A Long Time Coming, Part 1

Well, friends, I have been thinking about this post for over a week.  I wanted to share with everyone what was going on, but I also needed some time to think about all of this privately, and then to rehash the past few weeks with Jeremiah.  Tonight I feel like I can talk about this without crying, but you won't really know if I do.

The morning after my last post, I took Natalie to a song and story time at our town hall.  She had so much fun, and was a good sport about going straight home afterward.  We had to walk through the town park to get home, but I promised her that we would go home, do Isaac's treatment, and then we could all come back to the park.  Isaac had woken up before we left, but I had asked Jeremiah and our nurse to wait until we returned to do his breathing treatment.  Our nurse had him all ready for the treatment when we got back.  I walked past his crib to go wash my hands, and stopped to smile at him.  He grinned back with his bright blue eyes, as sweet and happy as can be.  I had picked out a bright blue t-shirt with a tricycle on it, and it looked so great on him.  He was definitely in the best spirits since his most recent hospitalization, and I couldn't wait to get him in his stroller and out to enjoy some fresh air and sunlight.

Natalie played with some toys while Jeremiah, our nurse Jessica, and I all geared up for Isaac's treatment.  I decided we should do a little nasal suctioning before doing his coughs- something we had always done until the last couple of days.  Isaac's nose had been bleeding a little due to all of the extra treatments and dry air, so we had been going easy on him.  Ugh, my heart is starting to race just thinking about what happened next.  I suctioned his nose, we started his cough assist (a reminder, this is a machine that forces a set volume of air into Isaac's lungs, then forces out a larger volume of air to mimic a cough).  With the first exhale, blood came spurting out of Isaac's nose.  The next several moments were a flurry of trying to suction blood from his nose and mouth, trying more coughs to get him to breath, trying the 'inhale' setting to force air and oxygen into his lungs.  Isaac's oxygen saturation dropped very quickly, down to 80%, 70%, 50%, and lower.  Our nurse, God bless her, calmly told Jeremiah that she needed him to call 911.  I grew semi-hysterical when I saw Isaac's face covered in blood, and I tried to wipe it off in between suctioning and coughing and breathing.  My first thought, and a recurring thought was once again "not like this, Lord, please not like this."  Please don't let our son die with his face covered in blood.  Jessica continued to calmly and firmly count the breaths she was giving Isaac, to help direct us, and to keep us as calm as possible.  I switched suction catheters, switched cough assist settings, and tried to keep up with the blood.  All the while, Isaac's oxygen levels kept dropping, 40%, 30%, back to 40%.  But his heart, his heart kept beating. And from underneath the noise of the suction and the cough assist, I could hear Isaac's occasional cries.  He was still breathing on his own, able to use his breath to trigger the cough assist.  But he turned blue, and then grey, and then white. Natalie climbed up on the chair next to our crib.  "Mommy, is Isaac sick again?"  Yes, sweetie. We kept talking to Isaac, telling him we were here and to keep fighting, that we could hear him crying, that we knew he was trying, that we were trying to help.  Mommy is here, Daddy is here.  "And sister is here, too," she piped in from her perch. The EMTs arrived, a different team than responded in July, so Jeremiah quickly oriented them to Isaac and his equipment.  Someone took over for Jessica holding the cough assist.  I called our neighbor, Virg, who came to take Natalie to her house.  Natalie knew the drill. The EMTs cut off Isaac's new blue t-shirt, they wanted to start an IV, we told them it wasn't worth their time, so they asked our permission to do an IO.  Our other nurse, Ele, had just been explaining those to me two days prior.  It's when they drill into the bone in order to place an IV.  We gave the go ahead, and out came the little drill.  Piece of cake.  I heard an EMT say that we didn't have time to get Isaac to Children's Hospital. I remember saying "I'm sorry, but that is the only place we will let you take him.  Get a helicopter if you have to."  Later I thought how silly it was that I started with "I'm sorry."  We started to get Isaac ready to transfer to the gurney, his oxygen was still barely 50% going on about 12 minutes now.  As soon as he was on the gurney and exactly halfway out the door, I saw his oxygen shoot back up to 91%.  I shouted to Isaac that he was amazing, I shouted to Jeremiah that it was up in the 90s.  It was a towel under his shoulder blades that had done it.  At that moment I felt calm, and I knew he was going to make it- at least for now.  Jeremiah and I ran partway down the street as the ambulance took Isaac one block away, to the baseball field at the elementary school.  I remember pausing in the street, not knowing if I should stay by the ambulance or run to the end of the road and meet it there.  In the end, I ran down, talked to Jessica about leaving right away for Children's so Isaac wouldn't be alone in the ER for very long, stopped to tell Virg what was happening, and running back to the house to gather a backpack of essentials.  I wanted Jeremiah to ride with me, thinking that the helicopter would be taking off any second.  But he was in the ambulance with Isaac, and I didn't know what was going on, so I just drove.

