For the first time since we discovered Jordan had CDH, we received some very good news. We were introduced to Dr. Adzick, the head surgeon of the NICU and one of the significant reasons we chose CHOP. Our first impression of him is that he is a remarkable man. He recently received surgery himself, had just got out of an operation this morning and had board meetings to get to after visiting with us. Dr. Adzick mentioned he is originally from St. Louis and he then told us with a smile, "The best people are from the midwest."
Because Dr. Adzick was so busy yesterday, we did not have a chance to meet him in person. By this meeting, he thoroughly reviewed all of our results from yesterday. Apparently, the ultrasound detected better lung volume than the MRI. He gave Jordan a much better prognosis and mentioned that his chances are calculated at somewhere around 60-70% (based on their research). Dr. Adzick went on to mention that this is just a statistic. Jordan's chances are 0% if he dies and are 100% if he lives. It is up to Jordan and how he responds to treatment.
As for the fetal surgeries, such as the tracheal occlusion, we were anxious to hear what Dr. Adzick had to say. He has been in this field for 30 years and has seen the various methods used in trials. Even though they will soon begin testing this procedure again, CHOP does not participate in the fetal treatments for CDH. He says they just haven't seen the evidence to support that is has enough benefits as compared to the risks. Although they are conducting the experimental treatments in Europe, Jordan is not severe enough to qualify for tracheal occlusion. Jordan's case is extreme, but the good news is that his heart looks very good.
After our introduction to Dr. Adzick, we received some very good news about financial assistance. One of the infants that had a successful operation at CHOP belonged to a wealthy and generous family that made a large donation to help families with the cost of travel. CHOP will pay for and arrange our future flights. Also, with some persistence, it sounds like we may qualify for partial financial assistance of what our health insurance doesn't cover.
I was able to convince Brandi that it was important to tour the NICU before we left the hospital. Understandably, she was concerned she would break down to see infants under treatment. It ended up being a very good thing and it wasn't as overwhelming as we expected. The social worker giving the tour was very knowledgeable and gave us a ton of information. We actually got to see an infant on ECMO. They sedate the infants so that they don't fight treatment and they are hooked up to breathing machines, an IV, a feeder, medicines, a warmer, etc. Everything is closley monitored and the environment is quiet and sterile.
Brandi and I had to have our blood drawn for gentic testing and Brandi had an amniocentesis. We should get the results over the next few weeks. Our flight to KCI will leave at 8:55pm tonight - putting us in KC around 11:00pm. We will spend the night there and drive home in the morning.
Overall, today was much better. We still want to enjoy the pregnancy as much as possible and we feel that Jordan has a fighting chance.
Wonderful news! We will be continuing to pray for you all.ReplyDelete
Yes!! We love good news! And you guys. Can't wait to see you again!ReplyDelete