The Call in the Middle of the Night

The Call

Getting a phone call in the night is never a good thing when your kid is in the hospital.  I still remember that night like it was yesterday. The phone going off, looked at it, and swore because it was the hospital.  I answered it with trembling hands.  

The Intensivist started to explain what was going on; Adeline wasn’t doing well.  They were getting nervous that they were running out of time if they didn’t act.  Overnight, Adeline’s saturations were continuing to dip as well as her general condition.  She was still stable enough that they could get her to the OR and get her on ECMO.  If they didn’t do it now, they would have to risk doing it as an emergency, right in the room. That would be less than an ideal and would be very risky regarding infection.

I remember the Intensivist kept talking, but I couldn’t hear her. I told her we just needed to get off the phone with each other and we would head over.   Luckily, since we were staying at the Ronald McDonald house, we were not far away.  I just wanted to get to the hospital and maybe I would be able to process what she was saying to us.  Finally, I just had to cut her off and tell her we would be there withing 15 minutes, which is about what it would take to walk, or should I say run, there.  

When I got off the phone, Jeremy was already getting ready and I followed suit.  I was just crying.  How was it that less than 24 hours ago we were talking about switching her to a conventional ventilator? I thought she was getting better! 

Now, we were going to have to send our child off to be put on life support.  Since we were not in our best mindset, we knew there had to be someone to blame! Not?! This surely could not just happen! We were just out of our minds.

Getting to the Hospital

When we got to the hospital, we walked up to Adeline’s room.  All the lights were on, several nurses and doctors were in the room trying to get Adeline ready to go to the OR.  I just couldn’t think.  Just about that time, the surgeon, Dr. Dearani, walked in.  We looked at him in desperation and told him our feelings, all which were filled with fear.  

They were telling us the day before that she was getting better.  She was about ready to go back on the conventional ventilator! Was this an overreaction? Surely, she couldn’t be doing as poorly as they were saying she was!

Dr. Dearani went on to give us the pep-talk we needed.  He was understanding, yet also concerned with Adeline’s condition.  Putting Adeline on ECMO would allow Adeline’s heart and lungs to rest and get better.  This was what she desperately needed, her body to rest. She had just had heart surgery, the ileostomy, and then to add the flu on top of it.  We didn’t want to push her too far.  

After our talk with Dr. Dearani, we agreed that it was best to put Adeline on ECMO, no matter how scary that looked.  It was what her body needed if she was going to continue this fight.   

Scary, but the right decision.

We walked back to Adeline’s room as they finished preparing Adeline to go to surgery.  We just watched on from the hallway.  Finally, it was time for Adeline to go.  They called us in to say goodbye before she made the trip.  We understood it was possible that it could be the last time we would see Adeline.  We gave her kisses, told her to be strong and they rolled her away.

 

After Adeline Left For Surgery

We felt so helpless, and one of the nurses could tell the distress we were in.  She brought us back to one of the family rooms and talked to us a little.  She told us how things would work with updates and tried to reassure us.  At this point, we were so distraught we could hardly think.

The nurse left us alone to go get the room cleaned up and ready for the next shift.  We sat alone in the room, saying prayers repeatedly.  Finally, as we were starting to calm down a little and it was time for me to pump.

I got up to head to the pumping room…the tears that room has seen.  

As I was pumping, I decided to call my mom.  It was still a little early at this time, around 6 am, and I am sure I woke her up.  When I had her on the line, I broke down immediately and started crying.  I went on to tell her how Adeline was being put on life support because she was just getting too sick.  I could hardly talk I was crying so hard.  She started crying too.

I told her Adeline had went down to the OR and that I would let her know how Adeline was doing.  She said she would be praying that everything would go well and that this was the best decision for Adeline.  

I went back to the family room while we sat and waited.  Finally, we decided we would go back the Ronald McDonald House to just quickly freshen up since we knew it would still be awhile.  After getting back to the house, we decided to reach out to the rest of the family to let them know what was going on.  Even though everyone was very supportive, we told them to continue with their day and we would keep them updated.  

