There will be a memorial service for Lyra, on Tuesday, November 23rd, at 1:00pm at the Mitchell Funeral Home located at 7209 Glennwood Avenue (rt 70), in Raleigh. Their phone number is 919-783-7128.
In lieu of gifts or flowers, we please ask that you donate to the Duke University Hospital Pediatric Intensive Care Unit. To do so, please send your donation to:
Duke Children's Hospital
c/o Edith Rosenblatt
Box 3417
Durham, NC 27710
Please enclose a note that states "To Duke PICU Staff, In memory of Lyra Judith Mori"
Thank you.
Early this Sunday morning Maren and I were called into the hospital because Lyra was becoming unstable.
Lyra passed away peacefully in her mother's arms around 7, just as the sun was rising. She hung on as long as she could so we could say good-bye.
Maren and I are grateful to everyone for all the love given to Lyra during her 9 months with us. We are especially grateful to the Duke PICU staff for their wonderful care.
We are planning a memorial service early this week.
We've posted more pictures for everyone to enjoy.
Just a quick schedule update. It now appears that if we agree to the surgery, it will happen not today or tomorrow, but first thing Monday morning.
We'll be keeping that positive energy through out the weekend, so keep it coming.
I try pretty hard to keep these updates as informational as I can, but today could be a very hard day.
Lyra had been recovering fairly well up through about mid-day last Sunday. They had weaned some medications off and were working on her ventillator. It felt like they may have been getting close to taking that off too. At some point Sunday afternoon, Lyra had a small emergency that required a lot of doctors to get her stabilized. The details are immaterial at this point, but the result was that her doctors had to reasess what was going on with her heart and lungs.
After some testing and time in the cath lab, they discovered that Lyra's collateral arteries are disrupting blood flow to her right lung and that with things configured as they are now, with the Glenn, she won't recover this way. Even if she managed to, her body would be driven by the collateral arteries, which would make her unlikely to get to the third stage surgery.
What may happen today, but possibly not until tomorrow morning is for her to undergo surgery number four, which will drop her back down to a shunt physiology. Essentially taking her back to what she was after stage I. There are many challenges with doing this, the biggest being her problems with clotting and bleeding. I think everyone can read between the lines here, the outlook isn't very promising.
But, we're going to stay hopeful. Lyra has surprised many doctors with her resiliency. She's a tough little girl and we fully believe that if anyone can get through all this, she can.
Maren and I appreciate all the good will and positive thoughts we've gotten from so many people. I hope you all can send us some more of that today, because I think we're going to need it.
It's been a little over a week since the last update and a lot has happened. First, just to let everyone know, Lyra is doing fine. She's still in the PICU, but a number of things have been weaned off of her and she's resting comfortably.
In the last update, I explained that Lyra was having some issues regarding the clotting of her blood and that she had been put on some anti-coagulating medication in response to this.
She was on that medication for a few days and then another cath was performed, which they basically just took a couple of pictures to see how the actions done during the previous cath had held up. The good news was that her pulmonary arteries had not clotted off and were open. The bad news was that the ballooning of one side had caused a small tear and resulted in a pseudoaneurysm. Her doctors feel confident that the pseudoaneurysm is contained well and should clot off and resolve on it's own, but there were some scary discussions about what could happen if it didn't.
The second problem that cropped up was that she has developed an immune response to one of the drugs used to keep her blood from clotting. It's widely used in just about everything, from keeping her IVs open, to keeping the lines open during caths and therapeutically to keep the areas affected by the surgery from clotting too much. So, this has become a pretty big hassle as Lyra now clots pretty quickly, meaning that her lines (like IVs, but some are longer, and have more than one "port") don't last very long.
It's been about a week since this problem was discovered and since then much has improved. Lyra has gotten a lot of the excess fluid out of her body and is starting to finally look more like herself. She has had a few technical difficulties associated with her lines, needing them replaced, or reopened if possible, etc.
They're slowly working on weaning her off of the ventilator, which would be great, because then Maren and I might be able to hold her. Things are moving forward, maybe at a glacial pace, but progress is progress.
Finally, the address to this site has changed, so please update your bookmarks. The other address will continue to work for a while longer.
The new address is: