Monday, September 28, 2009

Follow-up from the weekend

Riley is back to her old routine again...she takes a few steps forward, then another step back. This morning when Pam visited Riley, we got a little bad news. The bloody stool had come back, so Dr. Hsiao decided to cut the feedings off altogether. To make sure she still gets her nutrients, she is getting TPN feedings, which looks just like Mountain Dew or Gatorade through an IV, in addition to lipids (fat) in her IV as well. They are doing KUB's (GI x-ray) every 6 hours to check for problems, and have found her large intestine to be slightly dilated, which is causing the bleeding. It has been very loose and liquid, so it's been hard for them to get a sample to study, but the sample they did get came back negative for any bacteria, and confirmed the redness was indeed blood. In addition, her blood cultures have come back negative as well. They are thinking she could have some sort of virus, but haven't been able to confirm anything yet.

Since her feedings have been stopped, they went ahead and removed the feeding tube - it was only a matter of time before she pulled it out again anyways. When she slept today, she was pretty calm and even had the cannulas out for a short time - which meant for the first time ever she had NOTHING on her face! Unfortunately, she was lying on her stomach and Pam couldn't get a good picture of it. Getting her to stay calm and asleep has been the challenge today, however, since she has been constantly hungry and fussy. Pam spent just about the entire day up there so she could soothe her and hold her to keep her from fidgeting and pulling the IV out and crying all day.

Hopefully she will rebound quickly from this like she has everything else, but its put off any plans to get the feedings going and get her home. Doesn't look like she'll be home by the end of the month, and we'll be celebrating her 4 month birthday in the hospital. Keep her in your prayers, they've been working but we can always use more.


  1. Joe,

    Thinking about you and your family.Hang in there. My thoughts are with you guys.

    Bill Rice

  2. I can only imagine how hard these setbacks are, especially when you're so close to coming home. Every time you turn around, it's one more thing. You will be prepared for life with kids though... maybe it won't be this extreme later in life, but it does seem that every time we turned around while the kids were little, there was another illness or something to worry about. Or maybe she's getting it all out of the way now and once she gets a little older, she'll be the one child you won't have to worry about at all. :) Hang in there and know that she's a strong little girl and will get through all this in her own time. She's teaching us all to be patient!
    Love to you all!
    Auntie Nikki

  3. I know this has to be so hard on both you and Pam... I can't even imagine. I love all of you and I hope little Miss Riley can get her act together and come home! I hope Nikki is right, and maybe this is her way of getting all her illnesses/problems out of the way while she is in safe hands at Wesley... so that when she comes home with you, she will be a healthy, happy little angel. Stay strong, and Joey - try to gain a little of Pam's amazing patience. :) We are all praying for her, and I can't wait to come home and see her again.
    Love you all!

  4. Joey & Pam,
    I have been following your blog and appreciate the time you put into it with pictures and updates. Riley is very strong and has come through so much. I will continue to pray for her to come through this 'set back' and be home soon. I will also pray for God to continue to bless you and Pam with strength, courage and endurance. Remember- 'If GOD brings you to it, God will bring you through it."
    Take Care - Jeanne Ozburn-OKC, OK