After quickly freshening up, we headed back to the hospital and the rest of the day was crazy.

Adeline did great in the OR; they had intervened right when they should have.  We were thankful for that.  The ECMO machine was large for our smaller ICU room.  And, the ECMO machine came with its own nurse to manage the machine.  So, the room got even smaller.  

The machine was a scary looking.  It had pints on pints of blood running through the lines.  It took close monitoring to be sure that blood wasn’t clotting on the lines, which could be a disaster if it were to break loose.  

The machine was what was keeping Adeline alive.  If that machine stopped or had a major problem, it could mean her life.  

The ECMO machine also meant constant lab work.  So much monitoring, it was crazy.  For the rest of the day, even though Adeline’s room was in isolation, we still had several doctors, nurses, and lab techs checking on her condition. 

It was such a long day.

Then, we went to meet with the surgeon to have a deep discussion about expectations of where Adeline was headed.  The thing we appreciated about Dr. Dearani was him being blunt.  He went on to tell us that Adeline was a ship in a hurricane.  She still had a way to go before she was out of it and he wasn’t sure what the other side would look like.  The damage her lungs had endured was quite severe.  There would be a good change that Adeline would end up needing a tracheostomy.  This was so scary to hear given we came in initially for something so different.  What would that mean for our life?!

What he told us shook us up a little, but it was what we needed to hear.  We knew what the possible outcomes were, and I always like to feel prepared. I was grateful to know what the possibilities were.

After a long day, it was time to head back to the Ronald McDonald House.  We were so exhausted, both mentally and physically.  We needed to try to rest so we would have the capability to process information when we needed to.  

Reflections

Hopefully this would be the last of the surprises from Adeline for a while.  It was getting too exhausting having one after another.  I just needed a break so I could gain knowledge as to what was going on and where we were potentially headed.  

What were we going to do? I was supposed to head back to work in a few weeks.  My goal was to just take the 8 weeks off, not the 12 that I received with the Family Medical Leave Act.  And, if Adeline needed a tracheostomy, how would that change things?  With a tracheostomy, Adeline would need 24-hour care.  

How long was Adeline going to need ECMO for? Dr. Dearani said it could be longer than we would have thought.  Hopefully, it wasn’t going to be the several weeks he warned us of.  And, even more so, hopefully recovery wouldn’t be as long as warned us it could be.  

Time would tell.  

Also, as we had more time to process, we forgave the situation at hand.  There was no one to blame, it was just happening the way it was supposed to.  Nothing anyone did or said could have changed things and we accepted that.  It is hard not to blame when you are in crisis mode.  But, blaming doesn’t fix it, it doesn’t change it, it just causes hard feelings and keeps you from moving forward.  I feel as though having the ability to look at the situation like that helped us heal and develop deeper relationships with the staff.  

~Jessi

Life in the ICU Continues…

Wednesday

While Adeline was in the ICU, it seemed as though she would take one step forward and two steps back. 

You would think that by this time, we were starting to grow conditioned to “waiting for the other shoe to drop.” But we hadn’t.

Adeline always seemed to do well during the day, and then she would have rough nights. When we had left the previous day, we were feeling so confident in how Adeline was doing.

The next day was going to be the day! And, then, it wasn’t. Overnight, Adeline’s saturations kept falling lower than they should be, into the 60’s. 

Before moving to the conventional ventilator, the doctors wanted to see Adeline improve a little more. 

Again, we, being as naive as we were, held out hope that she would improve. After all, she had been doing so well previously, why wouldn’t she improve through the day? Last night had to be a fluke, we knew it.  

After rounds, we paced the room, wondering what indicators the doctors needed to know that Adeline was ready to be switched ventilators. Finally, late morning, the Intensivist came by the Adeline and thought they would give it a shot. Thank goodness! We had such high hopes because they wouldn’t do it if they were not confident, right?

