Tuesday, May 14 2013

Today is our 14 year anniversary.  We couldn't have had a better anniversary.  Happy anniversary to the best wife, and more importantly, best Mother ever.  We flew home from Rochester this afternoon,  and Erin is safely ensconced in our Chicago home.

Yesterday, Erin had an appointment back at Saint Mary's to have an echo as a follow up.  As we arrived, there were numerous black SUV's and cars in front, along with Secret Service personnel.  Turns out that it was the Secret Service Diplomatic Protection Unit, waiting for the Dali Lama to leave. By the time we parked underground and came out of the elevator, he was in the car waiting to go.  We literally missed him by seconds as we were leaving the hospital on Sunday, and as we were arriving on Monday.

Erin's echo was brief and slightly mixed.  Importantly, there is no longer any shunting of blood through the ASD hole, now closed.  Having seen numerous echo's in her lifetime, it looked abnormal to me.  The reality was that I had never seen a normal echo, without shunting.  The valve has a modest leak, but within tolerance levels.  The only concern is that she has some fluid buildup around her lungs.  This is somewhat normal for her surgery, and needs to be watched.  Her Lasix prescription was increased in order to rid her body of excess fluid.  It was suggested that we have a chest x-ray at her follow up appointment in Chicago with Dr. Gossett to monitor the situation.  That appointment is tomorrow, Wednesday May 15.

After the appointment, Aunt Mo and cousin Megan left to drive back to Chicago.  They were a huge hit the night before over dinner in the apartment that we had rented.  Erin really came out of the shell she was in, and had a ball with the two of them.  We are so grateful to Aunt Mo and Megan, and Aunt Sara and Uncle Alex for all making the trek to Rochester to give Erin love and support.

We had dinner in the apartment with takeout for the second straight night from Victoria's.  Erin announced that when in Rochester she only eats at Victoria's, which except for her hospital stay is true. It seemed that her goal was to eat half of Rochester.  She ate before dinner, ate a large dinner, and then continued to eat non-stop right up until bedtime.  I have never seen anything like it.  I was full watching her.

I slept in Erin's bedroom and she continues to struggle at night.  She is in pain at night, and has difficulty with breathing due to mucus issues.  I was up most of the night, as was Sheila the night before watching over her.  Yet she seems none the worse for the wear.  She awoke in a great mood, we had breakfast out, and then left for the airport.  The trip home was uneventful, yet remarkable in that she walked the entire way in O'Hare after we landed.  She is a little slow, but determined to do it on her own.  Arriving home, we found a life size Minnie Mouse balloon on our doorstep, courtesy of good friends Tim and Stacey Cavanagh.  Erin loved it, and spent some time "doctoring" Minnie.  I think she wanted to put Minnie through the same punishment she took in Rochester.  Afterwards, she took the neighbor's dog for a walk, and then asked me to take her to our neighborhood park to check things out.

Tonight, Erin's beloved Priscilla (or as Erin has named her, "Passy") came over for dinner, and Erin was in heaven.  I have never seen her more animated or funny.  She was a laugh a minute.  I know that one impact of heart surgery can be depression.  She seems to be undergoing exactly the opposite reaction.  She seems even more outgoing then she already was.  She was dancing, singing, and enjoying life.  All one could ask.

Breakfast out of the hospital!

Pasta lunch before the echo

I am done being Doctored!

Get this echo over with!

Breakfast

Best Mommy ever.

Waiting for Daddy with my ever present iPad

Where's that airplane?

Doctoring Minnie

Sunday, May 12 2013

Erin has been released from the hospital!  Amazingly, three days after having open heart surgery, she was released today and we are back in our hotel.  It's been a long two days since the last update.

Yesterday, she still wasn't eating, and hadn't eaten anything other than a few popsicles since her surgery.  She continued to have nausea from the anesthesia  and was having a hard time even keeping water down.  It was decided to give her anti-nausea medicine which helped greatly.  The really tough part of the day was when the chest tube and catheter was removed.  A friend of mine who is a nurse e-mailed me and strongly suggested that I ask for her to be medicated prior to the procedure.  Erin was given the same oral sedative that she had in the OR waiting room to calm her, and act as an amnesia drug.  The procedure was ugly and very tough to witness, but it was over and she was free of the two lines, with only the line in her jugular vein remaining.

