Update from Family Meeting Yesterday

Things here have been quite hectic the last 36 hours. As you all know, we found out early yesterday morning about Katharine's grandfather. The staff at the NICU were very supportive yesterday, many of them coming by to express their condolences and asking if we needed to reschedule our meeting. We felt it best to follow through with the plan. The meeting was very informative and there was quite a turn out of doctors and support team members to talk with us and answer questions. Here is what we learned:

• Elias is exceeding the expectations in terms of progress.
• The hematoma in his brain shows signs of improvement - nothing medically can be done, this will just take time.
• Further studies of his heart have shown a right sided arch and a mispositioned subclavian vein, rather than a double aortic arch.
• Esophagus repair looks very good. They were able to visually see this during bronchoscopy. There may be a need for follow ups further down the road for dilation, but it is not an immediate concern.
• His GI tract is working wonderfully. He is producing stools as he should.
• The imperforate anus repair will be done later. They noted there is no need to rush and success seems very realistic to the surgeon.
• Genetics was very pleased with his growth and development so far. From their testing they have not been able to attribute a syndrome to date. They are leaning towards clinically diagnosing him with VATER/VACTERL but want to still rule out fanconi syndrome, test results pending and expected in several weeks.
• The process now is to get him extubated successfully, then move his feeding tube back into his stomach to ensure he tolerates feeds this way. Remember they have the feeding tube past the stomach into the digestive tract.
• After he succeeds with those trials they will begin bolus feeds (all at once every 3 hours, rather than the continuous he is on now). Once that is successful, they will remove the feeding tube and begin nippling.
• Once he proves he can tolerate the feeds/nippling, then one of two things will happen. He will go home or transfer to a transitional facility. This will be another hospital about 20-30 minutes further away. Which scenario depends on Elias and what he demonstrates during this time.

In summary, his stay in the NICU seems to be drawing to an end. There are things that will need to be addressed, but they will be done after he is released. He will be seen every 3-4 months for follow up by the NICU team for development and of course the other issues to be addressed. It is still likely to be another month before the decision to transfer him or send him home will be made. Of course, if he has ANY problems or set backs that will delay things. For us, just knowing what the "final step" is helps us to see light at the end of the tunnel.

As we speak Elias is having a procedure done with his kidneys to evaluate them. This study should verify functionality and show if there are any abnormalities in the tract. We will have results for that tonight, but will not be able to post until tomorrow. We will be driving down to meet Katharine's sister in the morning so that they can drive to the funeral. I will be coming back here to be with Elias, since they want to try to extubate on Thursday. Katharine will be flying back on Friday. Thank you again for all the love you are sending and pray for a smooth extubation on Thursday. Have a wonderful day and take care everyone.