We got some bad news today. Lily's last echo now shows worsening leakage in her mitral valve. It has gone from mild to moderate but it is not in the severe category where it was before her surgery. Now we have to worry about that again as well as her not tolerating her feeds and the mold that may still be in her system. The cardiologist said that he doesn't want to go just by one echo before making a decision and there are other options. Lily could go home with a tracheotomy to help her breath if necessary. The worst case scenario would be surgery number four to replace her mitral valve with an artificial one. At this point, there are more things that need to happen before any decisions can be made. They are going to start by weaning her off the ventillator and see how far that takes her.
Some good news is that her blood cultures are still negative. They also took a stool sample to see if she has c-difficil bacteria but that turned up negative as well.
Kim and I are both spent and there is no end in sight to Lily's ICU stay at this time.
3 comments:
Im so sorry that you've received bad news. My heart is absolutely breaking for you guys...
I will continue to think of you and your family and send all of the healing vibes I can muster.
Hi - I wish I could talk to you in person. My 20 month old Julia (who has DS) went thru this EXACT same thing last year. Her 4th heart surgery, at 4 months of age was to put her mechanical valve in. She had been on the vent for 10 weeks when she went in for that surgery. Once the leak was fixed, her lungs improved dramatically. I wish we had skipped surgery #3 which was the MV repair and had just gone for the replacement.
Before the replacement, her lungs were getting beaten up badly by the turbulent blood flow. She also stopped tolerating feeds, had constant fevers, line infections etc.
I was just amazed at how quickly she got better after getting her valve fixed. Yes, she will need another surgery in the next year as she has a 15mm valve and is outgrowing it. It was absolutely the right choice for us.
I know how hard the hospital stay is. We were there for the better part of 8 months and were in the PICU for most of that time, with a 2 yr old at home. I know how hard it is to go for weeks without seeing improvement. Please email me if I could be of any help with questions.
Your family is in my prayers.
Kimberly Diokno
kdiokno@gmail.com
This is Joyce. Oh darn. We have been without a computer for a few days and the last we read it seemed things were turning in the right direction. I just read the comments written by tarheelmom and it seems so similiar. Hopfully that will be the case with Lily too. I can tell you our Sarah did end up with a trach after her six month stay at the Clinic. Although it sounds scary, it really was the turning point for Sarah and she handled it quite well.
One totally off the wall bit of advice: watch your speed, especially if you come down Chester with those cameras. You are about at the timeframe that I started getting speeding tickets. You are so spent that your body just goes into auto pilot, actually I think the car could just get to the parking garage on it's own, and I just wasn't as aware of my surroundings. From my experience, the cops don't care how long your daughter has been in the hospital:)
Please know you and Kim continue to be in our prayers.
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