mysid

OK, I've been putting off this post for a while because (A) Children's Hospital blocks my access to LJ (And DW) so I couldn't post "live", (B) you're probably getting sick of "My daughter is sick" posts, and (C) I had to gather my thoughts. But I couldn't avoid it forever. After a hospitalization, I always feel like I can't post anything else until I've done a recap, and eventually it gets a bit silly how long I go without posting.

The short version: A few days after the Emergency Room Visit of Hopeless Despair (TM), we went back to Children's Hospital (CHOP) for an endoscopy. It was supposed to be an outpatient visit, but the doctor discovered that my daughter's GI tract was severely irritated for most of its length. That, plus the discovery of various viruses in her bloodstream (the cultures were in from previous week's blood tests) indicated a severe viral infection. Daughter was admitted to the hospital to get IV antiviral medication. (She was already on an antiviral, but this was more targeted to the viruses she had.) We ended up staying six days.

In a way, it was kind of a kick in the pants. We knew in an abstract way that the immune suppression drugs she has to take to avoid organ rejection would impair her ability to fight off illnesses. This was the first time, but undoubtedly not the last time, that we saw exactly what that means. She caught what should have been a minor virus, was severely sick for a month, and hospitalized for a week.

She's now been out of CHOP for six days, and doing wonderfully. I think she's finally ready to go back to school tomorrow. We're a month into the school year, and she's only been there for 3 1/2 days so far. The school just started sending tutors for Homebound Instruction, so they should help her get caught up.

She's been so amazing.

Last Friday, my daughter and I were making dinner when the phone rang. It was the CHOP liver transplant coordinator saying that they had a liver for my daughter, E, and we needed to get to the hospital. To say that I was taken by surprise would be an understatement. I told my daughter, she looked as shocked as I was, and we went into a flurry of getting ready to go to the hospital.

The entire thing could not have gone better. The new liver was from a young donor, was very healthy, and was a perfect fit for E's body size. E stayed stable throughout surgery and did not even need a blood transfusion. The new liver began working immediately, and E began to recuperate with lightening speed.

E wasn't in liver failure yet. She qualified for a transplant because of the chronic infection in her liver for which they were running out of antibiotics that worked, and because her cirrhotic liver was at high risk for liver cancer. But because she went into surgery relatively healthy, she bounced back quickly. We were told to expect a one and half to two week hospitalization, longer if there were complications. Hers was one week.

Our family, friends, and neighbors have all been offering to help by taking care of my younger children, taking care of our dog, sending us food, etc. Many, many more people, both people I know, and people who just know of us through others have been sending us their good wishes and prayers. (I may not believe in prayer, but it's the thought that counts.) I'm grateful to them all.

But I'm inexpressably grateful to the family of the donor. It was their selfless gift that saved my daughter's life, as well as the lives of several others who received the other vital organs.

Have you made the decision to be an organ donor yet? Have you talked to your friends and family to tell them of your decision? Thousands await the gift of life. Don't wait until it's too late. One donor can save eight lives and improve the lives of many more.

Read more about organ donation at organdonor.gov or at my previous message here.

Elder Daughter came home from school on Thursday with a fever and other symptoms that her cholangitis (an infection in the bile ducts of her liver) is back. Her liver doctor had her come into Children's Hospital on Friday so they could take a look at her and run blood tests. Doctor put Daughter back on antibiotics for at least a month, but she didn't need to be admitted. (Yay!)

I must say it was nice of Daughter to get sick when she did rather than earlier in the week. It was my first week of school, and I taught Monday, Wednesday, and Thursday this week. A Friday hospital visit worked out very well for me; I didn't have to miss a day of work.