I ended up arriving at the hospital a full 30 minutes before Isaac did, and it's a 45 minute drive from our house (or maybe a 37 minute drive that day...).  The security guard in the emergency department was worried that I had come to the wrong hospital, or that the helicopter took Isaac somewhere else.  I frantically called Jeremiah, who explained that the chopper had just left and would be about 20 minutes.  Later, going over the events, Jeremiah told me that he and the EMTs spent another 20 minutes in the ambulance trying to get Isaac stable enough to fly.  His oxygen stayed up as long as someone was using the inhale setting on the cough assist.  This was a brand new setting for Isaac, one that Jeremiah had thought up about a week prior, and set up with the help of our pulmonologist the day before our last hospital discharge.  It basically turned his cough assist into an ambu bag, but one that no one has to squeeze over and over or worry about pressures.  That setting is what was keeping Isaac alive for at least 45 minutes, and thank God the battery held its charge.  I met Isaac in his room, and the nurse who led me to him assured me that he was stable, that he was doing fine.  I rushed to him, to reassure him, to kiss him, and to reassure myself. He was so mad, and scared, and looked just awful and exhausted.  The respiratory therapists were struggling to find a mask and headgear to fit him (Isaac's had been left at home, attached to his ventilator).  The third one they tried at least gave him a decent seal, but the headgear cut into his cheeks and the mask all but covered his top lip.  It looked incredibly uncomfortably, but at least he was breathing.  I reviewed the ventilator settings with the therapist so he would be on the correct mode (Passive PC AVAPs, tidal volume 160 cmH2O, EPAP 8, IPAP min and max of 32/20, increased due to respiratory distress, with a backup rate of 14, in case you were wondering). While we waited to transfer, I recited the Gruffalo.  Isaac locked his eyes on me, trying to block out everything else.  He even made a happy sound when he heard the voice of a nurse that he liked, and he looked around for her.  That was about as good as it got- the moment anyone else came near him he was all tears and crying again.  I don't blame him.  I can guarantee I have never felt as awful as he must have felt that day.

We transferred up to the PICU pretty quickly.  His CO2 levels were very high, but his chest x-ray still looked pretty good.  An amazing nurse named James Brown managed to place an IV, because the IO in his bone had come loose.  We were worried that it could have broken his leg, so they ordered an x-ray (it didn't break).  The medical team knew us and Isaac, and no one tried to tell me he would have to be NPO.  They ordered the right dextrose, they special ordered his formula, they notified his team, they gave him Tylenol without me having to ask for it.  They were so great. Within hours, Isaac's CO2 was coming back to normal, we had weaned him down to 3 liters from 15 liters of oxygen, and he was getting his formula along with extra fluids.  We talked with the pulmonary and respiratory team to come up with a plan.  How do we keep Isaac's airway and lungs clear without irritating his nasal passages and starting another bleed?  We took it one step at a time, one treatment at a time.  First step, let him sleep.