Pumping the Brakes

Last night was kind of awful. Jack's oxygen saturation was low and his blood pressure was high. So they decided to put him on oxygen.. Which won't over like a giant lead balloon. After begging, pleading, bribing and pretty much flat out lying, we talked him into keeping it on while he slept.... And then it was time for a midnight chest xray.

This little boy never wants to be carried anywhere. Even when he's blue and put of his second to last breath, he insists on walking on his own.. Unless it's anywhere in BCH. The wonderful CA George wheeled the o2 tank down for us and was a great GPS, always remembering to let me know right or left. During the chest xray, tears just streamed down his face while I had to hold his tired little arms above his head. His little eyes locked mine and he just kept repeating "i don't like this" through his giant tears . And my heart shattered into about 300 pieces on the floor. After 2 quick pictures, we headed back upstairs.. To more bad news. His sats were staying low so they decided to do a blood transfusion. Which meant waking up every hour on the hour to check vitals. There's something really weird about trying to sleep in  a hospital bed next to your son while someone else's blood is being pumped into his  exhausted little body.

He woke up happy and ready for some chocolate milk. We got the ok to order breakfast and Dr. Quinonez came by. They discussed Jack's case  at conference this morning and it was decided that his anatomy and Fontan were too complex  and that he'd need an MRI before he gets the official green light for surgery.

So surgery would have to be rescheduled. And I cried. And he explained why. Then I asked him to explain it one more timtimde. Then I asked him to write down the readers digest version for me so  i could relay the information as accurately as possible to Jeremy. He was  beyond patient,  kind and generous with his time. He took my email and no sooner did he step out the door, he had emailed me all the details.

So now we just sit and wait to be discharged. Dr. Quinonez told me to call Jack's cardiologist if I didn't hear from them about an MRI.

I  cry every time I think about not coming back here tomorrow and putting this surgery in the rearview mirror. Having to get out of surgery mode only to have to get back into it again is emotionally daunting. And as sucky as this all is, I know that Dr. Quinonez only wants to do the best for  Jack.  He wants to perform  this  surgery as safely and effectively as possible. So at the end of the day, whatever his surgeon says, we will support it 100%.