It was finally time to switch over to the conventional ventilator. The Intensivist, a Mid-Level, a Respiratory Therapist, and the nurse were all ready to go. Things were all ready to go. They switched Adeline and Jeremy and I just watched from the edge of the room. The Intensivist managed and talked with the Respiratory Therapist to figure out what they thought might be the right setting. They picked a target number and started adjusting from there.  

As they started adjusting, we couldn’t help but notice the concern in their voices.

“No, we better turn it up more.”

“No, better do a little more.”

“More.”

“Let’s give her a little time and see if she adjusts.”

That didn’t sound good, but at least they were going to give her some time. Indeed, she would catch up with the vent and do just fine. Keep in mind that Adeline was at the highest ventilator settings. The Intensivist ordered a lab, and we would let that determine how it was really working. 

It was finally time for them to do the lab. Jeremy and I waited in anticipation. This had to work, we just knew it! They drew the lab, and we impatiently waited.  

*Boom*

They put her back on the oscillator immediately.  

DAMNIT!!

My heart sank. The Intensivist talked about how her lungs were too stiff, also known as Acute Respiratory Distress Syndrome, to tolerate the standard vent. It took everything in me not to cry, but I had to give her time to heal. I held it together at the hospital and cried when we got back to our room at the Ronald McDonald House.

After all the anticipation, the rest of the day was quiet. They did another swab of Adeline’s breathing tube to see if the flu had resolved itself yet.  

She looked so pale and sick

Thursday

Jeremy had decided to go home for the day to try to get some work done; after all, they were heading into Spring planting time. He decided he would come back that night as he knew I was having a hard time with things. 

That day at the hospital was a quiet one. Adeline was still having some difficulties when the nurses would try to move and adjust her. They would have to call in a Respiratory Therapist and slowly and steadily move Adeline. 

Even though they were being so gentle, Adeline’s saturations would quickly drop and make everyone nervous. 

It was quite a chore to have to move her.  

It was quite a chore to have to move her.  

Waking up from sedation, she looked terrible

That day the doctors let us know that they still thought that Adeline was making progress. They still were feeling as though Adeline would be ready for the conventional ventilator the following day. When I decided to go “home” for the night, I felt very defeated but tried to keep my head up.

That night, around 4:30 AM, I got a phone call from the Intensivist that was doing the overnight. 

Phone calls in the middle of the night are never good. I could hardly answer it as I knew what they were calling to tell me was not good.

Adeline was dipping fast, too fast. They felt as though they had to get her on ECMO sooner rather than later. She was still stable enough to make it to the OR. If they wanted too much longer, they were more nervous about what the alternative would be.  

She wanted to know what we wanted to do?

~Jessi

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

The ICU Rollercoaster Continues

I remember hearing once that being in the ICU with your child is like being on a rollercoaster-they weren’t kidding.  

We had made it through the first day of Adeline’s official Influenza A diagnosis which I thought was rough.  The next day, the rollercoaster just continued to progress and get worse.

Adeline was one month old on this day, and she was going to celebrate in her own way.

Overnight, Adeline continued to decline.  The doctors were not happy with where her saturation numbers were, and her blood work didn’t look great either.  They were hoping that Adeline would soon hit her plateaued and things would start to get better.  But, as the day continued, they were losing hope and were talking about next steps.

Then, the next steps…I was not ready for it.  

The rollercoaster continues…

ECMO

The doctors came and talked to Jeremy and me about ECMO, a portable heart and lung bypass machine. ECMO stands for Extracorporeal Membrane Oxygenation and is essentially a type of life support.  The ECMO machine would give Adeline’s heart and lungs a break it needed to heal, but all I could think about was “life support.” 

Me, with no medical knowledge:

Life Support = Someone is clearly going to die.  We are just keeping them alive long enough to say goodbye. 

