In pursuit of a 4 chambered heart...Current plan...Version 8.0

 My brain hurts from the constant updates it is having to accept.
We have gone through so many new plans in the past 48 hours, it is difficult to remember all the versions.
The good thing is that I think we have a final plan in place now.

But first, some pics from LPCH that didn't make it on FB or the blog yet.

 Tiernan was REALLY impressed with the blueberry muffin he got the morning after his cath.

 They allowed us to take a walk on Wednesday morning and this little super hero was thrilled to be out of that bed!

 AND he found the carts he had seen pictures of Alex riding in and that made his entire day!!!

Of course after these photos, we spoke with Dr. Quan and we originally learned that they had actually rescheduled us to Friday.  So as we were adjusting to that news, Quan got the text from anesthesia saying it was off the table for now, and you already know that part of the story.

On to things you don't know yet.

This was the x-ray they took Tuesday night showing off his new longer coiling.  (the white lines on the right side of the image) This is important because Tiernan has been complaining of pain in his left side (same side as the coils) since Wednesday.  He was reluctant to use his left arm and said it hurt under his arm when I would lift him.  So I happened to mention it on a heart mom FB page I belong to, and a friend said her son had that after a cath that involved a lot of coiling and they found the coil had migrated and they had to go back in and revise.  So I just called NWCHC (cardio) and, as luck would have it, our cardiologist is the on call doc this weekend.  YESSSS!  So we talked and he had me check for perfusion in his fingers on both sides.  (that is, if I squeeze his finger nails, they go white.  how long does it take for the white to disappear.  this is called capillary refill time)  They were about even, so that is good.  He also had me check the pulse in both sides and they are good and strong.  So we will keep monitoring using those tests and then on Monday, J will take him in to get a new chest x-ray.  Stay tuned.

As for our plan of care:
J and I have to go back to work, because Dr. P can't ethically keep T2 out for any medical reasons right now.  He was comfortable sending him back to preschool and taking our chances since we are at the end of the viral season (just ended a week ago...about the time Tiernan got this stupid rhnovirus).  We were not comfortable with those odds and so we have rallied the troops and have a series of amazing helpers coming in to hang with Tiernan through the end of May.  J's cousin Michelle and her unbelievably sweet little chihuahua, Jazz will be staying with us starting tomorrow night.  Then J's dad, Kirk/Pops will come the next week, and Kathy/Grandma will take the following week.  This brings us to the end of May.

At this point Dr. P will do a nasal swab (cue menacing music) and we hope and pray and do special dances that he comes up virus FREE!!!!  At that point Dr. P will write me a letter to excuse me from work for the last 12 days of the school year to KEEP him healthy for that July 18th date.
If the swab comes back positive for something, Dr. P will call Packard and describe what the test says and also what he sees clinically for them and let them decide.  They will either say, excuse mom for work and keep him home and healthy for the July 18th date (still roughly 6 weeks out) or they will say nope.  no way.  reschedule....again.
If that is the case, then there is no reason for us to keep him from daycare and me from work.  I would just be using up the sick leave I will need for next fall, since we would be needing time off then.

Needless to say, (but I shall say it anyway) we are just a little stressed about this next 3 week window.  We are grateful beyond what words can express for the help from family.  But this is crazy.

So.  We will be pretty isolated.  Especially Tiernan.  Not to sound rude, but if you have even the slightest inkling that you might have something or have been exposed to something, please stay far away.   I think we all have a deeper respect for the seriousness of this little guy:

We can't afford to underestimate the effects it, or something worse, will have on Tiernan.  

So we shall be showering in Purell, and I am absolutely duct taping a giant bottle to the entrance of my choir room as well as the exit.  Gel In Gel Out (GIGO) people.  I shall refuse all forms of interaction that involves touching other humans for the duration.  I may also need to learn to play my piano while wearing medical gloves so that I can just keep them on 24/7.   

Excessive?  

Maybe not.

Feel free to send me your favorite disinfecting methods and cleaning tips.  It shall be constant.

Through it all, Tiernan has maintained his sense of silliness and definitely has a positive outlook.  So I leave you with these.  

  Love that little purple smile.