Jackie had a long night last night. She was changing diaper after diaper and she didn’t sleep a minute. Rafi declared at a little after 1am that she was done sleeping. Then again, she told Jackie the same thing again a little after 4am. While there was diarrhea, Rafi did not vomit. This is a big victory. It is our hope that we can control the vomiting, in order to spare her esophagus, by having her on two separate anti-nausea medications and by venting her Gtube regularly. I am sure we won’t be successful all the time, but sometimes is better than never. Rafi also needed a dose of Lasix last night as she was not meeting her urine output requirements. Quite frankly I don’t really have a great understanding of the math behind that. She would generally meet her two hour marks but not her shift change marks????? It doesn’t matter, Lasix is harmless when wearing a diaper. Because she spiked a fever, Jakie had to take her to a different area of the hospital for an x-ray. Finally, Rafi needed a blood transfusion last night. She is going to get plenty of them so it wasn’t surprising or worrisome.

The night however, was far from a prelude to the day. Rafi had a great day. Which means Jackie and I had a good day as well, although I have no idea how Jackie was still standing by 3pm. While Rafi did have some fevers (high as 101.8) she was in good spirits, laughed a lot and went through a completely successful bandage change. We decided to only do half the body at a time (lower half one day, upper body the next). Today we changed the leg and feet bandages and tomorrow we’ll change the arm and chest bandages and wash her hair. We gave her Dilaudid, and a small dose of Ativan today and it worked really well. We hope this type of success will continue. The only problem is now we are doing bath and bandage changes every day. At first I didn’t like the idea because that meant giving her the Ativan and Dilaudid every day, but then I came to my senses. It’s not like we have anywhere else to go or anything else to do and she is going to eventually be on a continuous pain medication drip anyway. In the end, it’s a win win.

I took a very funny picture of Rafi today. She was wearing her original Hello Kitty sunglasses, you know the purple ones all over the pages of People and US Magazines, and I had the camera out so I asked her to give me the thumbs up. Of course she did this because she is a total and utter ham for the camera. I’ll post the picture on the site tomorrow when I am at home. It’s just one of those pictures that can really make you smile. Here’s one other thing that really made me laugh today. She told me her finger hurt, so we did our little stretching exercises, which makes her feel better, and when we were done I looked at my hand. Rafi tapped me on my forearm and says to me, “Daddy, your finger hurts? You want Tylenol?” It was a good think I didn’t have any liquid in my mouth because I would have sprayed her.

So, tomorrow is transplant day. Do I really need to say more than that? I don’t think so. So I won’t.

Jackie and I really appreciate all the good wishes, thoughts, prayers, emails, guestbook entries, text messages, phone calls and voice mails. It’s been really heartwarming and great to know so many people stand with us in this fight. I know one day Rafi is going to read over this site and she’ll smile. She’ll know how hard Jackie and I worked to get us here, she’ll see the trials and tribulations and most importantly, she’ll know how many people cared about her and she’ll feel good knowing how important she was to so many people. For that I thank all of you, you’ll have made my daughter’s day some time in the future.

The other thanks I want to express is to the families who have come before us. They did not have the benefit of being able to read daily updates as Jackie and I have. They are the real pioneers of this procedure. But what I really want to thank them for is their willingness to be supportive of us at any time of the day or night. I have now met 4 of the 6 families who have undergone this. With one other I have emailed and I look forward to meeting him and his daughter one day. Without exception, each has offered their sage advice, their experience, a shoulder and their phone numbers. I can’t express my gratitude well enough. What I can do is say, others are coming here after us, some without their spouse and with other children and I promise to try and help them as best I can.

By the way, I just want to say how proud I am of my wife. I don’t say it enough. But I will say this, there is no one else I would rather have in my foxhole. I love her a whole lot.