She slept for hours after this, most likely from complete exhaustion and from the sedative.  When she awoke, we took a walk and hit the playroom.  During the entire ordeal, Erin had rarely spoken and at times seemed almost catatonic.  In the playroom, she finally started to come out of it and we saw glimpses of the old Erin.  Aunt Sara and Uncle Alex has flown in on Friday to be with us for the weekend, and we all sat around a table and played games at Erin's direction.  After about an hour, she asked if she could have her dinner, which we brought into the playroom to eat.  She ended up eating quite a bit, which was a complete relief.  She then had a great night of sleep, sleeping the entire night.

Today, the doctors decided that she could go home.  We had to endure the removal of the jugular line, which was the last awful procedure.  Sheila could hear her screaming down the hall.  Not fun at all to have to hold her down through it.  She wasn't given the sedative because it would have required another day in the hospital.  Actually, I could have used it personally.

We had flown her former nanny Priscilla in for the day to surprise Erin, thinking she would need a pick me up.  It was a good call because even after a good night sleep she was in a lousy mood.  She was completely over the entire process, and wanted to go home right now.  After Priscilla got here, her mood brightened significantly and we continued to slowly see glimpses of her old self.  She is eating pretty well, and taking plenty of fluids.

She had an EKG, a chest x-ray, and then we left.  Interestingly, as we were leaving there were hundreds of brightly dressed Asian people lining the entrance as far as you could see.  It turns out that the Dali Lama was arriving just as we were leaving.  We didn't wait to see him, but it was an interesting  thing to behold.

Erin has announced that she wants to go out to dinner tonight, although she is pretty wiped out on the couch.  We shall see how she feels.  Aunt Mo and cousin Megan just got here, driving from Chicago.  I think it will probably be take-out in lieu of going out.  Tomorrow, she has an echo scheduled with the head cardiologist, and then we are dismissed.  She will be on oral lasix for a week, and alternatively tylenol and Advil for pain.  She will also take a baby aspirin every day for an undetermined period.

Erin's step-down care room

Three beauties and Mr Potato Head

First meal in three days

Erin's back!

Erin's beloved Priscilla

May 11, 2013

It's 4 am and since I can't sleep, it seems like a good time to update the blog.  Erin slept quite a bit of yesterday afternoon and evening.  She was up watching the basketball game with me for awhile, and then up again from 2 - 3 am.  She was doing a great job keeping stuff down, but has had a few incidents of getting sick, including one at 2:30 am.  But overall, better.  She is sounding more normal.  She also has her timing down pat.  As soon as I drift off after making sure she really is asleep, she wakes up and calls my name.  It turns out that sleeping in a hospital room in a recliner is a terrific way to solve the problem of too much sleep.

Yesterday, I forgot to mention that her arterial lines in her groin were taken out in the morning while I was back at our hotel showering.  Sheila tells me that it was very unpleasant, as you would expect.  When the nurse went to check the dressing yesterday afternoon, Erin was very concerned and asked if she was going to hurt her again.  Broke my heart.

Today's horror will be the removal of her chest tube.  Having had one, I fully remember the unpleasantness of having it removed.  It has been causing Erin pain, and in the night she touched it twice and caused herself great discomfort.  Having it out will be a blessing, but the process will be hell.

Interestingly, the night nurse Kim told me that she had heart surgery when she was 5.  When I asked her about it, she admitted that she had the same operation (ASD closure) that Erin had.  I think it was beneficial for Erin to see Kim and understand that she had undergone the same procedure so many years ago.  The bad part of the story is that the one memory that stands out for Kim is the removal of the chest tube.

After that, the one remaining line she will have in is the line in her jugular vein.  They have been keeping that one in to give her meds and IV's.  Tonight she is on fluids to offset her inability to take in enough water.  My guess is that one stays until Sunday.

