It has been a month since I was discharged from the hospital and my heart is full of gratitude for all that the Lord has done to restore my health. We never saw the magnitude of this situation coming but as I look back I can see the ways the Lord was preparing me. A few months before I got sick Noah’s UCLA team brought on a Cardiologist from the adult side and we met with him. I really liked this doctor and his great bedside manner. I appreciated the way he explained things and his bluntness. It got me thinking that I really needed to switch my care from a pediatric doctor where I wouldn’t be able to be seen at a children’s hospital to a better team and hospital. UCLA is not close but it is a great hospital with people who not only understand heart failure but have expertise with muscular dystrophy. I got all of my paperwork transferred to UCLA and just a week before I got sick I was seen by Dr. Cruz at UCLA. It was a good apt. and I walked away feeling like I had made a good decision in switching my care. This situation would be confirmed when a week later I messaged him explaining how sick I was and less than 24 hours he was on a tele health video chat with me. He urged me to come in and told me they would have a bed waiting and we could bypass the ER. UCLA was incredible to me and I had total piece it was where I was suppose to be. It was amazing to me how the Lord orchestrated the timing of it all.
Since being home I have been spending time meditating, reciting, and memorizing Psalm 107. The main theme of this chapter of Psalms is “They cried out to the Lord in their troubles and he delivered them from their distress. I saw this to be true over and over again in the hospital. I can’t tell you how many times I cried out to the Lord for his mercy and every time he came through. I would cry out to take away pain, to help me breathe, to allow my husband to be with me, to not be intubated, to go home, and to be able to go back to my baseline. There were prayers he didn’t answer like me wanting to make it to Hannah’s baptism. When that happens I have to trust that his ways are better than mine. They always are. Her baptism is just postponed but it will happen and what a glorious day it will be. Im just so grateful. Sixteen days in the hospital was a lot and so many of you have told me you were scared I wouldn’t pull through. My heart grieves for the pain you must have felt and if I’m honest there was a moment I felt the same. I’m grateful for all of your prayers, love and support. Our family has been given some unique medical challenges. It is sometimes overwhelming to me both physically and emotionally. Each time we go through something we get an opportunity to see the magnitude of the Lord and often times it’s by the way he uses you his people.
We are coming to you once again to ask for prayer for our family. Noah’s heart failure continues to increase. His numbers continue to rise and honestly the doctors are even surprised he’s still at home doing ok. It’s basically a waiting game as we try to manage it with medications while we wait for a heart. Our hope was Noah could improve and come off the List like he did so many years ago. The doctors have all said this is not the case and that he really needs a heart. I can’t get myself to pray for a new heart so I’m praying the Lords will for Noah and protection over his body. I know the Lord has purpose in all of this and we pray that he would help us to lean on him and to give us strength to endure the next wave.
