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Saturday, November 24, 2012

Fri & Sat
Nov 23rd & 24th
Lets Hope and Pray

Although Saturday isn't over yet...I thought I would catch everyone up on the latest news. 

Noa has been stable the last few days and has moved forward in some areas. Its encouraging that there hasn't been any major issues with her progress, but that can be deceiving because what we have been dealing with are other medical issues that have been unavoidable due to the fact that intervention (medical care) is needed. It (medical care) has been amazing and helpful, but can be complicated, and in itself cause complications. An example would be the dialysis catheter clogging and sending Noa into a critical place on Wednesday. 

One goal that Noa's doctors have had is removing extra fluid Noa has had in her system. And its been accomplished. Her body and extremities are closer to normal size, but one compication is that her head is still holding fluid. They aren't sure if its just due to 'slow drainage' because the ECMO cannula were in place on that side or if its the catheters that are still in place in her chest, or if she has a clot in her arteries that is slowing it down. They are hoping to remove the catheter on Monday and do an ECHO to see what we might be dealing with.

Our biggest concern right now is her kidneys. We have all been hopeful that dialysis was a means to an end and she would eventually urinate on her own (which she's done fine when the circumstances are right). But she hasn't urinated in a while and its a problem as we move closer to considering surgery for her CDH. 

Its incredibly complicated to treat a baby her size with chronic kidney issues post surgery. If it were only kidney issues, treatment and transplant (eventually) would be not as complicated, but because of the complexity of Noa's situation (her heart/lung issues, vulnerability due to CDH surgery and healing needed, etc) it becomes more serious (if even feasible). They are exploring the options-but they are slim.

BUT, THERE IS STILL HOPE!!!!

Over the next couple of days they are focusing on getting Noa's kidneys to work. They are working on creating the optimal scenario for her (getting her fluids to the right level, her blood pressure to the right place and giving her strong diuretics to wake her kidneys up). Last week, the X-ray of her kidneys showed blood circulating and they looked viable. So, there is no reason to think she can't do it. We are really hoping and praying we get over this bump. It is very serious and imperative that we do get over it.

One additional concern is 'access' to Noa's veins. On Monday, the surgeons plan to make a little incision in her left leg and thread a vein since there hasn't been success thru just poking. This will enable them to move her meds to that new vein and remove that catheter from her chest.

Some good news is that they have lowered her Nitric Oxide and plan on removing her from it. It's always a good sign that Noa can do well as they slowly peel away the machines and meds that assist her. Her oxygen saturation rates have looked great, and so have her gases and lung improvement. The xray of Noa's lungs looks like she has a large amount of left lung in addition to the right one. These are all amazing steps in the right direction towards surgery, but we need for her kidney's to be healthy.

Thank you for being faithful and enduring with us. It can be tiring, but little Noa doesn't appear to be giving up her fight. She has more in her. I still dream about the day we get to hold her and see her smile. I pray that God has that on this side of heaven. xo


    
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