Sunday, August 28, 2011

Same old, same old

Today was another decent day. No blood pressure issues but I think this was mainly because her arterial line was not showing a decent reading for most of the day. Luckily, they were able to get some decent cuff pressures today despite the edema. Her sats weren't beautiful but they worked. Her heart rate also got to one of the lowest points that I've seen throughout her hospital stay (averaging around 155-160 right now, which is really low for her.) The doctors have decided to move much slower on attempting to ween her vent or pressers in order to create a constant so they can test out the newer meds for the lymphangiectasia and see how they are working. They had to gradually up these meds but they are finally at a therapeutic level tonight, so now we just wait and hope they start working. She's still on diuretics and they seem to be helping a bit but not significantly. If these new meds start working, they will also help get rid of this edema. I also just realized I used the word decent 3 times in the first 3 sentences. This was not intentional but it pretty much sums up the day.

I came into the day a little bit depressed but for an entirely different reason than before. Last night when we were walking "home" we met up with a few people we know from the Ronald McDonald House in which we are staying. I should probably explain what a Ronald McDonald House is for those that are unfamiliar. Basically, it's a house that's run by a charitable organization that gives people who are in our situation a place to live for cheap. Essentially, it's a house full of people who are far from home and dealing with extremely ill or dying children. You can imagine how wonderfully cheery this place is. Anyway, we stopped to talk to these people and hearing their stories brought us both to tears. One of the families is from England and they are here because their 4 year-old has cancer and they've run out of treatment options. The other family is from Palmdale and their daughter, who is also 4, has leukemia and they are basically at the end of their treatment options as well. I think it really hit me last night that our daughter is that sick. We are not unlike these other people. Our child's life hangs in the balance just like theirs. The thing that is distinguishing us from them is the amount of support we have from our families, our communities and our friends. I can't even fathom how we could be surviving this without everyone. It's a very humbling experience and I know that both of us are changed forever.

An example of this - Dan and I went to a church today. Granted, it was a small non-denominational church in Hollywood that was very, very relaxed but we went. The entire service was about love and the different kinds of love in life. I actually enjoyed it because it was non-preachy and almost a college-style lecture. There was also a lot of singing that was very representative of different cultures (The choir actually sung songs that were African American, South African, Brazilian and American in culture.) The congregation also shared good and bad things in their lives and asked everyone for prayers and positive energies from all. It was very communal, which was enjoyable. It's amazing how many people came up to us after to offer us - total strangers - support. One lady even offered us a place to stay if we ever need it. Being in a situation like this really makes you realize how many wonderful people there are in this world, even in Hollywood ;)


  1. Keep going Naya the Papaya! ( I love that!) Can't say enough how much we love and are thinking about all of you! You have a remarkable little girl on your hands! And she gets her strength from her mommy and daddy! Just keep up with the church and the prayers.

  2. PS I don't know how many times Nana is praying the Rosary! I think her finger tips are ready to fall off! :)

  3. Speaking of rosaries - Jamie, my mom and dad say the rosary every night and Naya has been part of their offerings since the beginning. I know there are a lot of prayer warriors out there that have her on their minds as well. I wish there was more I could do for you all but my prayers are with you everyday. Your journey has been a long one and I pray for the journey that brings her home with mom n dad, safe and sound! - Al

  4. I'll see you tomorrow! Love you so much. Ty ate so much pie tonight, I thought he was gonna barf. It was pretty awesome. :)