Friday, March 26, 2010

Cardiac Clinic

Keegan went to cardiac clinic on Monday.  No time like the present to update, right?!  Sorry for the delay, and we appreciate the prayers for a good appointment.  They were certainly answered.  It was a long day, mainly because there were just so many kids trying to make up their appointments from Spring Break.  Keegan's chest xray and EKG looked great.  He doesn't get another echo until September!  His weight was up a little more - he's 29.5 lbs now!  We dropped one of his medications, Lasix, and will watch his blood pressure closely to make sure he truly doesn't need it anymore (we check his BP twice a day everyday at home and will for the rest of his life). 

We did add two new vitamins to his repetoire - E & C.  A combination of these two vitamins have been shown to do better than statin medications to prevent coronary artery disease.  Statins can cause liver problems, GI problems, and developmental delays in some studies.  Well, we already have liver and GI problems, and we certainly don't need more developmental delays!  Coronary artery disease and the corresponding heart attack are the leading cause of death among heart transplant recipients after the first two years.  Keegan needed to be on something to protect his heart, but his liver and GI system couldn't handle the statins.  But there are NO side effects to the vitamins!  Once he can swallow pills or chew tablets, these two will be easy to give him.  Until then, it's a little bit of a pain in the rear, but honestly, it's still easier than TPN or tube feeds!

As always, his labs were the biggest question mark of the day.  His red blood cell count remained stable; further evidence that he's kicked his anemia of chronic disease!  His kidney numbers were also stable, and although still elevated, his liver numbers have stayed within what we've just deemed Keegan's normal range.  His immunosuppressant levels were low, so we've increased his dose a hair and will recheck it next week.  The biggest "what??" was with his white blood cell count (infection fighters).  As you know, we give Keegan shots twice a week to boost this number because Keegan's have always been low.  We don't need him suppressing himself on top of what we already do to protect his heart.  I won't go into the long explanation, but we decided to recheck this number on Wednesday.  It was better then, so we've decided to trial run Keegan on one shot per week!  We'll be rechecking his levels again next week along with his other labs and will need at least two more sets of labs to determine if he can stay on one shot a week.  It continues to give us hope that as Keegan eats more and gets better nutrition, he may not need the shots anymore.  His hematologist has set the bar of what's acceptable fairly low.  We're not expecting he'll be able to get to a "normal" level with one shot or no shots for that matter, but as long as he doesn't completely crater, we'll be ok with it.

Tomorrow we'll increase his daily rate of tube feeds again, and that should leave him with less than 3.5 hours of tube feeds during the day!  He's been having some pretty good feeding moments lately, and although the road ahead is still long, I'm hoping that his recent weight gain will help us get off the daytime tube feeds even faster!

Good news! - One of my best friends, Marci, had her first little baby boy on Thursday.  Welcome, little Noah!  I got to meet him today, and he's just a precious little bundle of boy!  Mama and baby are doing well, and we are so happy for Marci & Todd. 
Bad news! - Carter is still inpatient in Boston.  He's had some scary ups and downs the last week especially, but if his liver numbers go down next week, they should be able to be discharged locally and hopefully on their way home soon after that.  Please continue to keep them in your prayers.  The journey has been long and hard, but they're hoping to come home well and stay there!

Thank you once again for all your support and prayers.  I know it sounds like a broken record, but we truly can't tell you how much they are appreciated.  You give us strength to continue each day, and we are so blessed.  Thank you.

No comments: