After a last minute cardiology appointment to Children's last week, it looks like Maddie needs another cath. We've been noticing her increased blueness, lack of energy and decreased appetite. I periodically check her sats and heart rate and last Monday, her sats were 74 (which is still in her range) but heart rate stayed in the 70's for a good 5 minutes. Her normal heart rate is in the 120's-130's at rest, so this was low and abnormal for her. I always try to do her sat checks the same (sitting in my lap & reading books), so when I saw this reading with a great tracing, I became concerned and called the nurses line at Children's. They advised that we go see her pediatrician and get another reading. So by at her peds office, she was back to her norm and it left us with nothing to really worry about.
We still followed through with cardiology since we were lucky enough to be squeezed in. Maddie's next appointment was supposed to be in June (6 months stretch from her last). So, my mom and I headed over the pass with her last Thursday for her cardiology appointment. Since Dr. Vernon is on maternity leave, we were able to see Dr. Chun again. He knows Maddie well so that was reassuring. She had the full workup...and the highlight of the day was she was an absolute ANGEL for her echo!!! I was not expecting this since her last dr's appointments included pokes and she's been pretty tearful the last few times we've been in a doctors office. But the memory of her past appointments kicked in when we arrived to the exam room for her EKG and exam. Thank goodness she was such a big girl during her echo because it showed us the possible reasons why she's declined in energy and looks more like a smurf lately. Her pulmonary arteries have not grown and measured much smaller than her last measurements. She has more stenosis in those areas. Dr. Chun also mentioned that collateral vessels may be stealing blood flow again and she could probably use some coils. Dr. Chun advised that we better get her to the cath lab soon for another look in there. So we're waiting to hear from scheduling on when. We should know by the end of this week, I hope.
I was actually relieved after this appointment, even though another procedure is looming in our near future. I always wonder about her heart, always worry about her puny pulmonary arteries and have often thought that her "symptoms" could be from those unwanted collaterals she creates.
After her cath last year, where Dr. Jones put in 4 coils, he made the comment that she may continue to grow the collaterals which in turn, decrease the flow through her pulmonary arteries. This can result in the lack of growth for her PA's. They need to grow in order for her next major surgery to work. I'm just glad we're staying on top of this and if it takes a tune-up in the cath lab once in a while, we'll do what it takes.
We were stuck on the pass for about an hour on our way home due to the roads being closed. Here's Maddie enjoying her freedom from the carseat...thanks Nany for coming along too! You're always so much help :)
Maddie also had to wear a Holter Monitor for 24 hours to record her heart's activity. I kept a journal as well to tell what she was up to so it may explain what her heart is doing during certain activities. We should get this Holter study report back within a couple of weeks.
She looked like a little doctor with her pager...it counted down the seconds until her study was through. Then I fed-ex'd it back to Children's! It worked slick although she didn't enjoy it much. She kept repeating to us "doctor's hurt", "doctors off" and "owiees". So goes the life of a heart kid.
Because Lil' Miss is looking this purply-blue all of the time now, and her sats are a stinkin' 68-70, her heart catheterization is being bumped up. It is just 2 weeks away now instead of waiting another month. I am sooo glad...she really is needing the help. Her days consist of 2-3 naps now, laying on the floor to rest more than playing and constant chilly hands and feet. Even on warm days. It's not fun watching her go down this road and I'll look forward to seeing more of a pink girl after this cath. Her heart just needs the help. The only perk of her being like this is she loves to be in my lap. She climbs up, catches her breath & rests, then off to play until she quickly tires out again and lays on the floor or climbs back into my lap. I love all of the cuddle time we're getting but it's also a reminder that she's not a "typical, on-the-go" 2 year old.
