Update on being sick and cardio news

First, the update. Connie is still sick. His fever is gone, but his cough is the same and he's been complaining of pain in his left ear as well. His pediatrician changed his antiobiotic from Amoxicillan to Augmentin. We're supposed to check back in three days to let him know if he's improving. The biggest problem is his sleeping is all screwed up. He's waking 4-5 times a night either in pain or just not feeling well and because of this, is napping about three times a day! He's just been miserable and whiny and not himself.

Now for the cardio news. I got a call out of the blue today from his cardiologist. He said that he's been thinking about Connie for weeks now and is wondering if he's feeling better since we took him in right before Christmas. If you remember, he had had two little scares with high heart rates and vomiting and acting like he was in flutter again and both times checked out okay. Well, Dr. Bromberg did look at his late December echo the day after it was done and it did look to him like the LV function might be down a bit. Of course, he wasn't in the office to examine him and his partners read the echo and compared it with Septembers and saw no change, but he said it was different and it may just be that a different tech did the echo than the one that normally does, or it may be that his Left Ventricle is indeed not squeezing as well. Either way, he wants to see him sooner than the Feb. 15th appt. we had set up and make some adjustments to the pacemaker settings. We're going in next Thursday and he wants another echo and to change the pacer. He might try uncoordinating the V pacing from the A pacing. What can sometimes happen in patients who are artificially paced is a weakening of the LV over time. He suspects that what might be happening is that when his atrial rate is increased (illness or whatever) that it is forcing the ventricle to do the same and overworking it causing it to weaken. This is generally not a problem once children get older and have a much lower resting heart rate. For now, we know that Connie's rate does increase on occasion for no good reason (that we can see anyway) and for this reason, we think pacing the ventricle in a different way, one in which does not correspond directly to the atrial rate, might help his function improve. It might not. It might cause other problems. We won't know until we try and for now that is the plan. After it's adjusted, he'll wait for feedback from us on what changes, if any, we notice in his energy level, sleep, etc. Then he'll repeat an echo 4-6 weeks out and see if there is any noticeable difference there.

While I was surprised in a negative way to hear from Dr. Bromberg, I can't explain to you how good it made me feel. I mean, he's been thinking about my boy since before Christmas and trying to figure out exactly what could be triggering this and he thinks he's got a solution now and that's pretty neat. I don't think there are that many doctors that try so hard for one patient.

Sick Again

Hello All! Hoping everyone had a wonderful Christmas. We sure did. Connie's new favorite phrase was "Happy Christmas!" and he would say it frequently. We modified it to add "Happy New Year" but instead it turned out "Happy Christmas Year Year!" It sounds so adorable coming from his little voice. It's been awhile since we've posted anything about him or new pics so I'll just jot down a few things that come to mind. He's still completely obsessed with bowling. He can turn anything into a bowling set. He loves to paint and got an easel from Grandma and Grandpa for Christmas. He names all the colors that he wants to paint with and does a good job asking for more when one is all gone. Other times, he just sets up all the paint bottles and bowls them down. Like I said, he can turn anything into bowling! When he's not bowling, he's playing the Wii. It started with him bowling on the Wii, but now he knows how to play pretty much every game on Wii Sports Resort. He'd spend hours downstairs playing if we let him. At least when he's down there he's not aggravating the daylights out of his sister Mary Kathleen. During breakfast he's become fond of watching Super Why, a PBS cartoon about fairy tales and reading. He requests to watch this show no less than 50 times a day.

Well, the main purpose of this post was to let you know that he's got a fever, cough and drainage (still clear). The cough sounds very much like when he had the croup at Thanksgiving, but that was not accompanied by runny nose or anything else. Last night I took him out in the night air for a few minutes and that seemed to help. Today he was annoyed with the drainage and had no appetite, but overall was pretty pleasant and feeling better. By dinner time tonight the cough was increasing and the fever came back. He had been in bed a little over an hour, and sound asleep, when he woke up coughing and wheezing again. I had given him albuterol and motrin along with his regular heart meds before bed, but the cough continues to prevent him from sleeping and the difficulty breathing is making him scared. I used the nebulizer again with just water and that calmed him down. He's back in bed now but I'm a little leary, if his condition worsens, of taking him for a car ride with the windows open in these extreme temperatures (which is what was recommended by the nurses when he had this cough before). They are saying the wind chill is supposed to be around minus 24F tonight! Please pray that he gets some rest and that the cough improves.