Friday, December 21, 2012

Starting to feel pretty bad

While today brought dissapointment, there were some very fun things. We will write more about the Snow Pile and the Holiday Boutique at Brent's Place tomorrow. Lydia wore a mask and the kids were able to participate in the festivities.

Esther opened a birthday gift from Aunt Melody today. A fun flower set where she can stack and build flowers. She played with it several times today, a very fun toy!
Esther had an okay day today. I'm sure compared to the worst of it, this isn't so bad.

For tonight, some specific things to pray over Esther's body.

  • For her skin. It is breaking down and the slightest tug is leaving her skin raw. There is a particular patch of skin near her armpit on the right side that is very bad. We put a dressing on it tonight that will help protect it from her clothes, but if it gets worse the nurses can call a wound nurse from the burn unit to help soothe her skin.
  • For her pain. Tonight her resting heart rate was in the 160s. She doesn't complain of pain, but withdraws and goes quiet. After we gave her a dose of narcotics, her heart rate responded.
  • For her mucositis. This is the term for the sores in her GI tract. When it becomes irritated her body tries to protect itself by producing a thick mucous. She started using a suction tube to help clear it out of her mouth because it just doesn't end. No amount of spitting can get it out. She is handling it well and likes the suction tube. It is similar to the one at the dentist. Our dentist calls it "Mr. Thirsty" and she thinks it's fun to call this one the same name.
  • For transfusions. She had a platelet transfusion on Thursday and will have another this morning. Her red blood cells are hanging in, but her platelets are not staying up. This is particularly important because there is bleeding accompanying her mucositis and because of her history of nose bleeds. Please pray for donors. I know at this time of year everyone is very busy, but if you have time and wouldn't mind a trip to the Children's Hospital, would you please consider donating platelets? It takes a couple of hours. I've written this before, but platelets are harder to come by. They only last a few days, so it is not possible to build a stock. Esther will have many, many platelet and blood transfusions. Pray for safe transfusions.
  • There is a national lipid shortage. Lipids are a fat that can be given through an IV. The hospital has canceled all lipid orders for patients except those who are critically underweight or babies in the NICU. This wouldn't be too big of a problem except Esther can not eat dairy right now and most of the things on the menu that have fat also have dairy. Another problem is that she just isn't eating. Today she ate one bite of oatmeal, one tiny bite of a banana, one bite of applesauce, and 1/4 of a popsicle. This is to be expected, but some creative ideas on getting some fat into her body would be great. She is still getting other IV nutrition, so her body is being nourished, she's just missing some of the important fats.
  • For her kidneys to be functioning properly. Her electrolytes have been a bit off the last several days. This could be from poor nutrition and not eating anything or from struggling kidneys.
  • For health in our family and wisdom in contact with each other.


  1. Hi-
    I follow your blog through a friend of a friend and it is so encouraging to me as my mom goes thru cancer treatment right now and was just moved to a nursing home at age 61. I just wanted to let you know what I have heard about the stomach bug that seems to be going around Ft Collins. My two kids both had it and I was very surprised that they were sick about 5 days apart. This is what I am hearing from a lot of friends and moms. Neither my husband nor I have gotten it, and we are 3 days out from my 2nd child having it. So, it does really seem like a slow moving bug, and at least for us, was pretty fast moving, around 24 hours. Just wanted to tell you what I had heard around- don't know if this helps or makes it worse :(. Hang in there and thinking of all of you often.

  2. Does she like peanut butter or avocado? Those are healthy fats that don't have dairy in them. You could mix peanut butter into her oatmeal or put some on a soft roll. You could mix up the avocado (with a little salt or just plain) and either just give her a spoonful or put it on a chip. I have no idea if she'll like these, but they were the ideas that came to mind.

  3. What about taking an Omega Fatty Acid a fish oil pill? If you get the good type, you don't burp up the nasty fish smell. Just a thought. I am not sure if they are recommended for little ones.

  4. Praying, praying, praying. Sending lots of hugs too.

  5. How about non dairy protein shakes?? I know, a little harder to do, but vanilla soy milk is good with frozen fruit and vanilla protein powder. Praying for you all.