The surreal part of all of this is that we came in girded for battle, expecting major heart reconstruction and all the attendant risks that goes with it, and had a relatively "routine" procedure instead.  Even the head ICU nurse told me that they were all geared up for major patient care, and then when Erin "only" had the ASD closure, their position was this one's no big deal relatively speaking to what they deal with on a regular basis.  In spite of the routine nature of her surgery, it still has all of the trials and tribulations of heart surgery and recovery.  It is simply a tough journey that one has to go through to get to the end goal, a heart the functions more normally.  It's almost like you don't know what to do with the emotions and thoughts that had built up over how difficult and challenging and frankly risky this all was going to be, especially when it turns out to be far less complicated.  In the end, I have decided it is a very good problem to have.

May 10, 2013 part 2

Erin is out of the ICU.  She was moved into a private room on the same floor at just after 3 pm.  Of course the timing was just after she had finally fallen into a restful nap.  She only slept about 2 hours last night, and has had small naps throughout the day.  The good thing is that it is now 5 pm and she has slept for the past two hours.

She continues to have difficulty in processing enough urine output, even after a double dosage of lasix. The theory is that after throwing up so much and not taking in much in the way of fluids, she just doesn't have it to give.  Unfortunately, the downside is that the catheter has to stay in until tomorrow am.

She managed to keep some bites of an apple down, so that is progress.  Overall, everyone continues to be thrilled with her progress.  She even took a brief walk in the ICU, walking about 40 feet.  It's amazing that she can do that the day after open-heart surgery.  I had originally written major open-heart surgery, and edited out major when I realized that there probably is no such thing as minor open-heart surgery.

The new room is significantly larger, and has room for a cot.  She has just woken up, and is talking like herself.  She has had sips of both apple juice and water, and they seem to be staying down.

Asleep with Willy

Mommy waits for news with Piggie, Erin's gift from the hospital

Note the 98 in the lower right - that's Erin's oxygen level post-surgery.  Her normal levels have always been around 84.

In the ICU

A very tired Erin makes the migration to the new private room

Friday, May 10 2013

Erin continues to amaze, with a few hiccups.  To start, her breathing tube was removed yesterday after being in the ICU for only two hours.  It is not a pretty sight to see your child silently begging to have the tube removed, silent because they can't speak.  Luckily it was felt that she was doing so great that they could take it out.  Had she had the original planned surgery, it would have been in for 24 hours or longer, and she would have remained sedated for that time period.

Her biggest struggle has been thirst and hunger.  As I am learning, the anesthesia puts your digestive system to sleep, and it takes time to wake up and recover.  She couldn't keep any water down for most of the day, and still is having some difficulties.  Hearing your child beg for water and promising that she will try really hard not to throw up is heart breaking.  I spent the night in the room, and she only slept about two hours.  She is complaining of discomfort from all of the tubes and wires she has in her.

She brightened up when Mommy came back around 6 am.  She is eating jello and the ever present Popsicle, and trying to keep liquids down.

Dr Dearani and entourage visited this morning and was visibly happy over how well she is doing.  The plan now is to start pulling lines, and tentatively move her out of ICU today into a private room.  If all goes well, she could be out of the hospital in the Sunday/Monday timeframe.  Given the fact that we thought she would be in the hospital for up to two weeks, this is astounding.

I will report more as we know it.  And as always, we are humbled by the outpouring of support from so many friends and family.  It is incredibly helpful and means so much.  Thank you to each of you.

May 9, 2013 part 2

We just met with the surgeon, Dr. Dearani.  Bottom line is that after fixing the ASD, which he described as a very large hole for such a small heart, no further reconstruction was necessary.  The patch is the size of a dime.  After fixing the ASD and taking her off the heart and lung machine, her heart performed well enough that they felt that the bi-directional glenn (the major reconstruction part) was now unnecessary.  There was no narrowing of the tricuspid valve, and her heart was already much smaller with the leak eliminated.  It was the best possible outcome, and clearly Dearani was pleasantly surprised by it.

