Day 3

2/28 (Thursday morning) Justin was stretching out his legs and you could see his skin rolls on his legs, which was cute. He was moving a little too throughout the day. He also got a cool tanning light to help him with his color.

Ventilator setting went down (12.2) – which is good. Got his pic line in, oxygen in the low 40’s – which is good. Went down on the Nitric Oxide. Justin is stable and showing small signs of improvements. We were able to meet with a neonatologist, pediatric surgeon and cardiologist today.

Met with Dr Patel (neonatologist) and found out that Justin is on 3 blood pressure meds, hydrocortizole and dopamine. He has 1 + 1/3 functioning lungs. They are not only underdeveloped (due to hernia) but also premature (born at 31 wks + 5 days). Dr Patel walked us through all the xrays Justin had from 2/26-2/27:

x-ray on 2/26 (Tuesday, 1st xray) – not able to see any lung tissue on left side

x-ray on 2/26 (11am) – some lung tissue on left side , lots of air/lung present on right side, heart shifted off to right.

x-ray on 2/27 (Wednesday am) – darker view of lung on right side (more present, inflating more) and 1/3 lung on left side. * this is the xray that was said to be “amazingly good” by the surgeon. However, the diaphragm has flattened in this view due to the pressure on the lungs. It’s something they are going to keep an eye on in future xrays.

x-ray on 2/27  (9pm) – intestines appear to have gas on left side, they will keep an eye on making sure as little gas/air travels down to the intestines as possible. The right side lung is still dark/functions, still 1/3 lung present on left side.

Dr Patel would prefer to have surgery at U of M once he is stable enough to be moved. We would have the back up of ECMO at U of M in case he needed that after surgery.

Met with Dr Cullin (Ped Sur.), who has long history of working with children with CDH, nearly 30 years. In the 1980’s working at Children’s hospital starting their ECMO program. In the late 1990’s, worked at Hutzel hospital in their fetal surgery department. He has connections with other surgeon’s at U of M and has started contact with them about transfer options and when it is appropriate for Justin. His advice to us was to look the broad trends for Justin. (I.E. look at an 8 or 12 hr. periods of time). How did he do overall? We may have a bad hour or 2, but can we say that today is better than yesterday and yesterday was better than the day before? In Justin’s case, we can.

We witnessed Dr. Anne performing an echocardiogram on Justin today and were able to go over the results. The pressure is high in the chamber pumping to the lungs. There is a small hole between his upper chambers, called ASD. But this wouldn’t be a problem until later in life and may be able to be corrected by then. The direction of his blood flow has changed and is going in the right direction, which is good. There is a blood vessel open (called PDA), which he will be keeping as eye on. The pressure on the right lower chamber is of concern and we are hoping it will come down. The aorta is also stretching and therefore narrow, which he will also be keeping an eye on. He will be repeating the echo tomorrow afternoon.

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