Day 6: February 24, 2010

Hearing the resident report “Day 6 post-op” at rounds this morning was quite the wake-up call......what? I thought we were only supposed to be in the PICU for 2-3 days?  What happened to our original post-op plan?


William had another restful night, with only a few wakings.  Around 8:15am, the white coats approached our little corner of the PICU.  Dr. Savard frankly said, “Okay, we’re getting this tube out, he’s fine.”   At that point, William was the slightest bit awake, certainly not fully alert and his eyes still closed...just as they had been for the past 24 hours.

I was told to leave the room (of course, it was so early in the morning, that I was there alone still)...

gulp...

About 15 minutes later, a resident came to the hall to tell me William was doing well and I could return.

I came rushing in to find William being sat up, a little oxygen mask on him and with TWO less tubes: the intubation tube and the NG.  Woohoo!



 Within a minute, William started vomiting.  They deep suctioned him and he vomited again...and again...not pretty.  It was obvious his NG had been clogged for quite some time...he was full of gunk.

After about 25 minutes off the vent completely, they decided to start C-PAP support.  William was really straining to breathe, he had all the signs of breathing difficulty (flaring his chest and nostrils) and his heart rate was too high.

Once all settled with the C-PAP head gear, complete with a padded head piece, William was exhausted from all that labored breathing...and once again, he slept hard!


William was so exhausted, he slept through most chest PT sessions, that were done every hour.  He had a lot of chest congestion that desperately needed to be broken up and suctioned out.  Now without the trachea tube in place, the deep suctioning process was even more traumatic.



Whenever William began to wake up a bit, he was distressed. The hope was to discontinue C-PAP later that day so William could begin clear liquids (it has been 6 days since he ate anything).




If you remember the original expectations for William's surgery, he was going to be kept sedated and intubated for 2-3 days post-surgically and then transferred back to Sloan to begin therapy and for his final stretch of recuperation.  By day 6 now and just being extubated, we were all suffering from home-sickness.  Fred made plans to return home and spend some quality time with Nicholas, who we all desperately missed.  But first, he gave our little trooper one more kiss...




Although we never weighed William through the PICU time, his edema was certainly at its peak around this point.  He was H-U-G-E...







After 5 hours on C-PAP, William was still struggling to breathe.

William's coming back....

By this point, William's IV pain med had been discontinued a day and a half previously.  He was only receiving fentanyl through this epidural.  As the day went on, he was showing more signs of discomfort and started on Toradol.
His discomfort is obvious...

When Dr LaQuaglia came in the early evening, he said the plan was for William to be transferred back to Sloan the following day (Thursday).

William’s evening nurse, Mo was wonderful. With careful planning of all lines and tubes, she transferred William into Mommy’s arms, first time since last Friday. I have to say, it was incredibly overwhelming to be holding him and maintaining everything in its position....

but boy, did that hour with him feel so good!

  

(can we say there's one exhausted Momma!)

Now that he was extubated, William was introduced to the PICU speciality...the percussion bed.
Percussion Bed this is William...William, meet the Percussion Bed.

William says, "oooo, I LOVE it!

This night was also noteworthy in that William began running a low-grade fever, around 100.5.  With the elevated temperature came elevated heart rate and respirations...which in the PICU means lots of monitor alarmings....not a restful night.

Day 5 in PICU: February 23, 2010

William had the smoothest night yet in the PICU.  He seemed overall comfortable, with only a few wakings.  They tried turning the vent back to 10 breaths per minute but William's entitles (carbon dioxide) went up, indicating he was not tolerating the decrease in ventilator help.  It was then resumed at 12 breaths per minute and 35% oxygen.

8:30am brought morning rounds and our first experience with a new attending, Dr. Peter Savard.  We later nicknamed him "The Bald Eagle" (any idea what he looked like?) 

Dr. Savard interrupted the resident as she was reviewing William's history when she said "Day five post-op..."  He said, "Excuse me?  And why are we still intubated?  We need to get this moving....stop all sedative and systemic fentanyl, only use the epidural.  We need to get him awake and get this show going.  Enough already."

For days, we had been told that William would show readiness for extubation at his own pace.  They would notice breathing attempts on the vent and he would begin to tolerate longer periods with reduced support.  Dr. Savard's perspective was much more radical....and certainly anxiety-provoking for all of us.  My mouth was literally left hanging open with this new approach...the bald eagle swept away just as quickly as he had swept in barking this orders.

By 9am, the ativan and IV fentanyl were stopped, except the fentanyl epidural….and William was very happy to sleep! Go figure!!!

In this photo, you can see the bruising in his left groin area from the arterial-line disaster.  He had many bandaids too, covering other a-line attempts.  So sad.



His little wrist in a restraint...


William's heart rate remained elevated four full days later, averaging around 147 bpm at this point.  His body remained under a tremendous amount of stress, from fluid overload, medication effects and general traumatic shock.

