Thursday, May 16 2013

One week from surgery.  Unfortunately, we have hit a bump in the road.  At the last echo before boarding the plane home on Monday, Erin's tests showed a buildup of fluid around her heart and lungs.  It is not unusual after surgery, but something that needs watching.  Over the two days, we noted that her stomach was distended, and she was having some slight difficulty in breathing laying down.  I ended up sleeping with her on Tuesday night, and she was tossing and turning (and wacking me in the face every 15 minutes) the entire night.

On Wednesday, we had a follow up appointment at Lurie Children's with Jeff Gossett.  I told Sheila as we walked into the hospital that this was the first visit in Erin's entire life where we weren't walking in worried about what we would hear.  Wrong again.

After having an echo and chest x-ray, Jeff stunned us by telling us that her fluid buildup was reaching dangerous proportions, and that she needed to be admitted to the ICU immediately.  He wanted to start here on an aggressive treatment of Lasix to see if that would reduce the fluid buildup.  If not, the next and likely step would be a chest tube.  Erin had a complete and total meltdown when she realized that she was going to be staying at the hospital.  She was inconsolable for a period of time.  Who can blame her?  She is so over this entire process.

I quizzed Jeff about how long we were looking at, as he initially hedged on "a couple of nights."  This time, he told me that we should plan on a week, and hope for less.  I was stunned that it could go on that long.  The hope is that she simply was dismissed too soon from the hospital in Rochester, and that we can treat things with Lasix.  Jeff told me that one consideration, still too early to think about seriously, is that her heart is not responding to just the ASD closure, and that she needs the balance of the surgical intervention that was originally planned.  We can't even think about putting Erin through this.

She was terrified when they came to do the IV, having experienced enough pain over the last week that her tolerance at this point is zero.  The staff did a great job numbing the area and doing a relative painless job.  She is in a large room, with a pull out couch, nice recliner, and generally very comfortable surroundings.  She even has a large HD flat screen that seems to get a nice array of channels with the exception of last night's Bulls playoff game.  Go figure.  Food is ordered from a room service menu that provides a wide choice of options.  The downside is that it takes forever.  Dinner last night took an hour from ordering.  Breakfast took two hours, due to the order allowing her food not being properly entered into the system.  Really frustrating.

An hour after checking in, Erin was bouncing right back and having a ball playing.  She told me she liked the hospital because they bring her food and there are nice people here.  She knows her job is to go to the bathroom as often as possible, and she did a great job last night.  I finally left for home at 9, as Sheila was taking the first night.

Apparently she had an awful night with Erin.  Every two hours when they came in to take vitals Erin would have a complete meltdown coupled with screaming and kicking, wanting to go home.  I feel so bad for both of them.  When I arrived, Erin was over it and was laughing out loud at Sheila's antics.  You would have thought that she loved it here.

The good news is that Erin got rid of almost 2 liters of fluid over night.  The Lasix seems to be working and for now, the chest tube is off the table.  Having been through this, we know how quickly things can turn, so we are not getting overly excited.

I will post more when we have more news.  For today, Erin will enjoy a number of visitors, and try to stay upbeat.