Elijah: baffling doctors since 2010

When Elijah was born in 2010, they had the cath lab and nicu standing by because they expected to take him to surgery immediately after birth. They reserved the largest room in the ICU post op because he was so young, they thought he would need extra machinery, including a prolonged time on the ecmo or heart/lung bypass machine.

Contrary to expectations, Elijah was discharged in 21 days. After his second surgery five months later, we were home in five days.

The cardiologist paid us a second visit this afternoon to discuss the results of the sonogram he ordered to take a closer look at the pleural effusions that are keeping us here. He and the nurses are surprised that his O2 sat stays consistently in the high 80s and sometimes 90s. He is up and all outward indications show that he is getting better. The sonogram showed very little fluid on the left side and less fluid on the right than he expected, based on the X-ray, so that is good news. Still, we need to see the amount of fluid actually decreasing before we can transition off IV meds. The doctor seemed surprised to see Elijah looking so good in all other areas in spite of the continued fluid accumulation.

As much as we are all tired of the hospital, we definitely want Elijah well enough that we will not run the risk of ending up back here after he is discharged, so we are doing what we can to help him understand what's going on, to take unpleasant oral meds quickly and move on. His negotiation skills have developed tremendously. It's too bad there are some things you just can't bargain away.

Today we took a walk outside to get some fresh air, vitamin D, and get a closer look at the fountain. Then Elijah ranked the three fountains we have discovered so far at Medical City Children's Hospital. The outside fountain is definitely his favorite. 

We were invited to the first birthday party of twins who were born conjoined and have been treated here. It was quite the event with media and lots of hospital staff attending. All the pediatric patients were invited as well. Elijah scored balloons, cake, punch, and live savers candy. It was fun, and a reminder that I will take my own hard challenges any day rather than trade with someone else.