additional 2 hours.  They are able to install a stint and do a fenestration while they’re in there, but we’re hoping it won’t come to that.  I have to admit, I’m a little anxious about the procedure.  If they find something wrong with her heart, that could explain the problem with the fluid, but then there’s something wrong with her heart that they have to fix.  If they don’t find anything wrong, then we’re back to the guessing game to try and figure out what is happening.  I’m not sure which would be better.  I guess the best case would be that they find something wrong that they can fix while they are in the cath lab and that after she gets out, things start to improve.

Thank you all for your love and support at this difficult time.

Keep the prayers coming.

The Start of a Long Dayby Jim

Angie is having an ultrasound right now to check her internal organs.  She’s been down there for about 45 minutes.  At yesterday’s ultrasound they checked the fluid in her abdomen, but I guess they didn’t get instructions to look at anything else.  Oh, well.

Immediately after the ultrasound Angie will be going in for her cardiac catheterization.  I will keep the blog up-to-date with the news as it unfolds throughout the day.  They were also talking about doing a paracentesis today, but we’ll see how everything else progresses.

Catheterization Scheduledby Jim

Just a quick update:

The doctor came by a few minutes ago to tell us that the catheterization is scheduled for tomorrow morning.  Now that Angie can lie flat, they can do the procedure.  Hopefully it will tell us what is causing the build-up of fluid.  They have some ability to fix things while doing the procedure (e.g. putting in a stint), but if the heart function looks good, we’ll be back to the drawing board with trying to figure out what’s wrong.

Unexpected Hospital Visitby Jim

I know there are a lot of people who would like to know details as they happen, and instead of repeating myself to everyone over the phone or texts, I’ll try to put down as many details here on our blog.  I’ve got a few plugins installed so that you can sign up for notifications for new blog posts.  If you have questions, let me know and I can guide you through the process.

Last week on Saturday, Angie started feeling short of breath and had difficulty breathing.  She had just started a new medication, and so at first, we thought it was that.  She didn’t sleep well Saturday or Sunday, and tried to take it easy on Monday.  I came home from work early because she said she still wasn’t feeling well and by about 5:30, just standing up and walking around a little was really exhausting.  Her breathing had become labored and we decided to come to the hospital.  Instead of going to the nearest ER, we decided to drive down to Stanford (her regular hospital).  We’ve played that game before and we usually just end up here anyway, so we figured it was best to just come straight.

The ER here at Stanford was a little different than the ERs I’ve been to before.  First of all, we had to pass through security like at an airport.  We walked through a metal detector and had our bags searched.  We were then given a face mask and asked to put it on while in the ER waiting area.  It was a little strange.  Fortunately for us, Angie’s symptoms (difficulty breathing, shortness of breath) put us in the express lane and we were seen by a doctor within just a few minutes.  They got us to a bed in the ER and some very nice doctors and nurses came and listened to her breathe, gave her an EKG, checked her meds, asked a bunch of questions, took a chest x-ray, etc.  Before 2 hours were elapsed, we were told she was going to be admitted and before we’d been here 3 hours, she was on the floor.  That was the fastest ER visit we’ve had to date!

That first x-ray showed some fluid build-up in her lung cavity — not in the lung itself, but in the area around it.  This is the reason for the difficulty breathing.  Her oxygen levels were pretty low (the doctor in the ER asked if her “toenails are always this blue?”), so they gave her some oxygen.  They decided that they wanted to try and increase her medicine that removes fluid from her system before they actually go in and remove the fluid surgically.

That was last night.  This morning, things weren’t too much better, so they decided to do a procedure to put in a catheter to drain the fluid.  They also considered a thoracentisis, which is basically sticking a needle in your side and sucking the fluid out.  They didn’t want to have to do it multiple times, so they put in what is called a pigtail catheter so that they can drain it over the next day or two.  I think this is partly because they don’t yet know why the fluid is building up and how quickly it is.  Angie’s cardiologist, Dr. Lui, wants to do a catheterization, but that requires her to lay down flat for a period of time, which is hard to do when you’ve got fluid in your lung.  Before we can do the catheterization, we need to fix the fluid-in-the-lungs problem.  Catheterizations are a procedure that will allow them to see her heart function in a lot of detail.  Dr. Lui wants to make sure that the Fontan conversion she had back in 2007 is working properly (and if it isn’t, could be the cause of the fluid).

The surgeon came and did the pigtail catheter right here in our room.  It was about noon when he first came to set up.  They got all the sterile pads and equipment and prepped for about 30 minutes before they went in.  It is done with local anesthesia, but it was still really uncomfortable for Angie.  She said it was mostly a really strange (and startling) sensation to have something being threaded into her lung cavity.  The doctor also drew out about 600 ccs of fluid right away and sent some off for analysis.  Almost immediately, Angie could breathe more easily.  She’s got a chest tube and drainage box sitting by her bed now to collect the rest of the fluid over the next couple days.

Since then, Angie has had another chest x-ray, an ultrasound, and a late lunch.  She’s in good spirits and breathing better than she has in days.  She’s watching The Hobbit right now from the on-demand movies here at the hospital.  We will probably be here for a few days; tomorrow they’ll probably do the catheterization and possibly a paracentesis.

I will keep the blog up-to-date with the latest news as it comes.  If you sign up for notifications, use the Hospital Updates category.  I’ve also added a means to log in with your Google, Facebook, or Twitter accounts instead of having to create a new one just for our blog.

Thanks for your love & prayers.