Things have been going well here but when you have a house full of children that are medically fragile/special needs, there are things that are going to come up with their health often, we try to just trust God and take them in stride. The newest health issues have been with Elizabeth. She was born very fragile, with many serious life threatening health issues. She has done very well, by the grace of God but there are things we have to monitor her whole life, like her air way, her hearing loss and her heart.
She was born with a three chamber heart and will need open heart surgeries, every so many years her whole life, to replace the parts they put in to fix it. These parts do not grow with her and break down over time. When they constrict or get pin holes and tears in them, she needs open heart surgery fast, in order to fix the issue before it becomes life threatening.
Elizabeth also has scoliosis. She is checked every six months to keep an eye on it. Her last orthopaedic appointment in March, showed that she had gone through a growth spurt and needs to have her back rodded as soon as possible. The doctor wanted to do the surgery this month. Elizabeth cried. She did not want to miss her ballet classes and June 4th recital. The doctor looked at his schedule and has scheduled the surgery for June 22. BUT...
Elizabeth has been having shortness of breath, low stamina, heart palpitations, blue hands and dizzy spells for the last three months. They have become a daily thing. I have a pulse-ox machine here at home and her oxygen levels have stayed good. I took her to her heart doctor on Thursday and he did an EKG and it came back good. She wore a heart harness for 24 hours to capture these episodes and see what exactly her heart is doing. It came back good as well. She had an ECHO cardiogram, which came back the same as six months ago. No worse. Her replaced conduit has moderate stenosis no different than last ECHO six months ago. So... Her growth spurt may have made the stenosis more of an issue or things are pointing to that she may have outgrown her airway. She was trached when she was four months old. Her vocal cords are paralyzed in the closed position. She needed a trach for many years. She finally grew enough, until she had room in her airway to breathe around her vocal cords. Her airway has a lot of scar tissue in it and gets tight as scar tissue builds up and does not grow and stretch over time. It actually thickens, constricts and often gets granulated tissue bumps on it. Those have to be lazered or burned away, to make more room in her airway so she can breath. Sometimes she also needs her airway dilated to stretch that scar tissue area that has constricted.
God is so good and I know that all things are in His mighty hands. He loves Elizabeth more than anyone else ever could and has a plan for her and her life.
Isaiah 43:2 When thou passest through the waters, I will be with thee; and through the rivers, they shall not overflow thee: when thou walkest through the fire, thou shalt not be burned; neither shall the flame kindle upon thee.