Jack's Story

Jack’s Story

We arrived back from Annapolis Sunday evening. When we got home, Jack came down to the kitchen for dessert and giggled about having trouble getting her words out. The kids hadn’t gotten much sleep the night before and we told her to shut down her phone, forgo a few episodes of One Tree Hill and go to bed.

Brian and I were pooped and he had an early flight to San Diego so we went to bed around 10. Around 12:35, Jack texted me to say she can’t speak properly and it was scaring her. 

She didn’t wake me up. 

Since we were still on Spring Break, her and her friend group had planned a fun day at the beach on Monday. She woke up and convinced me she was ok to go. 

10:30 - I dropped her at a friends house with a yogurt and told her to call me if she wasn’t feeling well.

11:24 am - I saw a text message pop up on my computer from Jack. I was mid-zoom call and didn’t read what it said as it came in. When I looked back later, ‘mommy my head hurts bad and I feel weird. Can you come get me.’

A few seconds after the text, my phone rang. I grabbed the call and she tried to tell me she wanted me to pick her up but couldn’t get the right words out to explain exactly where she was. I grabbed my keys, wallet and water bottle and jumped int he car. (Sorry for all the stop signs I blew through that day)

I kept her on the phone.

“Where are your friends?”

“I left”, she said.

“I don’t want you by yourself, can you go back to them.”

“No, it’s fine.”

“How far are they from where you are?”

“Just come.”

“I’m coming baby.”

As I was taking to her, I pulled up Life360 and found her exact location.

Just hearing her voice, I knew it wasn’t just a headache and exhaustion. 

I scooped her up and when she got in the car I could see how upset and scared she was. Her right hand and arm were trembling. I fumbled to text Brian telling him I was taking her right to St. Francis, our local heart hospital, thankfully just minutes away. 

She asked if we could stop at a friends to use the bathroom but something told me to just get her to the ER.

11:47 am - I pulled up at the ER Valet and walked her inside quickly trying not to show her how fucking freaked out I was. 

Within seconds, she was checked in and seated in a wheelchair being questioned by multiple nurses while I was handing over insurance cards, filling out paperwork and looking over at her through the corner of my eye. 

They ruled out a heart issue as they wheeled her back and tried to remove her bathing suit. Of course, all she wanted was to make sure of was that I wasn’t in the room when she was changing. 

They got her onto a stretcher, asking more questions, while drawing blood and wheeling her into the MRI room. I could see the fear in her eyes. I just kept looking over, squeezing her hand and telling her ‘it’s ok.’ 

12:12 - They asked me to remove all of her jewelry and then shooed me out of the MRI room. I went over to a chair in the corner - the same chairs I sat in two years earlier when Brian had his MRI on his back, and sat down… my own hands shaking and I responded to Brian who was texting me from his flight somewhere over the middle of the US in his way to San Diego.  

12:15 - Three minutes later - although it felt like an eternity - the doctor came out and said, ‘there is a large mass of blood in her brain’. 

WHAT???? 

My heart literally stopped.

He might have started explaining more at this point but I don’t think I heard anything coming out of his mouth other than 

‘we are looking to see where it’s coming from. I’ll know more in a few minutes’

The cell service in the hospital sucked. 

I was holding Jackson’s phone and looked to see if her service was better than mind. 

I texted Brian. I could hardly type the words, my hands were trembling.

Marley and her friend were on Spring Break with Darin in San Diego and were scheduled to fly back today.

I called Darin to fill him in. I could hardly control my shaking voice while telling him what was happening. 

He started to lose it, as any parent would being so far away and not know what was happening. 

I told him to keep his shit together for Marley. 

I can’t imagine the feeling of being so far away. 

Brian being en route to California or Darin being miles away and not being able to do anything in that moment. 

All I knew was that this was in my hands and I had no choice but to try and keep my shit together.

It all happened so fast. 

A few minutes later they told me they needed to get us over to Cohen’s Children’s Medical Center to meet with a Neurosurgeon and his team who would be waiting for us when we got there. 

The transport team arrived. 

They hooked her up to a heart monitor and oxygen.

The doctor began to explain to Jack what was going on. 

She nodded and said she understood. 

I waited in the corner of the room, filling out more paperwork and talking to nurses. 

“Are you ok, mom?”, they would ask.

“Yeah, I’m ok.”

The CD with the pics of her brain hadn’t finished copying but they didn’t want to waste another minute. The doctor briefed the team as we headed down the hall and out to the ambulance loading area.

