Today was a rough day for Tina and me. Ella is doing ok at the moment, but we received a call this afternoon from the nurse practitioner requesting that we have a meeting with her, Dr. Kays, Dr. Drummond, and possibly a neurologist next Monday. This kind of request is not usually a good thing.

This suspicion was confirmed when she went into the details of why a meeting was scheduled. Ella’s CT scan revealed some concerns related to her central line (CVL), primarily the fact that it looks to be causing some occluding in her inferior vena cava (IVC). If you recall, Ella’s superior vena cava collapsed after coming off ECMO (SVC Syndrome), and the CT scan also showed that this is still the case.

The only reason our girl still has her central line is for her IV diuretics. This is why they want to switch her over to her getting all her meds via her G-Tube, so they can pull this line. Dr. Kays has ordered that they start trying this transition again tonight. Half of her diuretics will be given intravenously, and the other half through her G-Tube.

We hope that Ella tolerates this because this is one step closer to coming home. The next few days will be very telling.

Also, they’re planning on giving Ella an EEG on Monday morning to assess the pathways of how her brain is functioning. This, in combination with the MRI results should give a clearer picture of her brain and what she may be up against.

So we don’t know all the details, but we know there is going to be some heavy decisions in the coming days. The neonatologist has one perspective on what the next steps should be for Ella, while Dr. Kays maintains a different opinion. The purpose of the meeting on Monday is to openly discuss all the relevant factors related to Ella’s condition. Ultimately, it will require a decision on our part to move forward.

Please pray for wisdom and discernment during this time. We only want the best for Ella, as do the doctors and staff. Keep in mind that Ella has never been a text book case so there’s no hard and fast rules with how to approach her treatment. We trust that the Great Physician does know what’s best, and we desire to be obedient to what He puts on our hearts.

Psalm 32:8
I will instruct you and teach you in the way you should go;
I will counsel you and watch over you.

Psalm 16:7
I will praise the LORD, who counsels me;
even at night my heart instructs me.