We’re Home

Notice Katie's toy...no pressure! (this was the morning of the cath)

It was a long, tiring, and frustrating day, but all ended well.  Katie had another echo this morning that confirmed that there was no serious damage caused by the tear in her aorta yesterday.  Dr. Asnes was satisfied with how she was doing and was all set to send us home.  He had one last examination, and yet again, Katie had to introduce some drama.  The pulse in her right leg was significantly different from the pulse in her left.  Fearing a clot or some other side effect of the cath, an ultrasound was ordered.  That was at around noon.   We were already antsy.  At about 2pm a lady came strolling in to perform the ultrasound.  She informed us that she had a handful more to do after us and that once they were all done she’d return to the lab to have the radiologist review the information.  At just after 4pm we got word that there was nothing to worry about and that we could go home…finally.  We left the hospital just before 5pm.

After a day of sitting, doing nothing, we left the hospital weary and grumpy (sorry to anyone I talked to around that time-  I was less than pleasant).  Strangely, we walked through the door at home and our dispositions changed immediately.  We were relieved and excited to continue living normally. 

Before we left the hospital we spent some time chatting with Dr. Asnes.  After the dust settled on a dramatic Tuesday, we were able to enjoy a more balanced conversation about what lay ahead.  It seems most likely that we will return for the angioplasty at the end of August and proceed with the 2nd Surgery in mid September. Of course this is possible (and in our case likely) to shift depending on what happens in the coming weeks.  The meeting with the surgeons this Friday may even impact this schedule so stay tuned. 

The best news of the day-  After over two months of keeping our head down and only working on getting things better I really wanted to know how Asnes thought the process was going overall.  How was Katie doing against the plan or hopes that he had.  The answer-  GREAT!  She recovered from the 1st surgery in a very short time and has grown dramatically since discharge.  Before yesterday’s hiccup (which Asnes was visibly disappointed and frustrated by) and after today’s clearance, Katie is on track toward a positive outcome to this saga.  There are many challenges yet to come, but we can only take on what is in front of us and so far we are doing just fine.

On a related note, Dr. Asnes is amazing.  Yes, he was “responsible” for yesterday’s mistake but he has been everything we could have hoped for from Katie’s doctor.  He is incredibly knowledgeable, welcoming, caring and most of all committed to Katie’s success.  You can say what you like about Doctors or hospitals, but this man is a genuine man who cares about his profession and cares about his patients.  We are very lucky!  Please pray that his judgments remain sound (and the surgeon’s hand steady).

Now it’s time for an early night…back to work tomorrow.

shocker

My Ladies (taken Sunday before our visit to the hospital)

Did anyone really think that today would go smoothly?  We got to the hospital last evening, settled in, and enjoyed a nice evening with a very chatty and playful Katie.  Katie even engaged every nurse and nurses aid in her constant babble…quite the social butterfly. As the night turned into morning, playful Katie yet again turned into evil incarnate.  To be fair, Katie had to stop eating 6 hours before her procedure, so by mid morning she was unconsolable.  It was rough and rather ironic.  If you think back to little over a month ago the goal of the game was getting petite Katie to eat with regularity.  Now we had to stop Munchkin from what she does best, eating.  Until they came to get her for her procedure Katie was NOT happy.  However, as soon as they started to roll her to the Cath lab, little Miss Inquisitive came back.  She was looking around, smiling, and she suddenly forgot about the hunger she was feeling.  That was around 11:30am.

At 4PM or so Vickie and I got the call to come meet with the doctors.  Although Vickie took the call, I just knew in my gut that all had not gone smoothly.  We met with Dr. Asnes and Dr. Fahey and learned that the concerns that they had for Katie were supported by the Cath-   I think, no big deal.  They go on to inform us about the narrowing of her aorta and how it is found in 30% of HLHS patients- I still think, no big deal.  Then he says that they went to perform the angioplasty- and still I was thinking, no big deal.  Then he said “but”…all of a sudden I knew there was a deal of some sort.  While trying to snake the cath into her aorta to inflate the balloon, they broke through her aorta wall.  The curvature in Katie’s aorta was so significant that the catheter couldn’t navigate the turn causing a slight rupture in her passage. Let the games begin!!!

So here we are tonight, back in the ICU.  While the accident didn’t create any grave consequences it has certainly muddied the waters.  An echo late this evening showed that the tear was not too significant and wasn’t causing extensive problems.  What the cath and the tear has done is call into question the long term functionality of Katie’s aorta as it is currently constructed.  We will either need to redo the cath in 2 weeks and perform an angioplasty, or go ahead with the 2nd surgery in 3 weeks or so.  Each option has its pros and cons.  The cardiology team is meeting with the surgical team this Friday to determine the path we will take.

We have, and still are, very fortunate to be progressing through this HLHS struggle so smoothly.  We have to be comfortable with fact that there will be complications, hurdles, and setbacks.  Today was a reminder that our prayers, vigilance, and steadfast dedication to the “finish-line” (3rd surgery) has to be maintained.  Katie is resting peacefully this evening.  We are still expecting to go home tomorrow but we go home with the knowledge that we will be back soon and a reminder that we have a long road ahead.

Vickie and I are doing quite well.  We’ve learned to adjust to these twists and turns.  Our immediate focus remains in the moment, and our long term vision is commited to the day Katie is living a normal life.  We don’t have time for “what ifs” or second guessing.  Interestingly, I am still happy tonight!  I wish we were happy somewhere else, but being with Katie is the ultimate happiness. I’d rather be here with her than anywhere else without her!

Side bar-  Many people have wished us well and marvelled at Katie’s strength.  People have said she is brave, courageous, special etc.  While all of those statements are flattering for her smitten father to hear, I have to tell you that I don’t believe there is anything about Katie that makes her better than anyone else.  I do think what makes her special is her capacity to maximize all that is good in the human spirit.  To say that she is somehow better than anyone else understates the capacity of others, and misrepresents the true impact that Katie can have on each of us. She is tapping into resources that lay dorment in many of us.  She is opening herself up to her truest capacity, and because her limitations have come at such a young age she doesn’t know what an excuse is or what a limitation could be.  if we are to learn from her, learn that you can.  Katie makes her Daddy proud every day, b/c every day I know she is doing her best.  I hope that this will continue for many a year to come.