Days up on the 9th floor are rather uneventful. Jesse got half of his staples taken out yesterday, and the other half will come out Sunday. He is continuing on his Octreotide medication until tomorrow at which time they will stop it and hope the chest drainage doesn't resume. If there it no drainage, they will be able to remove the chest tube hopefully Monday. If the drainage resumes once they discontinue the medication we will have to look at more long term solutions, so pray that the drainage stops.
They continue to wean Jesse off the oxygen. He is down to 1 1/2 liters at 35% oxygen.
Chad came Thursday evening and spent the night. He and I had a nice afternoon having lunch together and doing a little shopping. Grandma Mari is planning to bring the boys for a visit tomorrow. It will be so nice to see them again, and it will be Sam's first time to see Jesse since the surgery!
Not much happens (except if I ever leave the room). We just eat, sleep and try to entertain Jesse. Jesse remains very content to lay in bed all day. I did get to hold him for a couple hours this morning. I have to keep an eye on him or he quickly tries to pull out his lines or oxygen, so in general his hands are tied down. It will be so nice when he isn't hooked up to everything and I can really hold and snuggle him. We have met many other people while here in the hospital that have been very encouraging and helpful to us. Please pray for Jonathan, a 3 1/2 year old who has undergone 4 heart surgeries and continues to have problems. Also pray for AnnaSophia who underwent surgery around when Jesse did. You can view her website at http://www.ourannasophia.blogspot.com/.
The lack of sleep and the waiting is tiring, but I am doing better now at trusting and waiting on God. He has the master schedule and I am glad he is in control.
I wait for the LORD, my soul waits, and in his word I hope. (Psalm 130:5)
Give thanks to the LORD, for he is good, for his steadfast love endures forever. (Psalm 136:1)
I thank my God in all my remembrance of you, always in every prayer of mine for you all making my prayer with joy, because of your partnership in the gospel from the first day until now. And I am sure of this, that he who began a good work in you will bring it to completion at the day of Jesus Christ. (Philippians 1:3-6)
God bless all of you around the country who have lifted us up in prayer.
Love,
Kristan
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My name is Lynne and I came across your site while finding out more about portagen. I have friends who have a 2 weeks old daughter with transpostion of the great vessels, tricuspid atresia, and a septal defect. She just underwent surgery at the University of Michigan at 3 days old and will need 2 more surgeries at 6 months and at 2 years. Her name is Arabella Grace and although her initial recovery period went well, she is now hitting a few snags along the way. I was inspired by your site and will add Jesse to my prayers too. Please pray for Arabella and her family. She is a fighter, but is getting tired. Thanks, and may the Lord hold you and your little one in the palm of His hand.
ReplyDeleteJesse is in our prayers. We live in Colorado and came across your site when praying for AnnaSophia. HE is holding you all in HIS arms.
ReplyDeleteBlessings on the journey,
Craig and Jodi
Hi Chad and Kristen
ReplyDeleteWe are so happy to see the progress that Jesse is making. Every little thing they can take out is a little step closer to going home. We do know how slow the time goes while in the hospital waiting to hear the words time to go home. God is so good and as you said Kristen his timing is perfect. We contine to pray for Jesse and all of your family. Enjoy your time with the boys today. May God continue to give you comfort and strength and peace. Love, Terry and Jim