Day +43

IMG_0024Caption1: Don and the boys with a Katelynn eating a picnic Chick-Fil-A lunch on our yard.

Caption 2: Don napping in the back of Josh’s room and Noah spending time with Papa.

Josh has been moving very much today while in the ICU.  It was alarming to me to come this morning at 6AM and find that Josh had yanked his feeding tube off of his nose.  All day today he has not been calm and he’s needed more sedation; he also has not been able to open his eyes or respond to us.  When Josh’s doctor came in to talk to us, they took his sedation down somewhat, but Josh still was not able to wake up and respond.  He was restless and very uncomfortable.  The doctor did not have any decisions for him to make yet so we decided to spare Josh and turn back up his sedatives.  I’m worried that this ICU experience will give Josh traumatic memories. Of course, the priority is to save his life but please pray Josh would not have trauma, but that he’d hardly remember anything. Please pray that God would protect his mind and give him peaceful dream or to none at all.  The plan for now is to try and get the tube out tomorrow if his swelling does not get worst, which the doctor doesn’t think it should. Then by Tuesday, we should find out whether or not we will have the t-cells and when we can get them.  we hope to know if we have to wait for the t-cells to start a very mild chemo that Dr. Newel got consensus from FA doctors all over the country as the next best thing! Please pray for a successful treatment of his PTLD or lymphoma.

The hardest thing for us as a family has been watching Josh suffer as he is.  Noah was brave to come to see him yesterday, but he doesn’t want to see him like this again.  He asks about when he will be out and home with us.  That is our longing… is to see Josh back home with us soon! I’ve tried playing the audio Bible in Josh’s room to help comfort him.  I’m not sure if he can hear it, but if anything, it has helped minister to us and hopefully others around here in the ICU.  Josh’s dad Don has been sharing with the staff the many ways God has answered our prayers throughout this trial.  It’s a good reminder to me too! Thank you, Don, for being here for Josh, the kids, to help Katelynn and to be there with me!  Don took Noah to stay with him at his hotel and they got to go to the spa, the heated pool and have breakfast there. Nathan has also enjoyed time with Papa while they miss dad being home.  God is teaching us that we must set our eyes on God’s love, sovereignty and all that he has done in the past. Also, all that he’s doing now even though the dark days, we see glorious blessings.  I’m so thankful for all the help Katelynn is to us at home so I can be at the bedside with Josh. It’s easy to be anxious about the many things that are given to Josh at the hospital, but ultimately we need to do our best to be informed and then, trust God with the rest.  Please pray Josh and the family would rest in Christ, who gives us the privilege to be children of God.  It’s easy to think God has forgotten us, yet he cares about our fears, tears, and suffering.