Jared's Story: April 5, 2002 (Friday)

Day 41

Today began around 7:45. My mom called to check on Jared. She and my stepdad, Wayne, are going to come up on Sunday.

Last night before we left, Jared started breathing rapidly and his H20 stat began falling. The respiratory person came in and adjusted his machine and Cindy, his nurse, gave him morphine. He motioned that he was in pain on his side so I think he must have gotten a little anxious. We stayed a few minutes past 10:30 waiting for his H20 state to improve.

Something to remember about Jared's face: Jared's face has been covered with blood from his mouth to his chin since the first days in PICU. The nurses did not want to remove it and make it bleed more. When we came in yesterday evening after our long wait, Jared's face was clean and no longer bleeding. He still looks good this morning. Kay cleaned his lips this morning. He looks great with no active bleeding.

William left the stem cell room around 8:10. I got up and started getting ready. I went downstairs and sat with Louise and then went in the back. William and Earl were with Jared. They left and were going to send Louise back. It was a few minutes before she came back. When she did, she said that William's boss was out in the waiting area with his wife. She left and William brought his boss, Billy, back to see Jared. He asked Kay if his wife could come back too and she said yes. She came back and we talked for a few minutes and then they left. While they were here, they gave us an envelope with money that employees in William's store had raised for our family. What a gift and a blessing.

We are now waiting for the daily rounds report. The doctors are standing outside the door and about to come in. Jared is resting from the morphine. His dialysis machine is running smoothly. The only difference today is that his blood pressure is giving him problems. We will see what they say.

Dr. Winkler came in and said that Jared was about the same. One of his lungs (his right one) is compressed so they are going to put a pulmonizer on his chest to help it feel better and to hopefully open it back up. She also mentioned researching for a new drug to give Jared.

We sat with Jared a little longer and then left to go eat lunch while they suctioned Jared and did other tests. While we were gone, we talked with Rhonda, Wendy, Patrick's mom and then Wanda. We ate the manicotti that Debbie sent for lunch and then went back to Jared's room around 1:00.

Dr. Winkler came in again and changed Jared's chest dressing. She talked with us for a few minutes. She is trying to get a drug from Italy that could help Jared. There are a lot of road blocks that could stop us from getting this drug.

*I pray, Lord, that you'll make a way if Jared is to get this drug. I pray, Lord, that you'll touch Jared. I pray for healing from the top of his head to the bottom of his feet. In Jesus name. Have your way, Lord.

The respiratory lady came by and we talked with her for a few minutes. Soon it was time to leave again. William and I went upstairs and relaxed. We talked with a few people and just had some quiet time. It is now 4:25 and I'm back in Jared's room. William went downstairs for a few minutes.

*Lord, I praise your name. I thank you for what you are doing in Jared even this minute. I pray, Lord, that his lung will open and his breathing will improve. I pray that you'll touch him and have your way. In Jesus name. Amen.

It is now 10:30. We had another busy afternoon. Dr. Winkler came by to tell us about her afternoon of research on the drug to help Jared. She told us there is a certain criteria that must be met in order to get the drug. 1) Your lungs need to be in good shape. (Jared's lungs are not very healthy at the moment.) 2) Blood pressure has to be stable. (Jared's blood pressure is not stable.) 3) Must not have any excessive bleeding. (Jared's bleeding is better.) 4) You have to take this medicine before day 35 after transplant. (Jared is at day 24.) Right now Jared meets two of the four items. Dr. Winkler said we needed to pray for Jared to get healthier. She also said that we would have to got to Duke University to receive the medicine. (We will cross that bridge when we get to it.) William and I digested the info while we sat with Jared. At 6:30, we left and went to the Hope Lodge to get a room and then went to eat at Shoney's. We are both weary but hopeful. William said that he's been asking God not to take Jared. We pray for your will, Lord.

We went back to the hospital and sat with Jared. We are about to go to sleep. Pastor Lynn called and said that the kids were praying for Jared. Adam called and so did Rhonda.

*Lord, we pray for your will. Have you way in Jared. In Jesus name. I love you, Jesus!
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Jared enjoyed seeing and spending time with all of his cousins.