Ezra's New Room

Ezra was successfully transferred last night!  He did become fairly acidotic on the transfer so they immediately had to put him back on the oscillator ventilator on fairly high settings but have since been able to be wean down a good amount this morning. They have not needed to start the nitric oxide as of yet.  Heart rate has been good with no EKG lead changes (heart irregularities) yet this morning.  Potassium continues to be high but is thankfully trending down after starting insulin which pulls the potassium into the cells and dextrose (basically sugar fluid) to offset the insulin medication. His calcium continues to be low so they are replacing it as needed.  Blood pressure has been stable and he continues to be off the blood pressure continuous medication and is no longer on steroids to help it either. He continues to be on the milrinone drip just to help with the pulmonary hypertension.  Milrinone helps increase contractility of the heart and vasodilate the arteries so there isn't so much resistance to push the blood through the arteries. Unfortunately there has not been any more fluid coming out of the nephrostomy tube (the drain the interventional radiologist put in the right kidney yesterday) which means that we may not have any kidney function left but we are still praying that this will change once they give him a little more fluid since he has been so restricted up until this point.  The general surgery doctors were there to see Ezra when Nicole called this morning so we're unsure of the time that they will be putting in the peritoneal dialysis catheter.  They are still unsure if the peritoneal dialysis will work due to how "special" his tummy is as the nephrologist (kidney doctor) said.  She also said jokingly that he needs a tummy tuck :).  In all seriousness it's one of the worst prune belly's they've seen so we are praying it works.  If not they will do hemodialysis which is a lot harder on Ezra and for the future plus has a greater risk for infection.  When they put the peritoneal dialysis catheter in they will also put in a gastric tube, called a g-tube for short, which goes straight into the gastric region of the stomach.  It is very hard to get kids with kidney disease to grow so this will be an important part as well so he is getting good nutrition.  Besides all of these things a huge prayer request is that Ezra does not get an infection, especially pneumonia.  This would be detrimental to him in the state that he is in.

Nicole still has a spinal headache but it is slowly improving so we are able to get discharged this morning so she can go over and see Ezra a little today as she can tolerate. All of the people Jeff works with have been so fantastic and supportive during this time which has allowed Jeff to be able to be there for Ezra when Nicole can't be.  We feel so grateful that we were able to come here for his fellowship for many reasons but they are a big part of that.

Thank you again for all the prayers.  Despite the circumstances we continue to have an underlying peace that is only given by the grace of God and praise him for each hour given to us to celebrate Ezra's life here on Earth.  Dr. Moore reminded us again today that no matter how long that he is here with us Ezra is a huge blessing to our family and we completely agree.

With love,
Jeff & Nicole