Today he made another giant step towards going home with a fully functional four chambered heart.
I've been thinking a lot about our story as we tell it over and over again when a new nurse comes on shift. The past nearly 5 years have always, ALWAYS been in God's hands. And it isn't that I doubted that, but so many times it was difficult to see the purpose in certain things.
Believe me, I still don't understand God's purpose in the suffereing, but I know His hand guides Tiernan's life.
Thinking over why we have been shuffled from one hospital to another for each surgery, I think it was all in God's plan to bring us here to Dr. Hanley, knowing that THIS would be the perfect timing for Tiernan's heart to be made whole.
I think back to when we learned that Dr. Woods would be leaving Mary Bridge and how devastated we were. Dr. Woods was the perfect surgeon for that moment in Tiernan's life. But if he hadn't left, then we would never have considered coming to Dr. Hanley. And as good as Dr. Woods is, I don't believe he could have done what Hanley did 7 days ago.
As strange as it sounds, if it weren't for that big, floppy, ugly AV valve of his, we would have probably been content to stay at Seattle Children's with Dr. Chen and never have thought twice about the Fontan. But the severity of the valve made us turn to Hanley. And I guess now I am so grateful for that.
And honestly, in an attempt to find purpose in this suffering, I guess we just look for the how Tiernan's story touches so many others. He gets to be one of those cases for so many doctors down here to look at and realize what is possible. I hope this is true anyway.
But enough of that. On to the events of the day.
Tiernan is, as you can see, sans ventilator. SO. Exciting!
He really held his own during the CPAP trial (breathing on his own with just a little support since it's like breathing through a straw).
I think doctors and nurses are often a bit apprehensive with Tiernan, but Julie, his Nurse Practitioner for the day was definitely nervous. She got things moving right along. She said she hoped to have it done by 3, which in ICU time means more like 5. That sucker was out by 2:35! He has been on the high flow and they have already weaned him down to 60% O2. He is oxygenating like a total rock star and surprising everyone. They have d/c'd the Milrinone (heart) and the Dex (anxiety med) is lowered. He is done with his antibiotics and will be going down on the Morphine as well. Everything else, Ativan, Tylenol, Lasix and Aldactone are all PO (by mouth) so they can hopefully pull the IJ line (neck) tomorrow.
They pulled his NG tube at the same time as the breathing tube so hopefully they will be able to get him off the high flow and onto regular nasal canula O2 so he can drink and eat. His first words have been to ask for water. Unfortunately, he still can't have anything. He's at a higher risk for aspiration on the high flow.
He still has all three chest tubes in, but he is on the right path with those. The output is minimal and we hope he can get rid of at least 1 as soon as tomorrow.
Once he is eating and drinking, taking all meds PO and on regular Os, then they can move him on up to the West side. 3 West, that is. That is the med/surg recovery floor. Once there, we can sleep in the room with him and we will really be on the road to discharge. I would love to say we will get our CVICU eviction notice by Monday. But who knows.
Right now, Tiernan is as comfortable as possible (although he drives his nurses crazy by never staying put where they want him. hahahah! No one who knows him is surprised.
He is really hoarse and doesn't really have much of a voice, but it will come back within a few days and then everyone will probably be wishing it hadn't.
He is just starting to stay awake for little bits of time, and even then, he is mostly resting with his eyes closed. The RT and nurses keep trying to get him to open his eyes and he refuses. Until they give up. And then he'll peek out at them but shut them just as soon as they look. haha. What a turkey. Again, I'm so thankful to see that Tiernan humor and spark returning.
I try to get him to look at the cards that people have sent, but he doesn't keep those eyes open much for me either. I just read the messages to him and describe the picture. Thank you all SO much for taking the time to send them. It is so encouraging to see all those people are out there cheering him on!
One thing I love about LPCH and Stanford Hospital is all the beautiful artwork they have everywhere. This particular piece of art is at the entrance of the CVICU.
I love it. It is perfect. I think I need to get a print of it for our home.
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