We then went to have breakfast with Teed. The pager around my neck reminded me of the seemingly unending days when the hospital was our home. It felt heavy and burdensome. Then it rang, I just about jumped out of my own skin. Not because it startled me, but because of the memories of a day just 2 year ago. The day my sweet baby got her new heart. That day the pager would ring when the surgeons wanted to update the family on the progress during surgery. Yesterday, as we reached the surgery desk, we were greeted by a smiling Doctor. The surgery went very well. Her heart looks good, the pressures have improved and he was excited to tell us the news.
Later the pager went off again, the nurse wanted the mom. Kamryn was in tears, disoriented and just plan mad. The little hoarse "hold you" just about broke my heart. But I couldn't hold her. She needed to lay flat for 4 hours after the procedure. So I laid across her bed, singing in her ear, holding her and stroking her little head. She calmed and was ready for the ECHO, EKG and Dr Law.
Kamryn's condition prior to the heart transplant is a rare form of cardiomyopathy. Non compaction is not a well studied or understood disease. Kamryn has gross motor issues. Dr. Law wants us to pursue more aggressively the cause of her delay. Kamryn doesn't jump, go up or down stairs, or run and she falls frequently. We will be seeing a neurologist and an orthopedist.
Keeping a 2 year old quiet and unmoving for 4 hours proved difficult. We resorted to almost 3 hours of Blues Clues, a dark room and lots of crackers. The dose of Tylenol helped too.
Today Kamryn is back to her chipper little self, with a lot of clinging. We have nothing better to do today, but cuddle and watch some TV. Maybe a nap too.
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Thank you for your prayers.
Psalms 111 1-4
Praise the Lord.[b]
in the council of the upright and in the assembly.
they are pondered by all who delight in them.
3 Glorious and majestic are his deeds,
and his righteousness endures forever.
4 He has caused his wonders to be remembered;
the Lord is gracious and compassionate.