Update 5-9-12

First, I want to share one the sweetest pictures of little Brian. He has so much going on in his little life, but he is the sweetest, happiest boy. This picture shows him extra happy as he got a card from our friend from church, Jacob. (Thank you McGaw's for picking out a card that sings. We've listened to it play the little ditty no less than 207 times. Seriously though, thank you, Brian loves it!) :-) Brian adores Jacob. Jacob is 19 and Brian will get silly and act shy around Jacob. He gets really excited when Jacob talks to him.

Brian with his "Jacob Card"

Now the tough stuff. When we were discharged on Monday a home heath nurse came out and showed us how to use the rental medical equipment. Every eight hours around the clock we give Brian an infusion of Vancomycin. We use the S.A.S.H. method.   ;-) Just call Fred and I oncology nurses, b/c we now flush Brian's port, hook him up to the pump for an infusion, then flush his port again before we Hep lock him. (For all you non medical people, that means we give him Heparin in his port so it doesn't clot.) I am being totally silly. We am not a medical professionals at all. But we are learning all the jargon and picking up a few things here and there.  We are just parents and while we feel totally confident in our ability to do what needs to be done, it is still extremely stressful. The first night I had horrific nightmares about messing up and killing Brian. It was AWFUL!!!!  I had to repeatedly come to the Lord in prayer throughout the entire first night. Anyway, we will do this until Sunday morning. Then Tuesday we will follow up with Hem/Onc to get more blood cultures taken to make sure the infection is out of the port.

Here's Brian during his first infusion at home. The home health nurse helped us get him started then was out the door. She did call a couple hours later to check on us and again the next morning. She wasn't too worried about us, as the "screening" questions were 1. Do you have difficulty reading or writing and 2. Are you able to follow instructions? Once she met us, and both Fred and I were ready to be trained so we could both be involved in taking care of Brian's infusions, she knew we were on top of what was going on.

Here is Brian's second night at home. He gets one infusion during the middle of the night. Fred had to work last night so I didn't sleep well after I got Brian hooked up b/c I was afraid I would miss the beep of the pump. So, I sat with him for a while, just looking at him and praying for him. I also took a picture. I was pretty proud of myself for thinking to use a 3M command hook to rig a cool pump pole on Brian and William's bunk beds. (Well, and using the lamp hook. pictured above.)

Tonight Fred is going to let me sleep through the night and he is going to take the 2 AM infusion. I doubt I will be able to sleep, but maybe I will. I have spent the last week sharing a hospital bed with Brian and being interrupted every couple of hours for Brian's vitals or infusions. It's amazing how God's mercies are new every morning and His grace is sufficient. As we were going through the last week (well, really, the last two and a half years) we go about our day, just trucking along. Every so often I look back on our blog and read different entries, and I am overwhelmed. I'll stop and think, "Man, I can't believe we have been through that."
   I was talking to a friend about my nightmares and she told me she was praying Philippians 4:6-7 for me. Later in the day I was reading the verses and reread some notes I had written in my Bible. I am sure I heard a sermon one time and noted what the pastor was saying. In my Bible I had verse 5 underlined. The Lord is near. Then I had written in the margin, "the command 'do not be anxious...' comes after the Lord is near. We are able to rest and be thankful because HE is with us. HE is present and HE gives us what we need when we need it."

So very true.

1 Thessalonians 5:24- The one who calls you is faithful and he will do it.

He has called us to walk this path and HE is sustaining us and doing it. We are not amazing people, it is Christ's work in us. We live amazed.