Headed Home Part 5 - Belly Tap July 02 2015, 16 Comments

Monday, September 2, 2013 - He was stable and resting thanks to our medication friend named Chloral.  He hadn't opened his eyes in 2.5 days, but protested with moans, howls and other shreaks.  I held him today after he got the EEG leads off his and his hair washed for about 2 hrs…until my bladder was going to burst.  He was snuggled right up, so perfectly nuzzled with one arm tucked between my arm-pit and side.  I repeatedly ran my fingers through his thick, clean hair.  Clean hair is not a given in the PICU.  In fact, I often said he had the PICU stank:) 

I studied his face as we rocked.  "I love you, baby," I whispered.  I was so happy that he was resting.

I got him situated in his bed still asleep and seized the opportunity to sneak away for a quick bite at 6:30pm.  Per the usual, there was nothing really to get excited about.  It was Labor Day, so in the spirit of cook outs, I chose bbq chic and a baked potato.  I ate a few bites of the chicken until I tasted some gristle.  Ok... thaaaat's done.  I think there were maybe two other people in the whole place.  I threw my picked over dinner in the trash and decided to walk across the street to CVS.  I had a craving for some Flips and wanted a magazine for company.  I was missing Remy and Sander terribly, so I tried calling my mom who had them at her house, but her cell phone was jacked-up.  Or maybe it was just the connection, which was always less than ideal at NCH.  Grr.  I had enjoyed the time Justin and I spent together with Bryer earlier in the day, which was rare, but now I was lonely again. On the bright side, the warmth of outside felt nice and it was refreshing to stretch my legs.  

I was never gone long, so when I made it back to his room I found him still asleep with paci-in-mouth just as I left him.  Score.  

The nurse was giving report to the night nurse, a guy.  I didn't recognize him, but it's likely that he had Bryer at some point being his 6th admit to the PICU in 10 months.  I was glad to be there through the night, especially if I was unsure of the nurse.  While we typically had wonderful nurses, there were a few...

I was cold.  It was always so darn cold in those rooms.  I always thought I was prepared for it, but I wasn't.  The green sweatshirt I was wearing must have accidentally gotten put into the dryer by my loving mother and/or my very helpful and sweet cousin, Dawn, who has been an absolute God send.  Yep, the arms are now too short just like all my other long sleeve tops that get put into the dryer. Bummer. Stupid ape arms.

I figured I should try to sleep while he was content and resting as you never could predict what the night would bring, especially when the Chloral began to wear off.  The time between it wearing off and the next allotted dose could be upwards of 3 hours.  Which meant standing hunched over his bed patting, singing, reinserting paci or trying the rocking chair.  That's why one of us always stayed.  We couldn't imagine a nurse having the bandwidth to do what we would do during those hours.  Sedation and pain meds were a Catch-22. While it was wonderful to see him comfortable and resting, I knew what loomed ahead.  Withdrawl.  We had gone through it from multiple combos of meds many times before, and it was anything but easy.  

The next morning, with coffee in hand, I leaned into the door jam of the sliding glass for rounds.  The attending, Dr O'Brien, said she was not comfortable with the unexplained fever Bryer still had or how his belly was so tight and distended. He tested positive for enterovirus again, so basically we were on the third week which she said was unusual.  She wanted to make sure there was nothing else.  Blood cultures had been sent the day before, so they would be waiting for those.  She wanted an Infectious Disease consult and also ordered a Lumbar Puncture.  I asked if we could coordinate with Neuro because they had mentioned a LP to check specific neuro transmitters and I only wanted him stuck once.  Check, my two-cents of advocacy had been given.

I could see the question in her face.  She shook her head, "I'm just concerned since he's not acting right and hasn't opened his eyes.  I don't want to miss something."  The plan was to begin tracking belly girth and also start TPN (nutrition through IV) to allow for gut rest. This would allow for them to regulate his electrolytes which were out of whack.  They wanted to get some of the extra fluid off with lasix, but they would need to be watching BP closely because getting fluid off can cause lower BP as well.  If he can't keep his BP up then they might need to transfuse blood.  His chest X-ray looked hazy overall, but not a normal pattern of pneumonia…probably the extra fluid he is holding she explained.  They also scheduled a follow-up ultrasound of the clot in his leg and he continued on Lovenox to help break it up. The goal would be TPN for only 2-3 days.  They would continue Ativan and Chloral to keep him comfortable.  

It seemed like a good plan, and we followed it for the next couple of days.  However, despite even being on gut rest, his belly girth got bigger and bigger.

Bryer on September 4, 2013.  You can see the fluid retention.

Dr. Hungerford, a fellow, was on rotation and had been the face-to-face contact we had interacted with the most for the past several days.  He was a strawberry blonde with a scruffy beard to match. Justin and I both really liked him.  He always made himself available for our questions, and I could see that he cared.  He grew more concerned about Bryer's belly by Wednesday.  It was large and very tight.  It was decided they would take Bryer down to Interventional Radiology the following morning to get his belly tapped for fluid.  1) To relieve him and 2) To test the fluid for infection and/or determine its source.  Bryer had this procedure done before in December after he coded in the NICU (another happening I plan to write about) and his belly had began accumulating ascites (fluid).  It is a fairly routine and simple procedure, one that I wasn't nervous about. We decided my Mom would stay Wednesday overnight so I could be with the kids that evening and take Remy to school. Mom would accompany him down with Dr. Hungerford to his early morning procedure, and I would come straight down after I dropped off Remy.

I swiped my access card to the PICU doors upon arrival that Thursday morning. When I looked up, I saw Dr. Hungerford walking toward me with distinct purpose.  I continued toward him a step quicker. When we met, he swiftly pivoted and we continued in unison towards Bryer's room.  

"Bryer had more of a difficult time with the procedure than we anticipated.  We're not sure.  It could have been the extra sedation on board that contributed to his respiratory distress, but I don't think so as we were meticulous.  I went through how this procedure would go several times last night before I went to bed and on the way in this morning.  I think something else is going on.  His stats started falling on the table and we had to bag him.  He just got worse and we are intubating him now.  I am so sorry.  We were able to get the fluid that we wanted."

By now we were outside his door looking into a room of doctors and nurses.  My mom came to me.  Dr. Hungerford suggested we go sit in the waiting room while they got him stable.  

I was stunned.  It's not what I was expecting to walk into.  I called Justin, then text a handful of friends and family asking for prayer and we continued to wait.  After about an hour, someone came to get us and we made our way back to his room.

This might be crazy for some to hear, especially fellow parents to medically complex kiddos, but up to this point (230ish days at NCH), Bryer had never been on a ventilator.  He had threatened it MANY times, but had always somehow avoided.  So as I looked at him on the vent for the first time, I thought, "What now baby?"  It was September 5th.