We are constantly amazed at how rapidly things change with our situation. Last week we were thrilled to hear how well Noah's pressures were in his heart after his heart cath. They were contemplating taking him off the transplant list for awhile. We drove down to UCLA and had a wonderful meeting with the transplant team who answered all of our questions. We walked away feeling at peace with the decision. Over the weekend we started making vacation plans and getting excited about our family being able to travel and not worrying about "getting the call". Still I found myself not being able to fully be excited. I was waiting for the next shoe to drop, the next storm. It seems over the last three years nothing has been calm for us and I was holding onto this new news very loosely. I knew that at any moment things could drastically turn for Noah and I think it is just a way to safe guard my heart in this process. Still as much as you safe guard yourself or prepare it still is hard when the storm comes.
Tuesday we had more sets of doctor appointments. This time Hannah and Noah were both seeing Dr. Chang for heart Echo's and check ups. At this appointment the storm hit again. The team at UCLA had not talked with Dr. Chang yet about their decision to take him off the list for awhile. Dr. Chang was very upset and did not agree with this decision. He has very strong reasons and after the team heard his thoughts they are taking them into consideration. On Tuesday a team of several pediatric cardiologists, surgeons, and the transplant team will meet for a round table discussion to discuss Noah's case. Right now Noah has not been taken off the list but is on an internal hold until this matter gets decided. I can't even tell you what an emotional battle this has been this week. On top of all that , Wednesday Noah had a bad episode. He yelled for me from the other room. When I got to him he was clenching his chest telling me it really hurts. It lasted about a minute and he had many little ones that followed. He started to cry and said he just wants it over with. It breaks my heart to see him in discomfort. He is fine and the pains are one of the things Dr. Chang is concerned about because he has had them consistently for the last two years with no improvement and somedays they are worse.
Please pray for this decision. Pray for our nerves. Pray that Noah would be ok with the outcome. It is such a roller coaster ride and we would love to have some calm back. Pray that we would continually be leaning on the promises of God. Grateful for you all.