Hospital Update

It's been a long stressful week and I've been without computer access, hence the lack of updates. Noah was admitted on Monday, requiring oxygen, fluids and antibiotics. Unfortunately, an error was made in the ER, and instead of recieving a 150cc fluid bolus, he got 500 over an hour. This is a huge amount of fluid for someone his size. He began having even more difficult breathing once we got on the ward, which we thought was likely from the fluid overload. So the resident decided to restrict Noah's fluids overnight. By Tuesday morning, Noah was once again getting dry, but it took all day for the service to sort things out and get some fluids running. All these things, plus the fevers and high respiratory rate have put Noah in quite a spiral with his fluid balance. His potassium dropped to a frightening 1.8, and we are still having trouble getting his electrolytes sorted out. He has recieved multiple potassium boluses and yet his potassium is still not up to a normal value. No one has figured out where he is losing all this potassium. But, as we know so well from the past, Noah tends to have wierd and wacky blood work results when he is septic.

And yes, septic he is once again. His cultures came back growing a staph bug (MSSA). Staph is a nasty bug that likes to seed in bones and in the heart. So Noah had a bone scan done today. It showed some hot spots on his knees, hips and his left big toe of all places. We are unsure if these are infections or signs of chronic anemia. He will also have an ECHO tomorrow to check the status of his heart. I was planning to write that he has been fever free for the past couple of days, however, this evening Noah spiked a fever once again and so once again, we are waiting on new blood cultures. He is still very lethargic and just plain miserable. We did get a couple of smiles today with Cecelia from music therapy showed up with her guitar!

It's been a particularly difficult and stressful hospital stay. I've been having to fight so hard just to be heard and it is both frustrating and exhausting. Memories of what we went through during our last stay make being here so much worse, and there are many here that I don't trust and likely never will. But Noah..our strong, brave little fighter...his health is still most important here, and so I will continue to do whatever I have to do to advocate for him and protect him the best I can.