changes

The last few days have been filled with several small changes and new symptoms for Noah. Individually, they weren't a big deal, but collectively they started to get everyone concerned.

First off, in the last week we had 3 people tell us they could hear a heart murmur - but until then, no one had ever heard a murmur.

On multiple occasions, two different nurses had difficulty hearing his blood pressure or hearing his heart beating, even when using a stethoscope on his bare chest. (That will freak out a mama in a hurry - it's a good thing he was talking and alert when that happened!!!)

He's had multiple episodes of being sweaty and clammy . . . and this is the child that doesn't sweat to cool himself in the heat.

After not gaining any weight in a year, he's gained about 3 pounds in the last several days.

He's had some mild tachycardia (increased heart rate) and some mildly low blood pressures, both with no good explanation.

Finally, he fell asleep yesterday afternoon at 3 PM and didn't wake up until 8:30!

We called his cardiologist who asked us to have him in the office right at 8 this morning - we were VERY thankful that today was the day that he does a peds cardiology clinic right here in Greenwood.

Unless you've been reading this blog from the very start (and have an excellent memory), most of you probably don't know that Noah has a fairly small atrial septal defect - a hole in his heart. Ironically, this is probably the least of Noah's worries, which is why I almost never mention it. It's funny in a not-at-all-funny way . . . when we first found out that our baby boy had a hole in his heart, it was the scariest thing EVER. It was like a nightmare and we were so scared, but now we really almost never think about it because it's taken such a back seat to everything else and it just really isn't a big deal at all by comparison. I was actually reading a friend's post about Congenital Heart Defect Awareness this week and never even thought about the fact that Noah has a heart defect. (And when I DO think about it, I'm deeply thankful that we CAN consistently push this issue to the back burner.)

Today it looked like there was a bit more blood mixing between the chambers through the hole, but it still wasn't enough that it would require a repair - and we probably wouldn't even consider heart surgery at this point anyway.

Some of his heart function tests were low normal. Even though they were at the very low end of normal, they were still within that magic "normal" window, so we're taking a "wait and watch" approach. Until his gut shut down, Noah had been on heart medicine for years due to dilated cardiomyopathy (which stabilized years ago). We *could* put him on IV meds, but the risks aren't justified right now where his numbers are. The cardiologist does want to see him back in a few weeks to be sure that his numbers aren't falling off the charts.

Overall, it looks like most of the symptoms we've been seeing can be attributed to worsening dysautonomia (the malfunctioning of Noah's autonomic nervous system, which controls non-voluntary body functions like heart rate, temperature, etc.). This isn't insignificant and could cause serious problems, but there's nothing we can do about it . . . and it sure beats the alternative of serious cardiac issues! (Gotta love perspective!)

The weight gain isn't explained right now. He isn't terribly puffy, but it's very possible that Noah's poor nutritional status and his unhappy liver are making him do a little bit of third spacing (where water leaks out of blood vessels into the surrounding tissues). We'll be doing daily weight checks and his nurses are monitoring him very closely for congestive heart failure.

As for the epic nap, it was probably the result of improving his pain control. Noah's been in a lot of pain for well over a year now. The methadone (which has been increased to every 8 hours) is providing very, very good pain control - but only for a couple of hours with each dose. He's already shaken off the sleepy side effects, but his little body has been tired and fighting for so long that when his methadone kicked in yesterday afternoon, he was able to really rest and sleep well for the first time in a while. We know he's hurting in his sleep - rubbing his head, grinding his teeth, whimpering, etc. He was probably just exhausted and taking advantage of the fact that he was feeling good for a little while. And yes, while I'm glad he got a good rest, that explanation makes me incredibly sad.

Other than that, things are going well. We got a lot done this weekend and enjoyed our guests immensely. Noah's new CNA came out yesterday for the first time and we all fell in love with her. She was wonderful with Noah and they hit it off right away.

Noah and I have been reading lot of books about octopuses lately, and last night he VERY seriously informed me that "Squids are VEWY dangerous to scuba divers because they shoot poison ivy out of their beaks." Who knew???

The traveling Vietnam Memorial is actually here in Greenwood this week (I'd love to know who managed to make that happen!) and we're planning to take the children to see it. A Blackhawk helicopter is flying in for a couple of hours on Friday, which has the boys excited, and we're also planning to observe a military procession downtown to the wall on Saturday. My dad served bravely in Vietnam as a naval aviator on an aircraft carrier, and my uncle, who served on the same carrier, lost his life in the war. I'm thankful that we'll have this opportunity to honor our soldiers this way.

Off to start dinner - I just got a new King Arthur Bakers Catalog today and we all decided that today's cooler (YAY) weather is a perfect reason to try the caramel-nut cinnamon buns on the cover of the catalog. We don't want to wait until tomorrow, so we're having them for dinner along with scrambled eggs with cheddar cheese and chives. I love to bake and I'm looking forward to a little quiet time in the kitchen while Noah naps. :-)

Blessings,
Kate