Daily update – Thursday January 22

Today was a better day.

Sam has had 4 unsuccessful attempts at inserting a picc line, three at CDH and one yesterday at Lurie. Today a special team was called in for another attempt. They use both ultrasound and X-ray during insertion to improve success rates. They were able to successfully get the line in!! What this means for Sam is a more stable way to administer fluids and medications, and less need to constantly move his IVs.

We spent some more time talking with neonatology and cardiology and they eased our minds regarding the potential risks of surgery. They are very confident that the surgery can be completed successfully and assured us that fatal complications are extremely rare.

They have some concerns over Sam’s size; the surgery is much easier with a full term infant than a preemie. Complications related to his size would not be fatal, but it is possible the surgery could temporarily impact his feeding (related to a vocal cord nerve near the aortic arch) or breathing (related to an impact on the diaphragm). They are hopeful the surgery would be completed with no complications though.

They said that three cardiac surgeons would work together on Sam, including the hospitals head cardiac surgeon. We are so fortunate to live near one of the best children’s hospitals in the country.

We also got to spend some time doing kangaroo care with Sam today. He loves snuggling and is so relaxed and happy to be held.

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