**** Important prayer request ****
Elena's repeat liver enzyme test from Wednesday remained elevated. The test will be repeated when she is admitted on Monday. PLEASE PRAY that Elena's liver enzymes will go DOWN! They are close to four times higher than normal. IF they become higher than four times, Elena WILL NOT be able to participate in the transplant study! We have come too far to not be able to proceed as planned! PLEASE PRAY!
We are enjoying every moment of these days leading up to Elena's transplant! Media Day was fun, but time consuming : ) We are also 90% packed for the hospital. Today will be spent outside enjoying the sunshine and fresh air.
Thank you for encouraging us, praying for us, and loving us!!
Here's a little more information about what will happen once Elena is admitted.
The preparatory regimen will completely wipe out Elena's immune system. It is designed to. With an immune system that is so compromised, the BMT team takes every extra precaution to keep the kids from being exposed to things, as even a cold could become serious to them. For these reasons, when Elena and the other kids enter the unit, they don’t leave it AT ALL until they are discharged. There will be no getting out of the room to check out new things at the gift shop or to walk through the beautiful garden. During all our other hospital stays, we have always enjoyed being able to get out of the room, so this will be hard. Elena will be able to look out of a window, but she will not step foot outside in fresh air and sunshine for 4-6 weeks. Please pray that she will not feel trapped and that she won’t miss being outside too much.
Another precaution the BMT team takes in keeping the kids well is by requiring them to do daily jobs. Each job seems simple, but when a child is experiencing the side effects from chemo and radiation, the jobs become more like chores.
Elena's daily jobs will include:
*daily baths with special wipes - to keep germs off her skin and lotions to soothe red, dry, irritated skin
*mouth care (brushing and rinses) at least 4 times a day- to help prevent infection by cutting down on the germs that could enter the bloodstream and to help with mouth sores
*using an incentive spirometer multiple times each day - this is exercise for Elena's lungs to help prevent pneumonia
*walking a minimum of 10 laps on the hall everyday - exercise for the body to help strengthen the lungs, bones, muscles, and heart and also to help improve the movement of fluids in the body
Elena will have to wear a mask when she leaves her room to walk laps on the hall and when she leaves the floor for any tests of radiation.
Each day we will also be measuring Elena's fluid input and output, her weight every 12 hours, and her calories. As mouth sores and mucositis develop and appetite decreases, knowing these things will be critical in order to monitor how Elena's body is handling everything.
Thank you for praying in advance for Elena to be able to preform her daily jobs each day, for the jobs to be effective in preventing any major complications, and that Elena will have all the mental, physical, and spiritual strength she needs every moment, every day.
"For this reason I kneel before the Father, from whom every family in heaven and on earth derives its name. I pray that out of His glorious riches He may strengthen (Elena) with power through His Spirit in (her) inner being, so that Christ may dwell in (her) heart through faith. And I pray that (Elena), being rooted and established in love, may have power, together with all the Lord’s holy people, to grasp how wide and long and high and deep is the love of Christ, and to know this love that surpasses knowledge —that (she) may be filled to the measure of all the fullness of God. Now to Him who is able to do immeasurably more than all we ask or imagine, according to His power that is at work within us."