Monday and Tuesday were long days of oscillator setting changes. Mason was having a good day on Monday. They decided to take out the replogle tube that goes from his mouth to his stomach and put in a smaller one that doesn't need to be to suction. After they did the exchange, Mason just couldn't get his oxygen saturation back up. They had to increase his oscillator settings and restart him on nitric oxide that night. They took out the new tube and replaced the replogle which helps with gastric decompression. Tuesday was a better day because we were able to maintain the current settings and decrease his oxygen needs until around 5:00 pm. This seems to be Mason's time of the day where he gets naughty. He was dropping his oxygen sats again. The nurse decided to try and put him on his stomach. He seemed to really like that and his sats came up. When came to visit at around 1:00 am this morning he was again requiring more oxygen and they increased his settings drastically and gave him a medication to help him relax because the doctor thought he was fighting the oscillator. When I came back at 6:00 am his settings were way down. The nurse said he reacted really well to the medication and they were able to wean him way down to lower than he has ever been.
The echo on Monday also showed that his PDA wasn't improving so the doctor decided that it was time to start the medication to close it up. They started it at 1:00 am on Tuesday morning. This is given every 24 hours for three doses and then an echo is done to see if it worked. He can have three courses of this medication if needed. The doctor thinks that the PDA is what is causing some of his oxygenation problems because it is causing fluid to build up in his lungs.
The doctor just came around and said the plan for today was a PICC line, IVIg, more platelets, decreasing the nitric, and the usual labs and xray. A PICC line is a peripherally inserted central catheter. It is a form of intravenous access that can be used for a prolonged period of time. They will take out the access they have in his belly button since they are only used for 7-14 days because of the risk of infection. IVIg is a blood product that is given to boost the immune system. His white blood count has been low, but all of his cultures for infection have been negative. The doctor just wants to make sure Mason is covered. They also have stopped the antifungal medication and will stop the antibiotics after seven days.
Tomorrow will be a big day for Mason. He will have an ultrasound of his head to check for a bleed (first one was normal) and possibly an echo tomorrow or Friday to look at the PDA.
As you are saying prayers for Mason today, please say some for Grandpa Jack who is in the ICU in Rapid City with a bleeding clot in his brain.
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