Rollercoaster

Last night our sweet boy threw us another curveball...he developed a pneumothorax gain, this time on his right side of his lungs. They had to call the doctor in to put in a chest tube. Immediately his oxygen sats went up to 99  after haven dropped to 80. The doctor thought it might have been a blessing in disguise as a follow up X-ray showed his lung now fully inflated and no longer fluid around it. So thankful.

Early afternoon today he threw another pneumo on his right side....now 3 chest tubes...two in the right and one on the left. Again his sats went right up afterwards.  Thankful he tolerated it and it helped. So hard to see him needing more tubes and interventions.  

Last Friday we prepared to say goodbye....twice before I'd rushed in here not knowing if I'd get to see him again. Each time he has held on. Last Friday though we had the dreaded talk with the doctors preparing us for what could lie ahead. They'd nearly exhausted what they could do with technology but had a few changes they could make. Either he would respond, or he would continue to decline...and eventually go into heart and organ failure.  We were thankful for the tremendous effort expended on saving our son. I was thankful there was a glimmer of hope still...if he responded.

Yet That night I wept before The Lord. So aware of my helplessness and his vulnerability. I wanted my son back, to see him renewed and made whole again, for the prayers of so many to be answered for his physical healing. Yet I also knew Joshua was in the hands of God, who is loving, merciful, all-powerful, all-knowing and good, and that His ways are far above mine.  I went to bed (because my dear husband told me I needed to :) exhausted and spent, not knowing what the night would bring.  And he rallied! In fact he amazed the doctors I think.  His sats were pretty good even when he had the first pneumothorax....they couldn't believe he was at 91 with only one lung. 

 They also couldn't believe that his skin on his back looked good despite the fact that he has laid on it for 3 weeks, as he's not been able to be flipped like they usually do. Miracle.

Then last night we once again rode this roller coaster ride. We are weary.  The kids miss their daddy who has kept vigil here. The hardest part of having lots of kids is when one gets hospitalized and  I need to be home with the others (john can work here while he watches over his care with his medical awareness).  I've been in here a few times now overnights when he's been critical....I'm grateful that I've been able to be here but it's very hard on the kids who need me emotionally too.  

As I sit here at his bed I see 3 tubes draining stuff out of my son. Despite being on sedatives and paralytics Joshua has been moving his arms and head today...  Especially if you hold his hand or talk to him.  It does my heart good to see it even for a moment. He really needs to be CALM and still, so I've been trying to not stimulate him even though I want to hold his hand.

The pneumothoraxes are being caused by the high pressure of the oscillating ventilator (he had to switch from the regular ventilator--where he could help with the breaths--to this high pressure one that vibrates the lungs to move th oxygen around, because his oxygen sats were too low. The goal now is to wean him down in the percentage of oxygen being delivered by the vent and lower the pressures. If they don't he will keep incurring damage to his lungs.  So far he is doing okay...holding in the low 90s for his Sats on 65 percent oxygen and pressure lowered to 25.

We again do not know what the night will bring. Yet we pray to the One who knows and who loves our boy far more than we ever could. The One who sustained him in the orphanage, who rescued and set him in our family, and who has put on so many hearts around the country (and even others) to intercede for this one boy who has infinite value.  Thank you for listening and for praying!