Who would have thought that 15 years from saying “I do” would land you @ CHOC (when you normally live in Colorado) with a beautiful miracle girl that God has allowed you to borrow for a time?

Today is our 15 year wedding anniversary. And it has been such a big day for Ella too.

Starting at shift change last night, Ella was too awake. They kept increasing the Propofol from 75 to 85, then 95, then 100. The 100 mics per kilo is the max amount for her weight. All of this over 30 minutes. Then, we tried a dose of Benadryl which has worked successfully so far. We waited twenty minutes, she was still awake. They called in the doc to double the fentanyl drip. Nothing was working to make Ella sedated enough. Even though they were pumping lots of drugs into her system, she was still fighting it. Under my breath, I’m thinking that is one of the reasons Ella has made it so far: she’s such a fighter.

Finally, they called the doc in again and he recommended a one time dose of Vecuronium (Norcuron) to deal with Ella in this acute state and get us through the night. Vecuronium is used as an adjunct to general anesthesia, to facilitate intubation and to provide muscle relaxation during surgery or mechanical ventilation. Although Vecuronium is often thought of as a muscle relaxant, it may be more accurate to classify it as a paralyzing agent. I was not real happy about giving her yet another drug, especially a paralytic agent as she is getting closer to be extubated, but I felt we were out of options.

Giving a paralytic agent reminded me of the NICU days. Not often, but more often that we wanted on some days, using a paralytic agent was the only way to manage Ella because she would fight things so much. The fact that she is continuing to build a tolerance to the sedation and waking up tells me that we need to do everything we can to get her off the vent.

While she was sedated and cooperating, she looked stable for a few hours so they drew a blood gas and then weaned the vent settings a little bit more to 14 breaths per minute around 3am. She has another blood gas at 6am and a chest xray. Her overall saturations, heart rate and blood gas will determine if she can take the next steps.

As I am every day and evening with the changes in staff, I was very specific with the nurse to wake me if there were any changes. About 4am, I awoke to beeps. They were suctioning her. I saw the nurse drawing up the Vecuronium in a vial getting ready to dispense again. I asked what was going on and was informed me that they were giving it again. With limited options in front of us, I may have opted for the same answer, but I would have liked to discuss with the doc on the downsides of giving this paralytic agent so close to her extubation. In other words, are we better to try more fentanyl or even give a bolus of versed? When was the next dose of Benadryl? Would that have been a better option? The Vecuronium held her for 4 hours, so it was probably a good call. I just got enraged over the principal: I specifically asked to be woken up with any changes or decisions regarding her care and I was not.

I went out to the charge nurse to voice my displeasure and make sure that we have a great nurse scheduled for the day shift since it is a big one for Ella. Once I calmed down enough back in the room, I went back to the room and confessed to the nurses that I was not happy. We had a nice talk about it. During our conversation they let me know that when Ella was waking again, they consulted the doc and found out that Vecuronium was ordered as needed for every hour. They admitted that they were under the impression that it was a one dose treatment as well. But they told me that they did try a bolus of fentanyl before I woke up and she did not respond. Once again, we had a clear discussion about waking me if they felt that she needed it again or they were planning to do anything different than normal maintenance and letting her current drips run. Once I was worked up, it took me a long time to be able to go back to sleep.

This morning, it became pretty apparent that it was time to extubate. Once the docs briefly took a look at her chest xray, which looked better, and watched her clinically, they started the process. They stopped the Propofol and the fentanyl. They took a blood gas which didn’t look great and she wasn’t responding to CPAP via the vent, but we think it is because she did not know what was going on with the tube in her throat and wanted it out! So, it was only about a 15 minute process and finally extubation at 8:40am! Ella did great – they did not need to bag her or put a mask on her face – which surprised them. They just took a blood gas and now she is doing better off the ventilator than on it! Praise God!

Now, the only challenge is her itchy rash on her chest area. Since she is more alert, she is itching herself and it is driving her crazy! This confirms what we thought the entire time: that she was itchy even through the sedation. We gave her Benadryl about 30 minutes ago. If that doesn’t work, they’ll need to start something else.

Otherwise, Ella is doing great on the nasal cannula with nitric oxide and 2 liters of O2. We’ll update later on this same page (remember, you will not get an email)!

I read this passage in my devotional a couple of months ago and shared it on the blog. For some reason, I felt prompted to share it again today. It must mean that someone out there reading about Ella’s story needs to be reminded of His love and His ways.