11:00pm that night, we all joked that once again, William had dictated his course of treatment. After being taken off the sedatives and systemic pain meds over 14 hours previously, he decided to catch up on the sleep he’d had been lacking from the past 6 months. I was certainly quite the change from what we are used to with our sleepless William. Yup, William had remained asleep nearly the entire day, rather comfortably, I may add.



The four of us have been bedside waiting for him to wake up and show his displeasure with the tubes and arm restraints! We had a feeling he would be a little pissed when he finally woke. Because the hospital is staffed less over night, the team made arrangements to give William a short-acting sedative (propofol) at 1am to keep him sleeping through the night. In the morning, the medication would be stopped and we would move forward with extubation.

Day 4: William turns 9 months

Day 4 - a sun-filled room with William's vent set for 14 breaths per minute. He was making some breathing attempts, even up to an extra 4-5 breaths per minute... and other times completely dependent on the vent....progress none the less.



  To top if off, he was making a few more movements, showing signs of trying to wake, open his eyes and even rubbed his eyes and face.




At this point, William still required very frequent deep suctioning of his lungs through the breathing tube.  He'd require 85% oxygen after suctioning and time to rebound....it took a lot out of him and was still very difficult to watch, time and time again...

For the first time since surgery, William's labs looked much more stable and he did not require blood or albumin...but, he did need a couple potassium runs (the effects of receiving Lasix to reduce his fluid overload).

A dietitian came to discuss William’s feeding habits prior to surgery. I expressed concern that he had not eaten since before midnight on February 18.  She said she was going to investigate orders to start TPN.

TPN was indeed started that night.   A year later and still having William fully-dependent on TPN is certainly not what I would have foreseen last year on this first night.

~

~ a peak into these days ~

The PICU team knew William was not ready to be extubated...he was still requiring at least 12-14 breaths a minute by the vent and his oxygen saturations would start to drop over time when he was at lower vent settings.  As the day went on, he became more and more grabby and eventually needed to be placed in restraints. 

Here's one last picture of those out-stretched arms.



Our vascular ultrasound of William's left leg finally happened.....now that is was Monday (ugh!).  His foot still had a poor pulse and was cool to the touch.  In the end, the final report found decreased blood flow in William's SFA – superficial femoral artery, which supplies blood to the knee and foot. The report suggested this could have been from the a-line or from some type of stenosis/narrowing of the artery, perhaps congenital. In the afternoon, we finally heard from Dr. LaQuaglia’s fellow. He confirmed that the clot was definitely from the a-line. They wanted to keep an eye on it. William’s co-ags had been high and he was still too close following major surgery to consider a blood thinner.


Even changing William's diapers was a huge production.  One person had to support the tubes and wires, while another person did the dirty end of things.  William's scrotum was incredibly swollen....the skin looked like it could pop....it was literally painful to look at. 

Sorry William.... I know someday you will be so mad at me for sharing all these details!


~ Poppie with our little 9-month old (sleeping) warrior ~

We have MOVEMENT!

At 4:40am on February 22, I witnessed the most reassuring event of the previous 3 days....William stirred for the first time! 
He moved his arms and legs a bit....it was the best thing...

It only lasted a few short minutes and clearly tuckered William out instantly.  Before long, he was settled back down...with the beeps and sputtering of vent's humidifier filling the room...

 

Day 3 in PICU

Day 3 was a busy one.  It started off with what became the norm in the PICU - the daily chest x-ray at 4:30am.  After all the stress of the A-line, I was just settling to sleep before needing to leave the room for William's x-rays and another little baby in the suite.

Shortly after, the fellows came by to check on our little sleeping prince.  They reviewed William's blood pressure trends and planned to wean him off the dopamine.  By 6:15am, his BP was holding steady around the upper 80’s over 30’s....without dopamine.  One major accomplishment done.....check!



7am brought a beautiful sunrise and one of our favorite nurses, Char on duty.  As she was doing her initial exam, I noticed that William’s left foot was blue, almost purplish on the bottom. Knowing the arterial line had just been placed in his groin area of that leg same leg, we all became concerningly alarmed.  Both nurses covering the three beds in our PICU suite could not get a pulse and the left leg and it was obviously cold.

Char paged the attending STAT and after a whirlwind of chaos, that darn A-line (that was just placed at 3:30am) was removed at 8:30am...by the same attending who put it in just five hours previously. There was a lot of concern William's artery had clotted. They promptly called vascular surgery who came and said he thinks its just the femoral artery reacting to the arterial line. He didn’t think it was a clot and didn’t think William needed an ultrasound because his arteries are so small it is difficult to see on ultrasound.  The clearly irritated vascular resident also added, "Anyway, there are no vascular techs available today, since it's Sunday....maybe an ultrasound could be done tomorrow."

