Ripping the Bandaid Off

If you are Facebook friends with me or hubby, a lot of this will be a repeat for you.  It's time, though, for me to write a lot of it down - 'cuz there's a lot more I want to write down every single day now and if I do that, y'all will be 'huh?  What is she talking about'....

The day of my last post, H. visited the doctor to report some odd symptoms he'd been having.  Doc ordered a chest X-ray (good old fashioned!) and confirmed that something had moved his windpipe a bit. It was bent slightly.  A CT scan was ordered as the next step.

On Wednesday morning, H. texted his dad a picture of his neck - it showed a HUGE bulge on the left side.  By the time J. arrived home from his walk (he walked very fast back home as soon as he got the pic), it was still swollen - but 'flat' swollen vs. huge bulge swollen.  They made an appointment with the doctor for that afternoon.  Not our regular doc who was booked but a doctor available.  Thankfully, our regular doc was there and upon realizing H. was in the office, he personally saw him - and after seeing the picture of the swelling from earlier in the day, he sent H. to the ER.  "CT scan will be faster there" - since we were still waiting for insurance approval for the scan he'd ordered the day before.

Of course, ER's triage people and here was a pretty healthy 20 year old.  No fever.  No real 'pain' - other than odd 'tightness' in his neck.  We waited three plus hours to be seen.  But as soon as the CT scan was done, the wheels came flying off the bus and things moved pretty quickly.

H. has a mass in his chest.  The ER doc who came in said 'it is very large'.  She repeated it again slowly, looking straight at me (J. wasn't in the room).  They wanted to transport H. to a 'higher level of care' and because the mass was very near his airway - the mass is what was causing his windpipe to be moved - they wanted to intubate him.  Put a tube down his throat and have a machine breathe for him.  And they would transport him via 'CTT' which at the time, had no impact on me.  I figured ambulance.

The prep for all this took a long time and while we waited, H. grappled with the huge range of emotions anyone would grapple with upon learning the severity of the situation.  We did our best to explain to him what we knew; what we didn't know; and what the plan was.

We left the room for the intubation (I couldn't handle it.  No way).  Shortly before they started, they said 'the helicopter crew is here'.  Holy crap - the CTT crew was MediVac.  It was all so surreal.  The two nurses were awesome and once the intubation was done, we got to be in the room while they got him ready.  Once he was ready, J. and I headed home to grab stuff.  I followed the ambulance down Tracy Blvd. towards the airport - and when it came time for me to turn left to head to our house while the ambulance continued down south to the airport, it was the hardest thing I've ever done not to follow.

They airlifted H. to Doctors Hospital in Modesto.  When we got there, he was in the ER and they were awaiting a bed in ICU.

Hunter entered ER late evening on Wednesday and by midnight, he was in ICU.

ICU is a very scary place.  The only 'good' thing about it is all the rooms are private.  And unlike days of old where visits were limited to 10 minutes an hour, we were invited to be with him as much as we wanted.  His first nurse - David - came out to get us after they'd gotten H. settled in his room.  We spent the first night by his bed - watching him come in and out.  The nurses were amazed that he was still fighting through the meds.  They told us he didn't stay 'out' on the helicopter or in the ER....and they were now giving him max doses of everything and he was still in and out.

The night passed in a blur.  We never left - no sleep at all - and awaited what was next.

I wish I had written things down daily, but I didn't.  There were a lot of tests and doctors over the next day or two.   On Friday, they did a biopsy.  When the radiologist came out (it was a needle biopsy and those are performed by radiologists in a room with a CT machine), he said the mass is 'hard and rubbery'.  They got three good samples.  He said 'we are thinking lymphoma' and I said 'have you seen lymphoma before in a biopsy?'.  'Yes', he replied.  I said 'did this look like lymphoma to you?'.  'Yes, ma'am'.  I thanked him for answering my direct question with a direct answer.