This is my doing (1 Kings 12:24).

The disappointments of life are simply hidden appointments of love.

My child, I have a message for you today. Let me whisper it in your ear so any storm clouds that may arise will shine with glory, and the rough places you may have to walk will be made smooth. It is only four words, but let them sink into your inner being, and use them as a pillow to rest your weary head. “This is my doing”.

Have you ever realized that whatever concerns you concerns me too? “For whatever touches you touches the apple of my eye” (Zech 2:8). “You are precious in my sight” (Isaiah 43:4). Therefore it is my special delight to teach you.

I want you to learn that when temptations attack you, and the enemy comes in “like a pent-up flood” (Isaiah 59:19), that “This is my doing” and that your weakness needs My strength, and your safety lies in letting Me fight for you.

Are you in difficult circumstances, surrounded by people who do not understand you, never ask your opinion, and always push you aside? “This is my doing”. I am the God of circumstances. You did not come to this place by accident – you are exactly where I meant for you to be.

Have you not asked Me to make you humble? Then see that I have placed you in the perfect school where this lesson is taught. Your circumstances and the people around you are only being used to accomplish My will.

Are you having problems with money, finding it hard to make ends meet? “This is my doing”, for I am the One who keeps your finances, and I want you to learn to depend upon Me. My supply is limitless and I “will meet all your needs” (Phil 4:19). I want to prove My promises so no one may say, “You did not trust in the LORD your God” (Deut 1:32).

Are you experiencing a time of sorrow? “This is my doing”. I am a “man of sorrows, and familiar with suffering” (Isaiah 53:3). I have allowed your earthly comforters to fail you, so that by turning to Me you may receive “eternal encouragement and good hope” (2 Thessalonians 2:16).

Have you longed to do some great work for Me but instead have been set aside on a bed of sickness and pain? “This is my doing”. You were so busy I could not get your attention, and I wanted to teach you some of My deepest truths. “They also serve who only stand and wait”. In fact, some of My greatest workers are those physically unable to serve, but who have learned to wield the powerful weapon of prayer.

Today I place a cup of holy oil in your hands. Use it freely, My child. Anoint it with every new circumstance, every word that hurts you, every interruption that makes you impatient, and every weakness you have. The pain will leave as soon as you learn to see Me in all things.

UPDATE 11:30 AM – By Josh
Well, we’re almost three hours after extubation and other than some major itchiness and a few withdrawal symptoms, Ella’s on the right path. We’re about to give her some Atarax to help with the itchiness and calm her a bit. Really though, we are all feeling relief. I think the pics below tell the story better than any words.

UPDATE 2:45 PM – By Josh
Ella is having some pretty strong withdrawal symptoms from the narcotics she’s been on for the last 4 days. She just scored an 11 on the Finnegan scale. For this reason they’re are going to put her on a low dose of Methadone. Hopefully this will ease her jitters and stop the waves of retching. We still get smiles, but we want the kiddo to be comfortable. Waiting on the dose from the pharmacy so we’ll see.

UPDATE 7:30 PM – By Tina
The initial dose of Methadone did not seem to have much effect. About an hour later, we had the doc examine her again. He went ahead and increased the dosage. The second time, she responded. We had about an hour of her still shaking a small amount, but not extreme. And she was very smiley, alert and responding like herself.

Around 7pm, she started acting agitated again. They just administered another dose of Methadone (which can be given every 6 hours) and I am waiting to see if it will calm her down again. Right now, she is resting in her bed and watching videos.

We are allowed to give the Atarax again. If she becomes agitated between now and the next dose of Methdone, we may try to see if that helps. It worked like magic the first time she took it! Plus, I do see her itching herself here and there and the red rash appears to becoming more prominent.

I’m having them order some aloe vera to put on her cheek and lips. When they extubated her this morning, they did not have orders to remove the NG tube initially. So, they retaped it to her face using a clear sticker. Her skin is so sensitive that when the nurse removed it later, it actually created little scabs on her face. Ouch!

We weighed Ella and she has lost 2.2 pounds since she was admitted last Thursday. We’re hoping that we can feed soon enough and start plumping her up again!

Thanks for all the prayer support. Ella did great today and we anticipate that she will progress forward well over the coming days. Please pray for sleep – for her and me – tonight in the PICU.