Wednesday, April 29, 2009
Wednesday, April 29, 2009 Posted by Amber
The good...Nathan saw the audiologist for a hearing test yesterday and passed with flying colors. In fact, they tested levels that they don't always test in kids Nathan's age, and he still responded accurately. The audiologist cheerfully announced that his hearing could not be more perfect right now! Oh, what a wonderful thing to hear! We don't have see her again for another year for his yearly hearing test.The bad...Nate's physical therapist came over yesterday and said that something has caused Nate to decrease in muscle strength in his core (chest/back area, etc). He was doing so well for quite a while and then we all of a sudden started seeing issues with his breathing again, problems with him choking more frequently, changes in the way he was walking, and him sitting in the "C" position again (curved back). This weakness just seemed to snowball into a whole mix of problems. The strange thing is that there was not any thing that seemed to trigger any of this...he hasn't been sick all month, so I don't know quite why he has gotten a bit weaker lately. Thankfully, it is not drastic at this point, and we have a whole slew of new stretches and exercises to do with him to help regain his core strength back.The ugly...after emails and phone calls with Nathan's pulmonologist about his increase in respiratory symptoms lately and his problem with wheezing nearly every time he is active, the pulmonologist fit us in for an appt today...and diagnosed Nathan with asthma. He will be on an oral steroid for 5 days to get a jump start on the inflammation and then have to take Flovent twice a day to help keep the inflammation down. He will also have albuterol as a rescue drug for break-through wheezing.Nathan also has a sleep study set up for May 27th. He has always been a fitful sleeper, and the Pulm. wants to make sure he is not suffering from hypoventilation at night or central apnea...both relatively common in mito patients. Nathan gets more tachypneic as the day wears on, and we really need to make sure he has the muscle strength at night to breathe effectively. Oh, I pray that this sleep study is normal, as I am just not ready for the potential respiratory support that can come with this disease...though I don't think anyone would ever be ready for their kid to have to have support.Our pulmonologist also brought up a very, very difficult conversation about the future with this disease in regards to respiratory progression...a conversation that we knew we would eventually need to have but have been ignoring the topic entirely. He said that we need to talk about these things when Nathan is relatively healthy...but really, living in the land of denial is so much easier at this point. Nathan looks great right now, and it is extremely difficult to think of a day where he may not look this good health-wise. It makes my heart and stomach hurt.Alas, this pulmonologist has been there with us from the very beginning of this journey...he was the first specialist we saw in the hospital when Nate was 2 weeks old. He's been through a lot with us, and he seems to care about Nathan...we are officially on a first name basis, as he insists that I just call him by his first name (mainly because his last name is so stinkin' hard to pronounce). So even though it took me by surprise when he brought up the conversation about the "future" and gave me a depth of sadness that is so hard to explain, I do appreciate him bringing up these difficult things we have to think about in regards to our son. But good grief...the reality of everything is so hard to swallow sometimes...especially when he looks so "normal" right now, for the most part. Some days are so incredibly tough. This is one of those days where I just wish I could rewind and never have to live through.Nate must have known that I was quite "down in the dumps" this afternoon because he decided to lift my spirits quite a bit. Little dude decided that during his "naked time" (he needed some "airing-out", okay?), he would eat his own poo. Yep...even with 3 kids under wing, there is a FIRST for everything! Not only did he eat his own poo, but he had the biggest grin ever when his sisters and I were screaming at him. Obviously, he has no taste buds whatsoever (or else, lunch was good the second time around...okay, just scratch that thought...NASTY!). Despite the tough talks we have to have about our precious little boy, he is still just a boy...who is often up to NO GOOD whatsoever!