Day 16 - Lungs

1/15/21 - Friday

Morning:  Convo with Doctor - Off the gentamicin antibiotics. Tomorrow morning getting a chest and abdominal X-ray and a metabolic panel to check electrolytes and such. CBC and Blood gas will be done today to check all levels of blood and CO2 to see if James might need another blood transfusion.  Still at 3 ML of feed and is tolerating it, which is good. Will move up to 4 ML tonight to see how that works for the next 3 feeds during a 9 hours window. Which will lower the TPN rate. By 3am, we should know.  Getting Glycerin tablet to help with with bowel movement, since he hasn’t had one in the past 18 hours or so. Saliva swab came back fine. The culture is showing no growth in urine, saliva, and the second blood culture. 

X-ray shows that the lungs are experiencing chronic changes, which is considered a lung disease at this point. We’d like to see a decrease in the oxygen and ventilation. If this persists, there is a possibility for using a steroid as an anti-inflammatory, which is fairly common in small dosages - decadrone is the steroid. This can help open the air way.  There’s no holes or tears in the lungs, which is good. Apparently the terms disease and development are used interchangeably, so I need to get accustomed to this. 

Endotracheal tube is at 6 in depth. It was moved a little bit, so they had to re-align, which is needed, but James doesn’t like to be touched - so there’s that. 

Our Case Manager/Liaison between the doctors and the parents. Gave us the paperwork for assigning more consistent nurses per our request. It wouldn’t be exclusive nurses, but on the shifts that they work, they would be assigned to James.  

Evening:  Holding feeds due to needing the blood transfusion because his hematocrit (a measurement of the size and number of red blood cells that someone has) was low (dropped to 31). Added sensors to his head and belly for extra monitoring. Increased the TPN. Will continue the antibiotics. Will need a spinal tap tonight to collect fluid and see the protein, cell count, etc. Very low risk, just need to get James in the proper position. This will tell us if there’s a spinal infection along with a blood infection. Will show us how long to treat him with the current antibiotic, or if that’s needed and for how long. 

C-reactive protein (made by the liver) is an inflammatory marker from the blood that’s being tested tonight too. If there’s an infection in the central nervous system, we will need to treat it for an extended period of time too. 

Needless to say, James needs to fight the fight (as do Lindsay and I). This is the up and down ride that we’ve been told about. 😒