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Archive for February, 2012

“It’s a Good Day”

We started the morning at 2:00, then 3:00, then again at 4:00, and finally at 5:00 we let ourselves get up and going in order to leave by 6:00am.  Our first appointment was with the echo lab.  The ultrasound tech took over an hour to get pictures of Ben’s heart.  Of course that makes Chris and I nervous.  I mean really nervous.  This special attention to details made us late for our cardiology appointment, which made us late for  hypertension, which finally made us late for labs.  Ugh!

We finally made it to see Dr. Altman and she starts like this . . . “Here is the good news.”  Which implied to Chris and I that this would be followed up with some bad news.  She gets to the end of the good news and says, “So it’s a good day!!!”  Chris and I look at each other with shock/surprise and Chris says, “Why didn’t you tell us that to begin with?”  The doctor apologized and said that next time she will start out that way!!  We were so thrilled to hear all of it!!

The Good News

There are no significant changes to the leak in the aortic valve.  He still has a moderate leak, but he can live this way for a while before intervention is needed.  There is a slight bump where the subaortic membrane was, but she believes this is a residual bump.  Her only area of concern is that there is some slight narrowing of the sinotubular junction (which is where the surgeon places a Dacron patch at the last surgery). The area is not large enough to support Ben’s mass (body weight), but at this moment there does not seem to be any back pressure in the heart from this narrowing of the aorta (which is good). There is still some leaking in the mitral valve, but again it is still not getting worse.

Ben can still be in gymnastics (but she would rather see him on the swim team), but if he started doing competition level gymnastics, she would have concerns!  Ben can go to camp with strict supervision.  And most importantly, Ben gets to have a treadmill test at his next visit.

She is not ready to release Ben from seeing him every six months.  Ben has a bad history of his health taking a dramatic turn in a six month period of time.  So she is too nervous about letting him go yet!  But she is letting him change his ace inhibitor from a twice a day to a once a day (same dose different delivery method).

The hypertension clinic saw Ben and agreed that Ben can change his meds to a once a day.  We will have to watch him closely while the transition takes place, but this will help Mommy with delivery (if Ben falls asleep early, I have to wake him up for his meds.  I will not wake him up for fish pills and melatonin!) She thought his vitals were slightly elevated, but it could be because he has been on the same dose for two years and he might be starting to outgrow his current dose.

So all in all.  A very awesome day.  A great relief.  We celebrated by starting our lunch with dessert first.  It was a great way to start the meal.  We finally managed to get home before 4pm.  Papa and Grandma Lake held down the fort while we were in Houston.  They set the bar pretty high for us.  The kids got to school on time, well dressed, and with a good breakfast.  Madie informed me of my shortcomings!!  The girls enjoyed their special time with the grandparents.  We were thankful that we didn’t have to worry about them on a day like today.

We are grateful to God for our day today.  He blessed us with good news.  He blessed us with many friends and family members who kept Ben and the family in their prayers today.  It is certainly time to celebrate.  We can party for six more months until we see Dr. Altman again.  I’ll take today and pray that it is repeated many  times over!!

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I’ve had this nervous energy for a couple of days.  I was so tired (only averaging about 4 hours of sleep a night) that my head was too cloudy to really think about why I felt this way.  So I crashed last night (knew I needed to go to bed when I couldn’t add/subtract properly, read, or even remember the names of items . . . like milk), and woke up thinking more clearly.  This was good.  For several days, I have that kind of “hyper focus” energy.  It is helping me to get stuff done, but making me snippy in the process.  I feel bad about that.  Then the phone call came this morning reminding me that Ben has a doctor’s appointment on Monday.  Ugh.  This is reason for my angst. Ben has his six months checkup at Texas Children’s Hospital.  These visits can go one of two ways. 1.  Awesome – everything is status quo + we see the doctor again in six months = six more months of freedom from bad health stuff.  2.  Not good – things aren’t going well + we need to see you again soon = unwanted health drama.

I dread these visits.  I am surprised how I only started thinking about this visit this week.  I think that I getting more use to it.   But a parent really does have to gear themselves up for this kind of visit.  Even the  strongest parent has to do some personal prep in order to be as strong as the Rock of Gibraltar.  I pray for good news and prepare for bad.  Seems like that is pessimistic and wrong but I promise that I am optimistic and I really do think that we will hear that Ben is fine.

So we have a busy weekend to keep us occupied.  We are cleaning tonight.  Art classes in the morning.  Science convention in the afternoon.  Then church and Super Bowl Party/Small Group Bible Study on Sunday.  Daddy is gone tonight and tomorrow for a church council retreat, but we will have fun without him.  And some time in between I need to spend a lot of time in my office  . . . working on work. Hopefully I will get it all done.  But working towards that goal of getting it all done will keep my mind for what may come on Monday.

 

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