Wednesday, August 3, 2011

Boston Children's Hospital- 8/3/11

Today we spent the day at Boston Children's Hospital.  McKenna had a sedated echocardiogram at 9 am (we checked in and started sedation at 8 am), a consult with Dr. Newburger (her cardiologist, who specializes in Kawasaki Disease) at 10:30, and a consult and x-rays with her plastic surgeon at 1:00.  We finally got in the car at around 2:45, so it was a long day, but it was a really good day.  She was such a trooper, and hung in there through lots of long, unpleasant, exhausting appointments. 
Her echo shows some continued improvement in one of her aneurysms and a very slight improvement in the other.  Based on her current measurements, Dr. Newburger said that she feels the chances of her developing a clot are very small, which is great news.  She also said that she felt it would be safe for her to have her hand surgery soon, even though that will mean that she has to come off of all of her anti-coagulation meds for a time.  She feels that once the surgery is over, it will be ok to change her medication regime to either asprin only or asprin and Plavix.  Both options are better than what we are doing now, since that will mean we can stop giving her the Lovenox injections twice a day!!  The poor thing has been having injections twice a day for five and a half months now, and her little legs would be very happy not to have bruises all over them anymore.  And her mommy and daddy would be VERY happy not to have to give her injections anymore...  So that is all great news and gives us lots of hope for some big improvements very soon.
Then we met with Dr. Taghinia, her plastic surgeon.  We haven't seen him since our initial consult when she was about two months old.  He and Dr. Newburger have been in touch several times about her care, however, and it is so nice to have doctors who are willing to collaborate so well to make sure that she is getting the best possible treatment.  He was thrilled to hear that she has been cleared for surgery, and we will be scheduling it next week.  It is likely to be sometime in September.  While I completely dread the thought of our sweet girl having surgery, I am also excited for it to be over and for her to have fuller use of her fingers.  She will be in a cast for about a month, and then will have splints on her fingers for another six weeks after that.  Lord help us.....  Its going to be an interesting fall, since I am sure our sweet, fiesty girl is not going to be amused by either of those things.  Yikes....
In any event, we continue to be completely impressed by everyone that we encounter at Children's.  It is an amazingly kind, compassionate, friendly, down-to-earth place, with incredible doctors, nurses, and staff members.  Everyone there is just fantastic.  They have recently been ranked by US News and World Report as the #1 Children's Hospital in the country. We feel so blessed to have McKenna's treatment team located at such a phenomenal place.
And we are so thankful for the ongoing prayers of so many people throughout these past several months.  We know that God has healed her thus far and will continue to work in His perfect way in all that is to come.  So keep it coming!

2 comments:

  1. so glad the news is promising....and i hope that things calm down for you soon....you have had quite the year my friend!

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  2. Glad you're moving along. Really praying for no more injections.
    Sarah

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