He told us that perfect is the enemy of good, and by attempting to repair the tricuspid valve he could do a repair that they consider a good one that wouldn't have as good a function as she has now.  So the choice was to leave the valve alone.  He found enough leaflet tissue that if a repair is warranted in the future, he thinks it would be relatively easy.  For now, the leakage of the value is minimal, and the existing leaflets have good function.  The blood flow through her heart is now normal, for the first time in her life.

Importantly, they only split the bottom part of her breast bone, versus the entire bone.  The incision is lower on her chest, and smaller.  The bi-directional glenn would have required a much larger and higher incision.  Scarring will be far less this way.

They are now closing, which will take roughly an hour, and then she goes directly to ICU where the team wants approximately another hour to get her settled before we can go up to see her.  Dearani said that with any luck, her breathing tube can come out today.  They had previously thought it could be in for up to two days.  Having been through ICU hospitalization with her before, I now know enough to know that there are absolutely no guarantees, and everything is fluid.  There will most likely be a great many changes to the plan ahead.

We are ecstatic over the outcome.  There is still plenty ahead, but for now we have the best possible outcome that we could have hoped for.

Thursday, May 9 2013

The waiting has begun.  Erin is currently in surgery, and they expect it to be there for anywhere from 4 to 6 hours before we see her again.

We arrived here Tuesday evening, with Erin in terrific spirits.  She was as happy and animated as I have ever seen her.  Wednesday began with a blood draw at 7, which she stayed completely stoic through.  We then followed that up with x-rays, EKG, allergy test, echo, cardiology consult, Social Services, Child Life Services, and then an hour with the surgeon Dr. Dearani.  The allergy test, conducted because she once had a reaction to an antibiotic, was challenging as they pricked Erin's arm in 8 spots twice in a row.  She never reacted or flinched, but later told us just how painful it was.  She is absolutely amazing.  She isn't going to let anyone see her react.

Dearani has had additional thoughts about her surgery after consulting with the cardiologist who did the echo.  They now have decided that fixing the tricuspid valve offers no upside and thus will be left alone.  They are going to fix the ASD, and then take some time to see how she responds before they do the bi-directional glenn.

Waiting for Dr Dearani

Erin was somewhat stoic throughout, and fell asleep during the Dearani meeting.  She fell asleep the first time as well.  I told him it must be something about him.

Erin's favorite store is Target (sorry Uncle Alex).  We noticed that they had a Super Target, which really made her happy (it had to be better because it was Super).  We visited and bought supplies and a princess costume for Erin, which she took great delight in wearing last night after dinner.

We had to be at the hospital today at 7.  She woke up in a great mood, and had yet another bath which included the prescribed 10 minute scrub with special soap.

Getting ready to leave for the hospital

We arrived at the hospital and Erin was given a new pink pig, immediately named Piggy.  She played in the play area until 8, when we moved into the OR prep area.  This was when it became very sobering for Erin.  Getting on the gurney caused her to be very apprehensive, although she didn't say a word.   

In the play room

Doctoring Piggy

Heading to the OR

In the prep room, we got her dressed and spent some time hanging out.  She was extremely clingy as you would expect, and very quiet.  She was scared and it was excruciating as a parent not to be able to comfort her or take away the fear.  The nurse took a picture of the three of us and printed it our for her.  Erin clung to that picture, looking at it constantly.  At 9 am, I put her on the gurney and after saying goodbye to Mommy we headed off to the OR.

In the OR, I transferred her to the operating table, and helped to take off her top.  She asked for grape flavored gas (she had a wide choice...I would have taken bubble gum personally), and accepted the mask while I held her hand.  She was out in less than a minute.  It was only then that she let go of the family photo.

She was worried I was going to doctor her

It took almost an hour to get all of the lines in her, which they don't do until she is out  .At 10:14, the communicator Colleen informed us that they had made the incision.  At 11:03, she went on the heart and lung machine.

And so we wait.