mysid: (Donate Life)
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.
mysid: (Donate Life)
My daughter recovered from her liver transplant in record time--and now we're paying for it (in the karmic sense). We're two weeks into the new school year, and I think she's only gone to school for 3 1/2 days. (She's a freshman in high school, and she really wants to go to school!) Her symptoms are vague (back pain, abdominal pain, nausea, dizziness) making a diagnosis difficult. Tests have been run, so we've been able to figure out what it is not (rejection, pancreatitis, appendicitis, intestinal blockage, etc.), but we still don't know what it is.

Yesterday, we spent twelve hours in the Emergency Room, and in the end they sent us home still having no clue what's wrong with her. They knew it wasn't anything immediately life threatening, and they had no good reason to keep her--especially over the weekend when her doctor wouldn't be there. But for my daughter, that was the breaking point. She's never gone to the hospital and not gotten a diagnosis before; she's never gone to the hospital and left feeling worse than when she came in before. Upon hearing that she was being discharged, she broke down crying.

I had an idea when we got home, so we're about to test it out. Most of her symptoms might be explained by her intestinal flora being thrown out of whack by the antibiotics she's taking. She used to take acidophilus, but the doctor had her stop when she had her transplant. I just asked the doctor to let her resume taking it. Cross your fingers that it helps!
mysid: (Donate Life)
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.
mysid: the name mysid on a black and white photo of two children with a tricycle (tricycle)
Last month, we learned that my daughter's MELD score (a way of measuring how badly someone needs a new liver) had been increased from 25 to 30. We'd been told years ago, when her score was zero, that people generally start being offered a new liver when they hit 30 or above.

Due to her new, higher score, we were told that we need to keep the liver transplant coordinator aware of any trips we take several hours away. We could still go away (within reason) but if we were farther away, they'd call us earlier in the selection process so we'd have time to return home.

On Saturday, we got home from a trip that we'd informed them about (7 hours away). This morning, the liver transplant coordinator called to say that they've been offered a liver. She explained that they plan to offer it to another patient, but if that patient doesn't work out for some reason, Elizabeth is next in line. She wanted to make sure that we were currently local, and that we plan to stay local today.

Wow. We've never gotten a call like that before. Perhaps she wouldn't have called us today if she hadn't wanted to double check that we were home. But still...we got a phone call about a potential liver!

I told my daughter. She said, "Scary." I agreed. Then she asked, "Can we run away?" I told her we couldn't and gave her a kiss on the head.

(BTW, I could only kiss the top of her head because she was sitting down. My fourteen-year-old daughter towers over me.)
mysid: the name mysid on a black and white photo of two children with a tricycle (tricycle)
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 or at my previous message here.
mysid: the name mysid on a black and white photo of two children with a tricycle (tricycle)
Since last fall, Daughter has been on IV antibiotics for the apparently incurable infection in her liver's bile ducts.(1) She got an infusion every six hours, and each took about 45 minutes.

Doc didn't want the bacteria to develop an immunity to the antibiotics (as happened with a previous drug combo she was on), and wanted to wean her down to less heavy-duty drugs, so we are currently trying an alternate combination of antibiotics which (hopefully) will work as well. However, this combination requires three antibiotics, one IV and two oral.

Her schedule:
5:30 am- IV antibiotic (She sleeps through it.)
7:30 am- oral antibiotics A and B (and then she catches the school bus)
3:30 pm- oral antibiotc A and iron supplement (as soon as she gets home)
5:30 pm- IV antibiotic
7:30 pm- oral antibiotic B and 5 other medications she's on (Iron can't be taken with "B", so it was taken earlier.)
11:30 pm- oral antibiotc A (I have to wake her for this.)

I have this written on a white board in my kitchen, or I'd never keep it straight.

(1)There is one cure for the infection: a liver transplant.
mysid: the name mysid on a black and white photo of two children with a tricycle (Default)
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.
mysid: the name mysid on a black and white photo of two children with a tricycle (tricycle)
When I saw this t-shirt,"I Married My Stalker", there was only one person who came to mind, Bella Swan in Twilight. If you haven't read this "romantic" series aimed at teens, trust me, Edward is so Bella's stalker. And we're supposed to think it's a good thing that he watches her sleep, follows her wherever she goes, and longs to hear her thoughts. And yes, she does marry him eventually.

And does this t-shirt strike anyone else as naughty? I can imagine Justin wearing this while working at the diner. A tight version, of course.

But this I Heart Organ Transplants (with a real heart!) is the one I want!


mysid: the name mysid on a black and white photo of two children with a tricycle (Default)

December 2012

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