Another Something

Well, it's been a few day's since I've posted an update. On Thursday, Nathan got another line put in so that they can draw blood along with administer antibiotics and such. It's is actually tunneled from the crease of his leg into his abdominal area which is where it comes out. The cardiologists did not want another line put in his arms so that they can preserve his veins and arteries for his cardiac surgery. We are so happy that he has this new line because he was understandably not tolerating getting stuck every time they needed blood. And they needed blood a lot. They needed to check it every 4 hours until his blood thinner was in the proper range. Incidentally, he needs more than double the amount of blood thinner a person of his size would need to get into the right range. I think that threw the hematologist for a loop.

While Nathan did have a couple of IV's in, the one they could use to draw blood eventually stopped giving blood so that is why he needed to be stuck so much. After a while, he started passing out when they drew blood. The neurologist thinks it might have been due to trauma but I've heard this can happen so hopefully, he's not too scarred.

They've also put Nathan back on the antibiotic that he is allergic to. It creates a rash but it's the best one for his brain infection. Right now they think they can deal with the rash because the infection is more important. Nathan has had some rough nights with itching and not being able to sleep well. He is now on many creams and antihistamines to combat the rash. They have helped but he's not without discomfort. Poor boy.

Until yesterday we felt like we were in "waiting mode" for his brain surgery (or at least the MRI which we are of course praying will shrink and he won't NEED brain surgery) while the blood thinner was working to prevent new clots. Well, two episodes took place that indicated that he might be having some additional issues. Yesterday around 5:00PM and also around 9:00PM this evening, Nathan had a very agitated episode where it appeared he was having a tantrum and then his oxygen level plummeted. This behavior change seemingly came out of nowhere. Yesterday he went down into single digits and turned gray! Today he went down very close to single digits. For those of you who aren't aware what that means, it's the level of oxygen our body gets. For those of us with a healthy heart, our levels would run in the high 90's. Nathan's baseline is in the 70's. Yeah, single digits is scary stuff! Both times they increased his oxygen and put an additional mask on him until the level came up. He had a chest x-ray after this happened yesterday and they drew blood to check some gas levels. The blood came back perfect and I haven't heard about the x-ray. If there was an issue, we would have heard about it. They believe this is a cardiac issue.

Today they wanted to do an MRI to make sure there were no additional strokes based on yesterday's episode. Nathan had to fast until 4:00PM and then they came in and told us they were going to do it tomorrow. Let's just say I was a little more than annoyed that they made a 3 year-old wait to eat only to postpone it until tomorrow. Then, right after we fed him, they called and changed their mind. Nice. So now he has to fast tomorrow. I guess this whole thing stemmed from what happened when he got his new line. Everything went smoothly until they were taking him out of the sedation and his oxygen levels went down (into the 40's). I think they wanted more people around just in case something happened and they needed them. I don't get much of it because I think you can decide before 4:00 what you need and if you can get it. That's just me. I am of course pretty far removed from that type of decision making.

So, that's where we're at right now. Richard and I are confused about why Nathan is having these oxygen issues. We think they might be taking too much blood again but once we posed that question to the doctor's on the floor, we were reassured that wasn't the case. I asked our nurse his hemoglobin level and it is lower than what our ID doctor wants so I will be asking the ID doc about it tomorrow morning. Our specialists are good but sometimes the doctors on the floor aren't AS familiar with every detail of Nathan's case (which would be difficult because there are several patients they have to know about).

Thanks so much for your prayers. I hope we get GREAT news about Nathan's MRI tomorrow. I will let you know what we find out.

Take care.