On Tuesday, we made the trip to UCLA for lab draws and a visit to the Transplant Clinic. Noah has to have his blood drawn every month to make sure there are no signs of liver damage because one of the medications can be hard on the liver. After his labs, we met with the transplant team. Noah has gained some weight and has grown some. We are all happy about this. His EKG did not show any change from his last visit. We will discuss this with Dr. Chang when we see him on the 18th. They would like to see Noah every six weeks.
We were told that they got a call for a heart for Noah, but felt like it was not perfect enough so they passed it up. This brought me a lot of comfort to know that they want to make sure it is perfect. It is hard to wait, but we want it to be the best so we have the best possible outcome for him. We saw the transplant dentist who said Noah needs to have a baby tooth pulled and they would like him to get the flu shot.
This same morning I woke up with some pain in my left hip. I occasionally will get this pain in the evening after I have walked too much. When we got to UCLA it was difficult for me to walk and I had a bad fall right there on the tile floor. I was in tremendous pain and could not stand steady. The next day we had it x-rayed. Praise the Lord nothing was fractured, but it was very inflamed. I have been given pain meds and told to stay off of it until next week’s follow up. Never a dull moment around here. We do our best to keep it exciting. I feel like a dope sometimes. I have been very stubborn in not wanting to get AFO feet braces. They have recommended them for over a year and a half and I felt since I only fall occasionally, I could get away with it. Stubborn, right? If my son can take 10-15 medications, go through a heart transplant, and have to endure a mountain of change… I can certainly handle this.
Please pray that we would be able to get the mapping soon and that it would provide some answers. Please continue to pray that we would walk through these hard things joyfully knowing that God uses these difficulties so that the works of God can be displayed. Pray for Noah that we can help him process this well.
We appreciate all of you so much.