Current UPDATE (via caring bridge post written by Keenan):
5.23.14 - Care ConferenceBy Keenan Sanders— May 23, 2014 4:05pm
It was a long week. With little happening in the ICU (which is usually a good thing) we had time to review Leighton's situation and ask some really hard questions. What would her quality of life be like should she make it through all of this? How long will she live? Will she ever make it out of the hospital? It's been a lot to carry, and the unknown is absolutely terrifying.
We met with several different doctors and departments throughout the week to discuss her future of care, but the most important meeting was yesterday. We had a "care conference" with the oncologists, general surgeons, transplant surgeons, MDs, social workers, and ICU team. I swear every doctor in this hospital has been involved with Leighton's case at one point or another.
My main questions were focused around what her quality of life would be. We'd spoken to several doctors individually, but never all together. The impression we had was that a transplant was imminent, and if it did not take place sooner than later she would not survive. Dr. Horslin, the GI/Liver specialist had said he was "optimistic" about her chances with long-term TPN, but I didn't understand what that meant. My understanding was that TPN was hard on her liver, and because her liver was so weak, she wouldn't survive very long on IV nutrition. Perhaps not long enough to even have the option for a transplant if her body didn't get stronger and healthier.
My understanding changed at the care conference. I asked Dr. Horslin specifically if Leighton could survive on TPN long term, and if she did what her quality of life would be like. He said that while they do not have a crystal ball, and it is impossible to predict how long any child will live - even a healthy child - it was more than possible for Leighton to have a full life expectancy on TPN. He said that he fully expected her to have "a life of quality." Yes, there will be things she cannot do, but there will be plenty of things she can do. I asked if she would develop normally and he said yes, he expects her to develop normally. She will have a g-tube and a hickman, and for several years she will be connected to her IV bags 24/7, but other than that she will be a normal kid. I'm not naive enough to believe there won't be frustrations, complications, and issues along the way, but the fact that they have several patients living on TPN who rate their life as "excellent" made me feel better.
If she does well on the TPN, the transplant isn't mandatory. It's something we can discuss as she gets healthier. There are pros and cons to a transplant, and it's a bridge we've decided to cross only when we get there. Thinking so far ahead tends to overwhelm us, though it is almost impossible to avoid.
Dr. Hoslin is arranging for us to speak with families who have children on TPN. I'm terrified to meet with them, but trying to take it all in stride. He came in this afternoon with a photo of a seven year old girl who never had any bowel function, and had liver disease when he started treating her. She's lived her entire life on TPN and she looked like any other adorable 7 year old. Actually, she was above average on the cuteness scale, another thing she and Leighton have in common. :)
Dr. Gow came by this morning. There is nothing on the schedule for her next surgery just yet. He's thinking we will do it sometime in mid-June. If that goes well (aren't we due for one that goes well?!) we could expect to be in the ICU a few days, then down to the main floor while she recovers, perhaps 3 weeks total in the hospital. It's not realistic to expect to return home for at least another 6-8 weeks. I would be shocked if we were home by Dave's birthday on July 26th, but it sure would be nice.
In other news, Leighton's stitches were removed today and they're thinking of moving her from the ICU to the GI Ward where Dr. Horslin is. I have no idea what that means, but he doesn't want us to move until after the holiday weekend, so we're camped out in the ICU a few days more, which is fine by me. There's comfort in knowing Leighton has round the clock, personal, care. Plus, we have the greatest nurses. I need to send them wine by the caseload.
*Right now, we can contribute monetarily, not only to show love and support, but to take a teeny tiny bit of stress off of these loving parents. Keep the prayers coming, the positive energy, and feel free to pass this link along to anyone you think may want to show their support. Please continue to spread the word about Leightons story. Let's stand behind this sweet little girl and her family.
Keenan, Dave, big brother Logan & sweet little baby Leighton, you have so so so many people constantly thinking about you all, your entire family and your loved ones..... All of us are on the edge of our seat rooting for you, baby Leighton. Keep fighting little girl!
Feel free to visit their caring bridge site, as well. Her family will update when they are able (please note, any donations made on Caring Bridge DO NOT go to the family, but to the site itself): http://www.caringbridge.org/visit/leightonsanders
There will be a fundraiser at Luci in Kirkland on Sunday June 1st, https://www.facebook.com/keenansanders?fref=ts#!/events/1409464486004913/1412457009038994/?notif_t=plan_mall_activity
Lucia has offered to donate a portion of all proceeds that evening, to the Sanders family. Please call ahead and make a reservation, (425.889.0200) bring your friends, family & loved ones. Perfect reason to enjoy a delicious meal out, for a wonderful cause~