12:37 - We were loaded into an ambulance heading to Cohen’s. Darin booked himself and Jess on Marley’s flight home. Brian was still en route to San Diego texting Delta to get on their flight and come right back to NY departing San Diego at 1:40pm pst arriving in JFK at 10:15pm. 10 hours from now! UGH

1:00ish - When we arrived at Cohen’s, the entire Neuro team was waiting for us. They quickly examined Jackson:

Can you tell me your name? She answered ‘Jackson’.

Do you know where you are? She nodded but couldn’t say ‘hospital’. 

Do you know what month it is? She nodded but couldn’t say April. 

Do you understand what’s going on? She nodded. 

Can you squeeze my hands?

Can you lift your left leg? 

Can push up against my hands? 

Then the right?

Can you follow the my finger?

Little did I know, these questions would be asked of Jackson as least 40 more times over the next 7 days. 

They looked at her films from St. Francis and Dr. Mittler gave me the news:

“Jackson has something called an Artereovienous Malformation. A rubber band ball inside her brain of veins and arteries. Inside this AVM, Jackson had a rupture, basically a brain aneurysm. That’s the mass of blood we are seeing in her scan. They way this is treated is that we need to stop the bleeding with something called an Endovascular Embolization. They will go in through the leg by her groin and up to her brain with a camera to find the bleed. Once they find it, they will try to inject a glue-like substance to stop the bleeding. However, we can’t do the procedure here at this hospital; she needs to go to North Shore hospital. Dr. Link will be doing the procedure and I’ll be there to watch and monitor what’s going on. After they are done, she will come back to Cohen’s where we will put her into an MRI and see how her brain is responding. If need be, we will have an OR ready, in case we need to operate.” 

All I could say was ‘ok’. 

My phone was buzzing with messages from Brian and Darin asking for updates. 

2:20 pm - Paul, our nurse from St. Francis, along with a new transport team loaded us back onto the ambulance which took us over to North Shore for the Angiogram with Dr. Link. On the ride over, Jack asked for her phone. I looked over at Paul and he said ‘just let her have it - whatever will make her happy right now’. 

2:30 pm - Pretty sure she started snapping pics to her friends and her story of herself inside an ambulance. I texted Brian and Darin with the update. Brian was on text with our friend who is a brain surgeon asking me for names of who I met and who is doing what. At this point, there was no choice of doctors, we got who we got and thankfully, we got the best of the best. 

3:07 pm - We arrived at North Shore, I signed all of the papers for anesthesia and met the team - who seemed to be there waiting and ready for our arrival. There were so many of them. They went through the question test and the results were the same as earlier. Jack got up to go to the bathroom for a urine sample and came back from forgetting to pee in the cup.  

“Opps.” That was her last Jackson smile before heading into her surgery.  

I asked the docs how long they thought it would take and they said it should be about 90 minutes. 

They wheeled her in a little after 3pm. 

I went into the surgical waiting room and wasn’t sure what the hell to do with myself. I started to pray. I knew my prayers were not enough so I went onto Facebook and wrote: 

“When you need every single person you know to pray for your baby, I guess this is where you go. Please pray for Jackson. Don’t just think about her - tell her ‘she’s got this’.” 

I couldn’t sit in this room. The transport team was in there to keep me company but I needed to move. 

I headed to the cafeteria to get something to eat as I had not taken a bite of food all day and was feeling light headed and sick to my stomach at the same time.

I loaded 8 sliced hard boiled eggs into a bowl and grabbed a bottle of water. I sat down and started to cry. 

I called my brother - it was his birthday. 

I filled him in.

Friends were texting and calling and asking what was going on. I couldn’t answer most of them.

Brian had messaged some our friends, our old nanny and Seb and gave them instructions.

I headed but up to the IR waiting room.

Seb arrived to sit with me. 

Jeanne Jeanne arrived - a mess of tears and I told her she’s not allowed to lose it. We have to hold it together.

Liz showed up with snacks and water. 

Chico arrived.

This was our crew for the next 8 hours. 

At the 90 minute mark there was no sign of a doctor. 

I was in the hallway on the phone when Dr. Mittler came out to give me an update. 

“It’s complicated.”

I looked at him blankly.

He continued, “the way the arteries and veins are entangled, it’s hard to see where the bleed is coming from. They go in and embolize and then come back out to see if the blended has stopped. If not, they go in another way and do the same. They’ve done this a number of times. If we keep going, we risk giving her a stroke so we need to stop for now and let her brain rest. They are going to stitch her up, keep her intubated and we will bring her back to Cohen’s. When we get there, we will put her into the MRI and see how her brain is responding. We will have an operating room ready if we need it and the team is on call. I’m heading back over now, you’ll go in the ambulance with Jackson and I’ll see you there.”

