It is so remarkable at how quickly these little heart babies can change and go down hill so so fast. It is safe to say that Gracie is the sickest baby in the unit after the little sweetheart that had her heart transplant and isn't doing so well. Please pray for the "other Gracie," she has been through so much and is truly in need of many miracles. I pray that Heavenly Father will inspire the surgeons, doctors, and nurses to know what they can do to save this baby's heart and allow it to work in the other Gracie's body.
Ok now on to my little Grace---it has been a whirlwind of emotion. Saturday night she finally slept well after no sleep for two days, her vitals were better than they had been even when she was on the floor. She woke up on Sunday and was a little cranky but was still playful, around 9am the nurse changed her PICC line dressing and needed to call IV team to re suture it. Gracie got mad and ticked off but with the help of some morphine she settled down and slept for 45 min. But she woke up quickly with low sats and screaming and the downward spiral began. Within 45 minutes her sats dropped to the high 50s and we couldn't get them past 62 even on four liters of oxygen. This continued for almost four hours and finally Annie the nurse practitioner for the cardiothoraxic team decided it was time to move her to the PICU.
We brought her down and immediately put her on high flow of 6 and 100% oxygen and still her sats were only in the low sixty's. They began to talk intubation and finally decided to intubate, I broke down and left. When we came back 30 minutes later they were hooking her up to the CPAP machine, after about two hours on that and no improvement they intubated her. Within 45 minutes her sats were stable and in the low 70s---though not where we want them, we were happier with them then the 60 sats.
Gracie immediately fought each and every attempt at giving her the oxygen she needed, she finally needed to be paralyized and sedated (with four major IV sedatives because she has built up such a tolerance). Around 6am her sats began to drop again into the high 60s and they then put her on nitric gas which seems to be the trick to open up her lungs enough to get her sats to 75. There still is no explanation for what has happened which is the most aggravating of all. An echo was done and things seem to look like they did last week--which is fairly good. There is a possibility that they may do another cath, but right now we need to give Gracie a couple of days to rest and recover from yesterday. Right now they are tapping her lungs for pockets of fluid, I don't think that they think this will help her much but feel that since the pockets have been there for awhile it needs to be done.
Right now all we can do is give Gracie some time to rest and hope that in a couple of days we will be able to find out what really is going on. I spoke to Annie this afternoon and though yesterday we felt that weaning her diuretics was the culprit, we don't think it is the main thing that is going on. If anything weaning the diuretics may have helped bring whatever is happening to the surface quicker than sending her home and having her crash on us.
Please keep us and our family in your prayers and please especially pray for both baby Gracies that they will be helped and healed in the ways that they need--both have had incredibly hard roads and have fought too hard to stop fighting and give up.