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.

Making a U turn

And just like that, we are headed home again.
Tiernan has "Rhinovirus".
But don't bother researching this scary condition.  It is a simple cold.
Unless you are scheduling a massive reconstructive open heart surgery.

So on Monday, we arrived and went straight into Pre-Cath testing.  We mentioned the runny nose and this prompted the nasal swab which came back pos for this hideous virus.
They went ahead with the cath because lab reports had come back fine...CBC and CRP for those of you who would know.  The swab culture hadn't come back yet but everything still looked good so they proceeded with the cath.  Cath went well, as you already know, but the piece of the puzzle that hadn't really made it into the news until later this morning was that Dr. Boltz (anesthesiologist) suctioned some yellow gunky stuff from his lungs when removing the breathing tube.  This was what sealed the deal.  Despite the fact that, clinically, he seemed pretty much fine, the team is definitely not okay with doing this surgery.

 As Dr. Obayashi said, "It's for the best, though, since you don't want to put him on bypass with an active viral lung infection.  He could develop ARDS (badly damaged lungs), which could single-handedly make it so he doesn't survive."

And that, as they say, is that.
No body wants to risk that.

So now we have new orders...6-8 weeks of waiting and getting healthy and a new date on the books.
July 18th.
July.
Ugh.
It could be a little earlier.  If there is a cancellation and it happens to work for us to get down there.
But....July.

Now, the big question is whether or not I go back to school.  From our cardiologist, Dr. Park, it seems like it would be okay for him to attend pre-school through the end of May.  At that point we would figure out if I need to take of the last few weeks of school, or if we have family who can come and stay with him.

More to follow on that tomorrow.

Please share this, if you have friends and family praying and invested emotionally in our story.  That means so much, so thank you.  But I'd prefer if the updates appear via my blog.  That way everyone is getting the same information.

We are all emotionally spent from these last few days....especially today.  But as I said before, we are confident that any other choice would be, in Tiernan's words, "Unasseptabole".

Stay tuned!

A successful cath day

Big day.
Tiernan did an amazing job for his cath this morning. He took his pre-med (versed) like a rock star and was nice and calm for the mask. First. Time. Ever. I know it had a lot to do with the child life specialist, Jess. She explained things so well to him and let him play on an iPad (key to his heart these days) and he got to decorate his "sleepy mask" with stickers. She also rubbed a scent on it so it smelled like grapes. In the past, he has always fought the mask in spite of the versed. This time he stayed nice and calm, even though I knew he was pretty nervous. Very brave.
As far as the cath results:
Coarctation is definitely in need of another reconstruction. The pressure above the CoA is 100/40, while the one below is 80/40. This means the gradient is 20. (Difference between the top numbers). anything 20+ is in need of attention, so Hanley will go ahead and address that in the OR.
Collateral vessels were needing more coiling. The coil from back in August was allowing blood flow still. So Dr. Peng coiled it again and all the way up and down so it's good to go.
AVMs (Arteriovenous Malformations) are around the right pulmonary artery. They are allowing the blue blood (oxygen poor) to flow quickly around the Glenn which allows it to return to the heart without a stop at the lungs. This just means that his blood is a little more desaturated. I think Peng said that this would not affect a bi-vent but may cause a little trouble for a Fontan. That is fuzzy though. I honestly have only heard of AVMs in the brain though so I'm still confused.
Glenn is okay but slightly narrowed. This is causing a subtle gradient of .5-1. They don't get concerned until it is 3+.  Peng believes this will be corrected by either the bi-vent or the Fontan.
Overall, Dr. Peng feels the cath supports the case for bi-vent as the strongest choice. That being said, they still cannot be certain until they get in there.
We also spoke to a Physicians Assistant (PA) named Amy Bruce. She explained the bi-vent but also the 1.5 repair. We had never heard anyone mention that before, but the gist is that they septate still but leave the Glenn in place. This means they take down the DKS, allowing the blue blood to go from the body thorough the heart directly to the lungs. The Glenn just continues to  flow into the lungs passively: without the heart having to actually pump the blood to the lungs.
If they don't think it's safe to do either septation, then Hanley will definitely still do the CoA and address the leaky tricuspid. As to whether or not they could just do the Fontan, they seem pretty concerned that it would increase the difficulty of the recovery. As Peng put it, with Fontan circulation really need everything inside the heart to be pristine. So if that valve is done and not allowed time to be tested, then the Fontan could be compromised. The arch is another factor in this.
So the docs are meeting this am to finalize the plans but so much depends on what Hanley sees interoperatively.