I took a moment in the hallway to have my breakdown before going back in the room. 

Chico came out to check on me. I was a mess. 

We went back in to join the others. 

Dr. Link came in. 

I don’t know what he said but Chico asked a bunch of good questions. 

I told them I was going over to Cohens and they all demanded to meet me there. 

We waited for the transport team to pick me up in the hallway. 

The wheeled Jackson, breathing tube in her mouth, eyes taped shut. 

She didn’t look like herself. 

Tears poured out of my eyes. 

My baby. 

I don’t remember much of the ride over. 

They put me in the front seat so the medical team could monitor her in the back.

We arrived at Cohen’s and all I remember was a kid walking through the ambulance area and screaming loudly when the doors to the back opened. Jackson, although still under anesthesia began to wake up and they had to give her meds to calm put her back under. I wanted to kill that kid. 

They wheeled her in and right into the MRI room. 

They sat me on a chair in the hallway.

All I could hear was other kids screaming and crying in the other rooms.

I returned a call and then they came out to bring me up to the Operating Room floor.

Dr. Mittler met me there and Jackson, on her stretcher and still out, was also there.

He explained, “Her brain is swelling and has shifted. There is a lot of pressure building up and we need to remove her skull cap to let her brain expand. Blah blah blah - sign these papers and we will get started.” 

I signed through the tears as a nurse put her hand on my back and told me she’s in good hands. 

I went over to Jack, kissed her shoulder and whispered in her ear, ‘you got this baby, you got this.’

They wheeled her away. 

I plopped into a chair and tried to breathe.

The nurse came over and asked if anyone was here with me. 

I said I think they are. Where can I find them?

She sent me down to the lobby and told me that would be where Dr. Mittler would find me after.

I went down and there was my crew with two new additions:

Darra (my lifelong friend - pretty much my sister) and Rabbi Z.

I filled everyone in and went to the bathroom.

I lost my shit. Hysterical. 

And then something came over me. 

I stared at myself in the mirror and started to yell:

‘This is not your story Jack. This is not it. This is not how it ends. This IS your story. You will tell this story for yourself one day. This is not how it ends. You fight baby. You got this.’ 

I splashed water on my face and went back to the couches and my crew in the waiting area.

We sat, we talked. We sat some more.

Brian, Darin, Marley and crew landed.

Brian jumped in an über by himself and Darin and Marley got picked up and headed to Darin’s to get his car.

Brian finally arrived and the embrace and tears were endless. 

As we let go, Dr. Mittler emerged from the OR.

He approached the crew. 

I introduced him to Brian who was next to me taking some deep inhales and slow exhales. 

Dr. Mittler looked at Brian and said, ‘do you need to sit down?’ 

‘No, I’m good.’

He then said, ‘I’ve seen men bigger than you go down. Take a seat or I’m not going to continue.’

Brian sat down. 

He explained that they had to remove a large part of her skull cap to let out the pressure.

They implanted it in under a flap of skin in her belly to keep it sterile and safe. 

They will keep her sedated overnight.

There is a monitor inside her skull to measure pressure.

This is going to be a long night but it looked good.

They were able to remove a lot of the blood from her left frontal lobe.

They had no idea what she would be like when she woke up.

They were optimistic.

The next few days are critical. 

They are moving her to Pediatric Intensive Care Unit.

She will most likely be here for a while but we will know more when she wakes up.

He then told us that we should get some rest. Tired parents are not helpful.

There was no fucking way I was leaving or sleeping.

He said he would see us in the morning and he’s on call if he is needed.

He left.

A few minutes later Darin, Marley and Jess arrived. 

We started to fill them in and then Dr. Mittler came back out.

He explained it all again. 

We sat.

We cried.

We hugged each other.

We made a plan for the night. 

Brian and I would sleep there and keep an eye on Jack.

Sleep being a loose term.

We took turns going up to see Jack - only two allowed at a time. 

Darin and Jess went first. 

I took Marley up after trying to convince her not to see her sister like this.

She wanted to see her. 

She gave her a kiss.

We went back down and made a plan.

Brian and I went back up and settled in for the night.

I turned the chair into a bed and B took the recliner.

The nurses brought us blankets and pillows and then we sat there.

Holding hands. 

Staring at the brain pressure number to make sure it didn’t go higher than what we were told.

The beeping of all the machines.

Wires and tubes everywhere.

Nurses coming in and out. 

Sleep was not happening.

It was the longest, scariest night of my life.