Little did I know at the time, that Mayo has a state of the art ECMO program.  They have had patients on ECMO longer than most facilities and do amazing things with it.  Adeline would be in good hands.

But, to a panicking parent (ME!), who just thought they were going to be here for a week, it kinda freaks them out…

The doctors talked just a little about ECMO and gave us a pamphlet to read.  The pamphlet talked about all the things we could expect, the risks, and the benefits.

DEATH. That was pretty much all I could get out of the pamphlet, although it contained much more meaningful information. 

I could hardly read the darn thing through my tears.  My baby was going to die; I just knew it.  Worse part yet, she was going to die from something completely unrelated to the heart!  How could this happen?  My baby was equivalent to perfect when I brought her here, and now, we are talking about life support!!!

The Day Continued 

The doctors continued to do lab tests on Adeline all day.  They had to monitor her closely so they didn’t back themselves into a corner and have a bigger emergency.  

Since these blood tests were being done so often, I would hear the doctors and nurses discussing the numbers and decided I need to get an education too.  Clearly, we weren’t going home anytime soon, and if I was going to continue to be on this rollercoaster, I needed to understand it better.

When the nurse got the next set of blood tests, I had the nurse start explaining the numbers to me.  Even thought I was not understanding everything he was trying to teach me, I at least started picking up what was good and what was bad.  I started watching a few of the numbers closely.  It was nice since the blood tests would also show up on my Mayo Clinic App so I could process them more slowly.  

After such an emotional day, wouldn’t you know it, her numbers were starting to look better by the end of the day!  Now, these were not stellar numbers, but, an improvement.  They were looking well enough that we thought that Adeline was on the up-and-up and she had broken through her plateau.   

Clearly, the doctors just needed to talk to us about ECMO, Adeline had heard it and it had scared her straight.    Things could only go up from here.

Ileostomy

Another reason things were looking up was Adeline had her first bowl movement through her ileostomy.  Her body was starting to wake up and function like it should.  Anyone who has ever had a major surgery knows the excitement of the first bowel movement!  

Since the bowel was waking up it was time to have an ostomy nurse come by to show everyone what we would have to do with the stoma and stool.  Prior to the bowl movement, we just kept gauze there to catch all the “flow” coming out, which was almost nothing.  Adeline was on a diet of lipids and TPN, which is IV nutrition.  

The ostomy nurse came by with all her baby ostomy supplies: an ostomy pouch/bag, putty, ostomy wafer and the starter kit.  I watched a little as the ostomy nurse explained to the nurses what had to be done. 

I was horrified.  

My poor little girl!  

How am I supposed to do this? 

Luckily, they said in six weeks they would be able to reattach Adeline.  

So, I won’t have to do this, at least for long.  

But I continued to watch on as much as I could.   Again, there was a reason I hadn’t gone into the medical field.  

Adeline got her ostomy bag!

Reflection 

I still remember sitting in the room staring out the window after they gave us the ECMO pamphlet. This really was a rollercoaster ride, one I wanted to get off.  I could hardly pull myself together, but I wanted to look as cool as a cucumber.  

I couldn’t get past the feeling of how we got here.  

How could this be happening? 

No one should have to go through this, yet other people are dealt more difficult situations all the time. 

Why couldn’t I just be more thankful that they hadn’t told us to call our families?  

They hadn’t given up hope yet, so why am I?

It was just so darn hard.  Nothing anyone says can make it better, either.  They try, as would I if I was them.  But it is just so damn hard, and you do not get it until you are in the situation.

Luckily, as the day ticked by, we felt more hopeful.  Maybe, Adeline was just scaring us to remind us she was still in charge.  

I was holding on to that hope, I couldn’t handle the ICU rollercoaster anymore.

~Jessi

To see Adeline’s journey from the beginning, start here.

Adeline Starts to Struggle

Wednesday

The next day when we got to the hospital, the nurse informed us that Adeline was a struggle overnight. 

