Another Call... Another Code...

Hi everyone,

This week was overall a really good week. Thursday was the best day she's had in a while! The unit has been extremely busy and having Ella really stable on Thursday seemed to be a big help to the doctors. Each day has been really full with rounds, wound care, trach care, baths, etc.

On Friday afternoon I drove home! It was my first night sleeping in my bed since July 23rd. That was 46 days! Matt worked the next morning while Eli and I played at home. Then we went to pick up a car that we are borrowing from friends from church (thank you!) so that I could stay home with Eli and Matt could drive down to Sacramento to be with Ella. Funny story about that... Our pastor texted me the other day, checking in on us and asking if there was any thing we needed. I told him that the one car situation has been hard and we are waiting to get our old car (that broke down a while ago) in to get checked out. He texted and asked if we would like a loaner car. I got busy taking care of Ella and I didn't respond for a bit and the next time I checked my phone he had texted saying that he has a car for us to borrow! It's amazing how God has continually provided for us.

Saturday was a really good day for Ella too until that night. Matt left the hospital to get dinner around 8:15pm and I got a call at 8:40pm explaining that Ella had coded (meaning she had to receive CPR) and they were talking about putting her back on ECMO. What?! ECMO again?! My mind was racing. I had just gotten a picture from Matt of some beautiful numbers of her sats and heart rates/pressures. How could this have happened so fast?! I had just gotten Eli in bed and was starting to read him a book when I received the call. I called Matt as soon as I hung up and he didn't answer. I called again and he picked up to my voice shaking then I broke down crying. All of the guilt of not being there that day rushed over me and I was regretting my decision to stay home instead of going to the hospital. Saturday would've been the first day that I had not been to the hospital since the day before Ella was born five months ago... apparently Ella wasn't a big fan that she didn't see me that day and knew how to get me down to Sac. After telling Matt all that I knew, we hung up and I rushed to get Eli and I together to hit the road. I was really proud of myself for remembering everything that we needed (minus Eli's toothbrush). I loaded Eli and a couple of our things in the car and left. 

I got another call seven minutes later from the hospital. This time the nurse explained that they had to do compressions on Ella for only three minutes and she started to recover so they weren't considering ECMO anymore. Phew! A peace fell over me, but I knew I needed to get down to Sac to see that she was OK with my own eyes. I called our parents multiple times and updated them all. I also called our friends that live next to us and asked if they would check that I didn't leave any thing on; I wasn't sure what I did after I received the call, I even had to double check to make sure I put pants on Eli later on our drive!  😂

Eli and I got to the hospital around 9:45pm and Ella looked good. Poor Dr. Tran (the PICU doctor)... He has had to be the one to give her compressions at least 2 of her 3 codes. He explained that during a breathing treatment, her gag reflex was triggered causing her to bear down which changed the pressures in her heart which made her heart rate drastically drop along with her sats. They added a ton of pain and sedation meds to help calm her. We left after a while of visiting with Ella and went to sleep at the Ronald McDonald House. Around 4am, we got another call. This time it was the doctor asking for our consent to give Ella a central line in her upper left thigh so they would have access to her for blood gases and to run medications through it. We of course agreed and thanked God that that was all the doctor needed.

The sound of my phone ringing triggers a scared response now. I hate it when it rings... It's almost like a PTSD response because I have received so many bad phone calls recently. It's weird how things like the sound of a phone can trigger your emotions.

Sunday was another stressful day that consisted of extremely low oxygen saturation levels while on 100% oxygen. We were told that if Ella needed to go back on ECMO, the doctors didn't recommend putting her through it again because it wasn't likely to be successful. Ella's nurse and respiratory therapist were constantly on and having to pay really close attention to her. They were trying to figure out what was going on, but there was no real evidence as to why she was satting so low while on 100% oxygen. They tried everything. They even put her on another kind of ventilator to see if that would help, but nothing seemed to... Later in the afternoon we did another xray of Ella's chest and realized her left lung had collapsed. This was probably the source of the low saturation levels. The doctors and nurses gave her blood, put her back on a heart med called milrinone, and changed her trach to a cuffed trach (to remove the air leak that she had with a non-cuffed trach, which offered more pressure to keep her lungs filled with air). As we left, everyone was giving us hugs and to all of us in the PICU that night, it seemed like Ella wouldn't make it to the next morning. I posted on social media a call for prayer and it was amazing how many people were praying for our girl. Matt and I felt an amazing peace fall on us as we said goodbye to Ella. We aren't totally sure of what helped her or if it was a mix of it all, but Ella seemed to be doing much better. God gave us such an overwhelming peace so we were able to get rest last night.

I had multiple nurses texting me last night and this morning to check in on Ella. Can you believe that? They are so amazing and love her so much. It is truly a gift. As much as I can relay to you all, it's hard to really convey what actually goes on in Ella's room day by day, but these nurses and doctors get it. We are so blessed to have them in our lives. The relationships that we've built here would have never been built had Ella not been sick. I am so thankful that God has brought each and every one of them into our lives. 💜 They've been a light in the darkness.

We woke up and came to the hospital and were greeted by beautiful oxygen saturation levels and a lower level of oxygen support. We couldn't believe it. The doctors and nurses will be weaning her off of the sedation and pain meds and started feeding her again.

Talk about a stressful weekend. Poor little girl... She has really been through the ringer. She has defied all odds once again and the hospital staff can't believe it. God is sustaining her and she is making an impact on the world and glorifying Him.

Matt and I still can't believe she is here with us. We have had to say goodbye to our daughter without knowing if we will ever see her again so many times now. It's a feeling that I cannot describe. It's pretty horrible, yet God's plan for her continues!

I am taking Eli to his first day of preschool tomorrow! So I will be going home late tonight and coming back to the hospital in the afternoon. I get really anxious when I'm not down near Ella because she seems to always call me back, but I am praying and trusting that God will watch over her, and if she does call me back, that's ok. She knows we will be right there for her.

Thank you to everyone who prayed for her and for our family last night. It's not only hard on Matt, Eli, and me, it's hard on our parents and siblings. Please keep them in your prayers too.

Love,
Jillian