Well, Addy had her Glenn procedure yesterday. It went even faster by expected with only a 44 minute bypass time and no cross clamp (for all our nurse friends!). Dr Bischell was done by 10:30 in the morning and she was moved back to our home in the PCICU. There were absolutely no complications with the surgery. He said that she had no scarring and her bleeding was absolutely minimal. Although we originally hoped that she would extubate yesterday she hasn't quite made it off the ventilator yet. She has a left sided effusion (which isn't uncommon) today and got quite fluid overloaded throughout the night until they restarted her diuretics. Her vent rate and support is weaned to minimal settings except she is requiring 60% oxygen, probably because of the fluid. If we can get her diuresed today we are still optimistic that she will come of the ventilator this afternoon. She is on a precedex infusion for sedation to keep her comfortable and she gets Morphine for her pain when she needs it. Our Addy has always been a very "pink" heart baby but over the last few weeks the signs that she was ready for this surgery. She didn't want to eat as much and it was apparent that she was working hard to breathe. Her hands and feet were more dusky and sweaty than they used to be. Now it is amazing how pink she is again. Her hands and feet are warm and dry, no longer purple looking!
It is hard to believe that yesterday we actually had the Glenn. It seems like we just took her home last week but it really has been 4 months. All of her "aunts & uncles" in the ICU can't believe how big she has gotten since we were here last. Our cardiologist really put it into perspective yesterday when she told us that we left that second 20% mortality statistic at the door yesterday. We have now overcome the 40% mortality associated with this disease before her Glenn. Although we are not out of the woods yet things are expected to be much better after this surgery. Hopefully after we get her home she will be allowed to go to feeding on demand and we will be done with having a feeding tube in her nose all the time! We have seen our cardiologist at least once a week since we went home after the Norwood but our cardiologist told us yesterday that after her initial post operative visit we will only have to see her every 3 months! I couldn't believe it but it really put it into perspective that they are that much LESS worried about her after this procedure. We have had so much support through this journey from family and friends that we appreciate so much. Everyone has sent out prayers for her and our family that have really helped. Our friends in the unit have been wondeful and it has made dealing with the difficult part of being the patient instead of the nurse a lot easier. It is incredibly difficult to go from the nurse side of the bed to the patient/parent side. We are used to being the one working on the patients, not the ones that are sent out to the waiting room when something happens. Thankfully, we have come to an agreement this time that we will not be kicked out of the room for intubations and extubations, but I will still leave for sterile procedures if needed. There are times where our knowledge as nurses has been a mixed blessing but overall I really believe that God led Heath and I to be cardiac nurses for a reason, which we now know. Our Addy needed us to be able to fight for her so that she can grow up and be a poster child for how wonderful a child with half a heart can live! We thank everyone for your support and prayers and love you all!
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