If at first you don’t succeed…
As everyone knows, perhaps the biggest issue that we have dealt with in Haven’s recovery has been the excessive amount of fluid that drains from both sides of her chest cavity. While it’s true that this is perhaps not the most serious issue we’ve dealt with, it is certainly the longest lasting issue that is preventing her from moving forward with recovery and preperation for her second stage procedure (please refer to the HLHS page for more details regarding the second stage). It has also been very perplexing because just about every doctor here has said that they’ve never encountered a Norwood baby (or any baby her size and age, for that matter) that has had such cronic chest fluid accumulation and production.Â
As you know, we’ve tried several medications along with several surgical procedures but the fluid doesn’t seem to stopping or at least slowing down as much as they would hope to see. This morning another surgeon suggested we try a new medication (Nitroglycerin) to try stopping the fluid. This is used primarily in adults and has been occassionally used in children, but not very often in babies this young. Well, we certainly don’t want to get our hopes up (because the fluid output has been up and down and up and down too many times), but over these first twelve hours she has produced dramatically less chest fluid (especially from the left side). We’re anxious to see what the next 24 hours or so will hold.Â
As far as other issues, they would like to start feeds as soon as possible, but we don’t want to risk triggering more chest fluid accumulation. Also, her tissues are still holding a good deal of fluid so digestion is not very comfortable and breathing completely on her own will be tough until she can shed some of that fluid. Haven is, however, working on lowering her ventilator settings and mobilizing fluid from her tissues, so we’re getting there. We’ll certainly be looking forward to updating you tomorrow on her progress.
Posted in Recovery #1 | 4 Comments »
March 19th, 2007 at 6:26 am
Good morning Johnson family! It looks like you had a relatively calm weekend…minus the whole “homeless tube” situation. It sure is wonderful to read that the chest fluid seems to reduced. It is time for Haven to get rid of all of those tubes!! But she is such a great little fighter. I am impressed and amazed by the strength that she has. If only I could be that strong.
I am praying for all of you. Mom and Dad, keep up the good work. I look forward to a day when I meet Haven! Until then, take good care of her. 🙂
March 19th, 2007 at 6:27 am
P.S.-I just saw the timeline. It amazes me! Thank you for posting it.
March 19th, 2007 at 9:37 am
Hello Johnson family! My name is Amanda Isch and I am a 2006 Adams Central graduate. And wow…I actually just heard about little Haven Leigh and her condition a couple of days ago. My thoughts and prayers go out to both of you and to your precious little girl. She is so beautiful and I have true faith that God can certainly work miracles. As I was looking over Haven’s website, I was so encouraged by your outlook on the whole situation. Yes, I’m sure it can be so discouraging at times, but your trust in God is truly a light and example to all of us who have visited the site…Thanks!
Keep hanging in there and once again, you all are in my thoughts and prayers!!
March 20th, 2007 at 4:23 pm
Uncle Gordy and I are back from Florida whee we kapt tabs on you but could not e-mail you. Haven seems to be during fairly well. We are so proud of you all, your continued Faith is an inspiration to all of us. We will continue to pray for your strength, progress and patience. Lots of love to you!