Anyone who knows me would know what to expect from my reaction to his nonsense response. I was clearly not happy with this answer, since a clot could be fatal or very serious, at minimum. I told nurse Char who went to her charge nurse and the attending. The attending resident came and apologized for the vascular doc and said she will ensure all is done that is needed. She had already called Dr. LaQuaglia’s cell phone and left a message for him to come in.

In the meantime, William received another blood transfusion, after his hemoglobin was at 7.  He also got an additional albumin infusion and needed a new IV for frequent lab draws and medication infusions.  This time around, it only took 4 stabs through William's terribly puffy skin to hit a good vein in his right foot.



By 10:00am, a hematologist came to examine William and give input about the cold leg.  She advised to give a blood thinner, to be most pro-active in preventing permanent damage from what she considered to be an obvious blood clot in his femoral artery.  Because William was still less than 48 hours post-op, she needed to review her recommendation with Dr. LaQuaglia.  In the meantime, we kept warm packs on William's lower leg and monitored him closely.

Around 2pm, Dr. LaQuaglia came in to see William. He examined him carefully and assured us that William’s leg will be just fine, saying "this is nothing....this is no big deal."  I have to say, my stress level seemed only to increase with this answer....given that William's foot was still cold, blue and pulseless.  Dr. LaQuaglia went on to explain that he wrote a paper on this exact thing.  All we could hope for was that this too shall pass...hopefully.

We were only on Day 3, but were really feeling the stress.  There was CONSTANT noise in William's PICU room.  There were two other severely ill babies sharing our suite....all on vents and monitors galore. The nurses were continuously hustling....and William was just constantly keeping everyone on their toes.

I remember going through the bag I had brought to Sloan on surgery day.  It had the clothes William wore the morning of surgery and some of his favorite toys. For a little stress relief, we gave Sophie, the squeaky giraffe a tour of William's room.

She enjoyed the view of the river...

and just had to kiss her sweetie William....

...and of course, they needed some cuddle time together.

That Sunday, we were blessed with a visit from Uncle Alan and Aunt Laureen who traveled from Connecticut to support us.  As they were ready to head out of town, they dropped Fred and I off at Ronald around 5pm.  We crashed.....and crashed hard.  I woke at 11pm in a complete panic.  I had that feeling of, 'where am I, what day is it.....what has just happened to me."  Yeah, it was called s-l-e-e-p....remember that novelty?

We received great news when we got back to William, Grammy and Poppie.  A pulse had finally been found in William's foot!  It was faint, but audible with the aid of a Doppler....thank god!

Later that night, they also weaned William's vent from 16 breaths per minute to 14...he was making some breathing attempts!

~ William and nurse Char ~

She was an awesome advocate & skilled nurse to have on our side through all the stress of the pulseless foot.  Definitely a nurse we will always remember...

PICU Day 2 - February 20, 2010

Saturday morning, we had a beautiful sunrise entering our PICU room, overlooking the East River and Roosevelt Island (pay no attention to the dirty windows).

The sunlight gave William a warm, beautiful glow.

As we've learned, each hospital's equipment is a little different.

 

We all took turns sleeping on the "couch."

Aunt Elaine and Uncle John came to check in on their little Godson.

By 5pm Saturday, we were feeling a little punchy out of sleep-deprivation.  We got in some much-needed giggles....that is, as long as you weren't the one sleeping (thanks for being a good sport, Daddy!)

You could still see the surgeon's markings to realign William's belly button after the thoracotomy.  The white bandage under his incision was supporting his left chest tube and he continued to be catheterized.

When Dr. LaQuaglia came for rounds at 8:30am he said William was doing everything as expected, or at least within the range of expectation following a major surgery. He required slightly more pain meds and sedation than may have been expected, but so far, all was going smoothly. The swelling of his body, which had been increasing steadily through the night, was expected following an involved surgery. He told us William would likely be on the ventilator until at least Monday or Tuesday.

Throughout Day 2, William’s swelling increased considerably.  He required two albumin infusions and a red blood cell transfusion.  Labs were drawn every 8-12 hours. 

William remained on dopamine to keep his blood pressure stabilized.   Apparently, the PICU had many serious cases in the unit that required the attending doctor's attention.  We had waited all day for Dr. Pon to become available to surgically place a new A-line in William. Around 9pm the fellow came to prep William and realized he need additional sedation medication to keep him calm during the procedure. The meds and attending finally arrived at 11pm. 

We were all asked to leave the room for the procedure. Due to William’s size and severe edema, the fellow and resident had trouble getting the line in.The four of us tried to wait patiently in the main waiting room, some of us even falling asleep out of pure exhaustion.  We got occasional updates from William’s nurse, but overall, the minutes seemed to pass with agony.  Around 3am, Fred and I were ready to throw a fit....we had been away from William for four hours to place an A-line....and his darn surgery to remove a massive tumor took only 9 hours!  On top of it all, I was getting increasingly concerned with the fact that William was under further sedation and loads of pain meds for all the poking and prodding of this procedure.  What complications would this all cause now?