Tiernan had a decent night. We are in a shared room with a newborn right next to us. This baby is a lot like tiernan was as a baby. Cries a lot. So Tiernan woke up with baby boy most of the time. Makes me sad when I see the babies with no parents staying with them.
T has been pretty emotional. Very brave but emotional. He definitely lets his feelings be known. Nothing new there. He had an X-ray last night and did pretty well, even though he cried. There is so much happening and he is definitely overwhelmed.
He's eating well, post cath and only complaining about his IV hurting so his nurse is going to take a look and maybe even take it out. Here's hoping.
My parents are nearly here so that will be a fantastic boost for all of us.
Thank you all for your continued prayers and words of support. It means soooo much more than you could possibly imagine.

May the Fourth Be With Us!

We are on our way!!!
This has been a most stressful, yet incredibly humbling experience. We are in awe of the generosity of our friends and family as we embark on this exciting but terrifying journey.
I have gotten to see the scope of my students' appreciation for me. It is such a gift to work with 10-13 year old kids. They are difficult, don't get me wrong. But they are fierce in their adoration. Lol. I was overwhelmed by the gifts which ranged from verbal declarations of their love, to rainbow loom bracelets they made (I was beginning to feel like I was back in 1985 with jelly bracelets up to my elbow.) to coffee mugs and the SWEETEST crocheted bunny made by one of my 6th grader's GT Grandma Dolores. 🐰.  There are so many notes and posters with their thoughts that I cannot even read yet because I will miss them so much. One of the most wonderful was a song, composed and sung by my sweet Kate who will go so far with her MANY talents.
And then there is the unbelievable financial support from our colleagues and friends and family. We can not begin to express our gratitude. It has lifted so much stress from our minds.
So as we are driving today, we get a call from the Ronald McDonald House. (RonDonHouse). As many parents who have been through this know, it is often difficult to get a room. It hardly ever happens right away and it sometimes never happens. The good news is that we have a room waiting for us tomorrow!  I can hardly believe our good fortune!!!
Tomorrow Tiernan has a pre-cath appointment. I guess this means an echo and EKG.  Then a cath on Tuesday at 11:30. This was a change from the initial plan, but Hanley and his team said they need more information about his arch and the gradient. (Difference in pressure above and below the coarctation.) I know it's all in the name of being as prepared as possible, but it's another anesthesia and another recovery, albeit short.
We will hopefully be discharged post cath to stay at RonDon. But on Wednesday is the pre-op appointments and then we are the first and ONLY case on Thursday. This is good. But it also just proves how enormous this surgery is going to be.
We will be so fortunate to see such good friends through this process though. We will eat dinner with Kari and Adam McGrew and their family. (You may remember reading about their super boy, Joel)
And tomorrow Kristen Dill will meet us at LPCH. We first met her when she was Tiernan's nurse in the Mary Bridge PICU. She has since moved to LPCH to work in their CICU and will be  big support to me as a wonderful friend.  (Who happens to know the score)
We are also looking forward to the new friends we will make. I already have an important connection with a family who's son had a transplant at age 13. (He's in his late 20s now, i think). But they live in Palo Alto and we will see them often, I hope. The connection to the Vassers is so fun though, because they are family of our longtime friends, Jeanne, Steve, Olivia and Amanda White!  So interesting to see how we are being brought together through CHDs.

So brace yourselves for a massive increase in updates here. There will be MUCH to share.

Thank you for all your prayers and support. We feel it!!!!