God's Timing: BIG NEWS

"Lean on, trust, and be confident in Me with all your heart and mind."

This was the message in my devotion this morning. I stand amazed at how just when you need something the most, God is one step ahead of you putting everything into place. Just like this message I needed to see today, he perfectly orchestrated the events that have led up to this post.

We have known all of Everly's life that her pulmonary hypertension was balanced...

...until last week.

Whether the change occurred due to her ongoing fight with rhino then with the bacterial infection, her new medicines or even her age, the fact is that her balance has changed.

And with that change comes ramifications for Evelry's body and quality of life. We have already begun to see the changes: excessive sleepiness, irritability, excessive sweating, lack of energy, color changes, lack of interest in playing and interacting, basic personality changes.

Even when we returned home, she continued to exhibit these new behaviors, or rather lack of in some instances. It is unsettling for us to watch her now. Her bursts of personality are so fleeting now that we knew that action needed to be taken.

So...

Because her biggest issue is the Pulmonary Hypertension, we decided to contact the team at the Pulmonary Hypertension Clinic at the Children's Hospital at Eggleston in Atlanta. They were able to get us into their weekly clinic at the crack of dawn Wednesday. So, myself, my husband and my mom packed up Everly and ALL of her machines, meds, and assorted other accessories which may or may not have included a few headbands and left for GA at 5:00 p.m. Tuesday evening. We arrived at 2 a.m. to the hotel got her set up and settled in by 4 a.m. and up by 6 a.m. to go to the appointment.

We were in clinic all day Wednesday, complete with echo, EKG, blood work, x-ray, and a collaborative meeting with the PH team. We expected, honestly, for them to say the plan of action in Tampa is exactly what they would do; however, that wasn't quite how it played out. The cardiologist recommended at the end of our first meeting that she be admitted into the hospital right then for a heart cath today or tomorrow. To say we were shocked would be an understatement. We said we needed to stop and think about this given all the risks involved but also all this could mean for her. This is a big procedure for her and she would need to be intubated. Of course, the fear is being extubated or even worse during the procedure.

We took a break for lunch and to discuss everything before we committed. We had some pastoral support from our Pastor's wife at that time and just had a family huddle including input from my dad back in Tampa. It was decided and agreed upon by each of us that this was a God-given opportunity, one that we had prayed for and one that we knew was appointed by God. With the information gleaned from the heart cath, the surgeon can determine if closing her VSD would be possible. They are very concerned that the window of opportunity has been missed (typically 4-6 month range) but are optimistic to move forward to see. We have been very encouraged by the aggressiveness of the team and the care they have taken to put everything into place for us. They have spoken to us about an aggressive treatment plan, while scary, that should ensure Everly would be the best surgical candidate she could be in preparation for open heart surgery.

We met with them again in the afternoon and we agreed that we would admit this morning rather than last night because we really wanted to spend a quiet night with Everly. So, today we have been waiting for the "the call" that they have a bed ready for her. This place is packed to capacity! No open beds, rooms or the like here at all.

Part of me is scared because we are not with our "home team" but I know that if we don't follow through with this plan today, right now, we might not get this chance again for her.

I know that we are doing the right thing by her and that this all fell into place literally within 36 hours with no effort on my behalf other than getting her here. In that and in all the arrangements just "falling" into place, we know that today, at this time, it is God's timing. We will be obedient to Him and cast our fears which are MANY onto Him as well. Without our faith and our complete and utter trust in Him, we have nothing outside of empty hope.

At the VERY moment we received the phone call saying there was a bed available and to head over, the PH team nurse called and said that they were able to accommodate getting Everly onto the already full cath schedule for tomorrow. God's timing at its best!

So, friends and family, we ask that you go to bended knee for Everly and for us as we go through this together. Pray for positive results and for successful extubation quickly. Pray that the staff, doctors and her team will be wise in their decisions. Pray that she remains healthy while in the hospital. Pray that she is comfortable and is surrounded by love at al times. Pray for her please.

I have so much more to write and may later but for now we have to take Everly over and admit her. Such a hard thing to do.

With love and appreciation,

Crystal and Family

P.S. We, as everyone knows, were thrown another curveball last Friday with the Lasix overdose and subsequent overnight hospitalization. I don't plan to do an entire update on just this right now because of my lack of time, so I'll do the best I can now. The update since then: I went to the pharmacy Monday not knowing they were already aware because of the cardio's call to them Friday. They had filed an internal incident report and told me that a district pharmacy manager would contact me. On Monday afternoon, the actual pharmacist responsible phoned me and apologized and asked how Everly was doing. Today (Thursday) the district pharmacy manager did call me and told me that someone would follow up with me. So, that's where we are with that.