Making Some Progress

The week continued it seemed like we were finally making some progress.  The doctors kept discussing how Adeline was holding steady, and the next step was to start weaning the oscillator.  The next step was getting her back on a conventional ventilator.  It was music to our ears!

Getting Back to Baseline

There were still plenty of goals to be working on to get Adeline back to her “baseline” and make some progress.  Every day, Infectious Disease doctors would be involved in rounds and discuss how they thought the TamiFlu was working.  Overall, they were happy with how Adeline was doing since she seemed to be stabilizing, so the ten-day medicine regime would probably be enough.  

Then there was the nutrition side of things.  Since Adeline was on lipids and TPN, some of the medications running through Adeline’s IV’s were not compatible with her IV nutrition.  Given that, she would have to add yet another IV into Adeline’s foot/leg area because she just wasn’t getting enough “food” to satisfy her sick, little body.  

There was the oscillator.  The doctors wanted to start weaning it and make some progress as soon as possible.  When a kid is on the oscillator, it means that they are very sick.  Hearing the word “wean” is exciting; she had to be getting better!  And, we were ready to get that machine out of Adeline’s room.  Not only was it loud, but it took up a lot of space and shook Adeline’s little body.

Next Steps

The day after learning about ECMO, the doctors wanted to look how Adeline’s heart was doing.  Afterall, it had been hit hard with the Influenza A and the recent heart surgery.  It was decided that it was time to do another ECHO to see just how Adeline’s heart was doing.  ECHO’s normally take a good 45-minutes to complete.  Luckily, Mayo is so quick with their reports, so we didn’t have to wait long to learn that Adeline’s heart function was looking pretty good, considering!  

Yay! Some good news for a change!

Next, Adeline was going to have some ultrasounds done.  The first one they did was to examine her brain to make sure it was looking satisfactory.  I am not sure why, but this is always a nerve-wracking exam for me.  Since so many things were not going our way, I just knew they were probably going to find something.  Thankfully, Adeline was cleared from the brain ultrasound! 

More Good News!

They also needed to check out Adeline’s leg.  There was a growing concern that Adeline had a blood clot in her leg as her pulse was growing weak in her foot.  After the ultrasound, Adeline was also cleared again – NO BLOOD CLOT!

We were slowly making progress and it just felt so good.

The Oscillator Wean

Getting rid of the oscillator was the biggest to-do over the next few days.  Having the oscillator gone would be so reassuring that Adeline was on track, and “home” was becoming more of a reality. Every day they would adjust the controls to wean Adeline.  

Discussions were happening; when Adeline would reach a certain level on the oscillator, we could try switching her to the conventional vent.  That oscillator and the labs became the center of my focus.  As they would wean the oscillator, they would check labs to see how Adeline was tolerating it.  When the labs looked reassuring, they would be able to wean a little.  

Adeline was slowly making progress; it was so exciting!  But I was also impatient because we were getting so close to being back on the conventional vent! After three days of weaning, the doctors were finally starting to feel confident that they would be able to switch Adeline the following day. 

The good news kept coming.

Progress!

To switch Adeline to the conventional ventilator and have the most success, they would have to start weaning the sedation.  As the sedation meds slowly wore off, Adeline started to open her eyes more.  It was so exciting to Adeline’s eyes again, to know she was still in there.  She was out of it, but she was there, with those beautiful big eyes.  

When we left on the third day of weaning Adeline off the oscillator, we were excited for the next day.  The doctors had tried switching Adeline, unsuccessfully, to the conventional vent on day two of the wean.  They felt after a dose of steroids and the sedation wean, Adeline would have better success.  

It was hard not do get our hopes up, so we did.  The doctors seemed pretty confident, so we did too.

Remember that ICU rollercoaster? Little did I know we were about to board it again.

Reflection

When I think back to these days, it seems like it was months long.  Days are long when you are feeling so stressed.  As much as wanted to stay with Adeline at night, we always went back to the Ronald McDonald House to get some rest.  I was exhausted every day and so hormonal from giving birth.  

The crazy part about being so exhausted is that I never really did much during the day.  It was just the stress from worrying about what the next lab test might show us.  

What if she would get worse?

What if we weren’t as close to the next step as they thought?

How long would we be here for yet?

I want to get home so I can enjoy my time with Adeline before I go back to work!

It was hard knowing I couldn’t help her.  The most I could do to help her was to also take care of myself.  But I wanted to take the illness on for her – be the one that was sick, the one who had just got heart surgery.  She was too little to be going through so much.  

The other thing I remember about during that time was rounds in the morning.  They could be hard to take in.  I remember countless times crying in the middle of doctors talking, sometimes in full-on sobs.  They were discussing things that were worthy of crying – what would we do next if things weren’t getting better?  These were difficult conversations to have, and I wanted to be strong.  But eventually, you break, and who wouldn’t?  I just kept telling myself:

Be strong. Be strong.  Don’t cry today…

You have got this.

I didn’t believe it.

Sometimes being strong means giving up the control and being vulnerable – and that is ok.

No one can prepare you for when your child is so sick.  And, when we felt like we were over the hump, we were so excited! We didn’t look back!  We needed to think positive as we were making progress, but God was ready to test our strength again…

~Jessi

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