Over the day, we had struggle and struggle. It was getting to the point that the doctors were running out of options, and they needed to start pulling out all stops.

Influenza A

Adeline had contracted Influenza A.  

What?

How?

When?

What?

Knowing this would obviously help the doctors treat Adeline. They could give her an intense course of Tamiflu and be optimistic it would help. Most of the time, a person would take Tamiflu for five days. The Infectious Disease Doctors felt strongly that Adeline needed to do at least seven days. The Influenza had appeared quickly in the culture, so they knew it was bad.

It was going to be a rough 24 hours as we waited for the Tamiflu to do its thing. Adeline was getting worse and worse. We all hoped the medicine would kick in quickly and start giving Adeline some relief.  

Adeline got a Belly Catheter placed to help drain a LOT of fluid.

Adeline Gets a Belly Catheter

Then, it was decided that Adeline would head down for a CT scan that morning. She was not in a very stable place, but steady enough, and they needed to look. They got Adeline ready to go, which given her status, was quite the task. They had Adeline prepared to go, and away she went. 

Luckily, the CT scan did not take long. 

The results from the scan were about as fast as the scan itself.

After Adeline got back, we learned nothing had shown up on the CT. They had anticipated that they would see a buildup of fluid somewhere on Adeline, but none was found. The next plan of attack was a bedside operation.

Within one hour, we had a Pediatric Surgeon in Adeline’s room preparing for a “quick” bedside procedure. 

The Surgeon was going to insert a belly catheter into Adeline’s side to help the fluid drain. We were able to watch as the Surgeon used an ultrasound machine to carefully insert the long, sharp catheter into Adeline’s side. After the Surgeon placed the catheter right where he wanted it, the fluid started draining fast.

Over the day, Adeline drained over 300 mL’s of fluid from her belly, with most of it being within the first hour. For a baby so small, that was such a large amount of fluid she was carrying on her body. 

After the fluid was mostly drained, Adeline looked much better, and the swelling in her belly went way down. At least one thing was looking up!

The Oscillator

The last significant event of the day was that they decided to put Adeline on the oscillator ventilator. As Adeline’s condition continued to struggle, the traditional ventilator wasn’t doing the job anymore. Adeline just needed more support than the typical vent could give her.  

An oscillator is a strange-looking machine. It looks very outdated, but it does the job, and it does it reasonably well. It was a tough machine to get used to. 

The oscillator is a very loud(it sounds quiet in this video) and sounded like a small little tractor engine running. The machine also took up a lot of space, so our room grew smaller than it already was. And, since Adeline was so little, it just shook her whole body.  

I have said this so often, but we never realized just how bad Adeline’s condition was becoming. 

I mean, people get the Flu all the time, they pull out of it too. Adeline would have to do the same; we just knew it. We took the situation seriously, but we didn’t, mainly because of our ignorance.  

Adeline was continuing to struggle, we just didn’t realize how bad it was.

Reflections

We didn’t know how to read the machines, tests, or even our baby yet. In essence, it was a blessing, not knowing how much she was struggling. We needed to rest at night, and if we had known what we do now, we would have been a wreck. Exhausted is not a good state of mind at the hospital.

To show how bad my ignorance was, every day, I would check the Mayo App to see if they had an x-ray scheduled. I didn’t want to harass the doctors, but I thought this would indicate how long we would still be in the hospital. Unfortunately, at the time, they had x-rays scheduled as far out as it could go.

When the doctors had mentioned the Adeline had to take the Tamiflu for seven days, all I could think, geez, we must be here seven more days?! I just can’t believe myself, thinking such foolish thoughts, but at the same time, I was scared. We were supposed to be going home, but here we were, stuck. Adeline just needed to get back on track so we could go home. 

And, I knew she would pop right back here shortly, I just knew it.  

But she didn’t. She just continued to get worse and struggle more and more, and it was scary. Even scarier because all I could focus on was crazy things-going home.

~Jessi

To start reading where this all began, start here.