We waited.  They had told us we couldn't expect the full report from the biopsy until a week later (!).  Friends had dropped off lunch for us and J. and I went out to a courtyard while they took H. back to his room.  Within 20 minutes, we got a call from our nurse - an oncologist was there to see us.  I think J. and I were both so impressed with the speed that they got an oncologist on board - while also being completely terrified at the same time.

The oncologist wanted to start H. on some medication to reduce the swelling in his neck (steroids) and also get him started on some meds to help prepare his body for chemo.  While the diagnosis wasn't confirmed, it was pretty clear to everyone that whatever it was, it was likely some type of cancer.

The weekend crept by - but by Saturday, H. was 'awake' off and on.  He was managing the vent very well - not fighting anymore - and they removed the restraints they used when he was trying to take the tube out.  He was able to write notes and use hand signals.

I can't go on with the story without commenting on the nurses who cared for him.  David, Michelle, Aydee, Julie & Chessie were his nurses during his stay and they were stellar.  All of them - absolutely stellar.  The thing that amazed me is:  they didn't just care for H.  They cared for all of us.  They were constantly checking in with me and J. - did we need anything? Brought us blankets that first night 'cuz we hadn't planned for how cold it was in the room. Offered coffee and water to us.  Checked in on all of us - and especially H., of course - regularly.  They were so in awe of H. .  As the weekend went by, he was able to be awake and up - even with the vent.  They had never had a patient conscious while on a vent.  Probably never will again.

The hardest part of telling this story today is that there's no way to adequately describe all the moments of watching those amazing nurses 'do their jobs'.  Every time we thanked them - and we thanked them a lot - their reply was 'I am just doing my job'.  But holy crap - I wish I could describe all the warmth and concern and caring they showed while just 'doing their job'.  H. bonded quickly with all of them - and as the weekend crept by, we had some moments of laughter - even in the midst of such chaos.  One example was:  my friends brought lunch again on Saturday - and when I was asking J. what he'd like to drink, he said 'Diet Coke'.  And H. - not missing a beat - gave us the bird with both hands!  So funny.  We told him 'maybe tomorrow - if you're off the vent, we can get you a Coke tomorrow'.  The nurses did their best to keep H. upbeat and positive.  They were just stellar.  Every single one of them.  His night nurse Julie - on his last night in ICU - took a pair of hospital pants and cut them off for custom made basketball shorts.

Along with the amazing nurses, we had a fleet of doctors.  Top count was 7, I think - as they brought in an infectious disease specialist (still hoping maybe it was some kind of infection) and others.  One of his doctors was his pulmonologist - lung specialist - Dr. Ortiz.

She did a bronchoscopy on H. on Saturday - to see how his airway was from the inside.  The concern had been the tumor might collapse and crush his airway.  But she wanted to see for herself.  She confirmed there was narrowing in his airway - but it was down a lot lower than his upper airway.  She consulted with a surgeon, an ENT and the hospitalist and pushed them to allow the vent to be removed.  As she said to me in the hallway 'protecting his upper airway isn't needed - because the narrowing is down lower'.  This sunk in slowly for me - and I asked her again later 'so what will happen if the tumor keeps growing?  It will narrow his airway further...and eventually?'.  She thought carefully for a moment and said 'well, there are places that do 'stents' to keep airways open - but it's really more palliative than treatment.  There isn't any treatment if the tumor doesn't stop growing'.

They agreed to remove the vent on Sunday morning and H. pretty much did it himself - one huge cough and it was out.  He was so happy - and I was so glad to see his sweet slightly smiling mouth.

On Monday, we had a confirmed diagnosis:  Hodgkin's lymphoma.  H. was moved out of ICU that night and on Tuesday, he had his first chemo in the hospital.  They started the meds at 5PM so he did fine during the night.

He came home Wednesday -

I'll have more on how it's going in my next post.  We are very glad he's home - in good spirits and doing well...all things considered.