The line was finally in place at 3:30am…it took 4 ½ hours to place the arterial line!  It was in place in William's left SFA (superficial femoral artery).

Settling in to NY Presbyterian Hospital PICU

As per the original plan, William was transferred to NY Presbyterian Hospital's PICU because of his critical status post-operatively.  Presbyterian is literally across the street from Sloan....and its a massive hospital....like two full city blocks long.  It has 2,272 beds (as compared to Upstate Hospital's 409 staffed beds), with 20 peds in the PICU.  The most severe of the most severe kids in NYC are brought to Presbyterian's PICU.

I knew the ambulance trip across the street was going to be brief....but I was not expecting they would take William out the front door of Sloan (the one we always use), put him in the ambulance, turn the lights on, make a big U-turn on York Avenue and pull into the ambulance bay at Presbyterian.

Simple as that...

Apparently William didn't care for all the gosling during the ambulance ride.  Fortunately, I was placed in the front seat of the ambulance so I couldn't see all that was happening in the back.  William ended up getting 3 rounds of sedation and pain meds during the brief ride...

William was kept on systemic fentanyl (2mck/kg)  for pain management and ativan for sedation, each every 3 hours. 

When we first arrived in the PICU, the transport team continued to work to stabilize William, under the direction of Dr. Steven Pon. At times, there were six people surrounding his bed....it was intense.  His nurse seemed rather flustered.  At one point, she broke out in nervous hives.  Once things settled down many hours later, she shared that she is a traveling nurse and just started at Presbyterian earlier that week.

Right away, William had difficulty maintaining good blood pressure – he was running too low (around low 60’s over mid 50’s).  Heart rate was often high (due to low BP)...in the 180-190’s.  As his numbers continued to worsen (reaching low 60's over 20-30's), he was started on dopamine around midnight.

Dopamine stabilized his BP and HR better, but before too long, it seemed as though his arterial line (in left wrist) was shot. They were hoping extra fluids would revive it, since after multiple boli of fluids, it would show some response on the monitors. They even tried pushing bicarbonate to stop arterial spasming, but all efforts could not save the original art-line.  They started scoping out an artery for a new A-line (which was needed to keep an accurate & continuous BP measurement), but all preliminary scouring was not looking good due to William's increasing puffiness...


William's thoracotomy incision went from the middle of his abdomen to the middle of his back, in a horseshoe-like shape.  Because of his sensitivity to adhesives and dressings, Dr. LaQuaglia internally sutured him and used a surgical glue on the outside.

full-dependency on the ventilator

As the wee hours of that first night went on, William continued to have problems with low CVP's (central venous pressure - the pressure of blood in the thoracic vena cava, near the right atrium of the heart. CVP reflects the amount of blood returning to the heart and the ability of the heart to pump the blood into the arterial system).  William was ranging between 3 and a high of 8.  They would push extra fluids and he'd react positively, but could never get over 8...docs wanted him around 12, or at least 10 as minimum.

 

That night, William required lots of chest suctioning through the trachea - yuck. He had two sets of chest x-rays to monitor any fluid build-up. His left lung had a chest tube – but there was concern of fluid accumulation on the right side. 

 

As I attempted to sleep with one eye open that first night in the PICU, the complexity and fragility of William's status quickly became obvious...

February 19, 2010 - Surgery Day

Had this post been written last year, surely it would be much different than what it is now, written a year following.  Even though a full year has passed, I remember the majority of this day like they are forever etched in my memory....the other portions are lost in a numb blur...

The five of us (Fred, my parents, William and I) walked the 6 blocks along 1st Avenue to MSKCC at 5:45am.  It was weird to see the city in its early morning preparations....there were many delivery trucks pulled up to stores, everyone's sidewalk bilco doors were open to access the business's underground storage, there was minimal traffic and overall a dramatically different feel than the normal city bustle.  It was also a frigid, windy morning. 

William was starting to loose all patience by this point, after his all nighter with Poppie, he was not only over-tired but rightfully hungry (he had not been fed in seven hours, literally the longest he had ever gone without feeding). During the walk, he looked up at me a few times....you could sense fear in his eyes. You could tell he just knew something different was about to happen.

 I felt numb emotionally and physically as I carried William up that street.  

It was like the world was happening in slow motion, even though we were all walking so fast, if only in an attempt to keep warm.

After his all-nighter, William was clearly over-tired and rightfully hungry.  He had not seen me since around 1am. 

The hospital was a ghost town but there were the appropriate staff at the Day Hospital where we were to first check in.  Right about then is when William just lost it.

He became completely inconsolable...in every aspect of the word.  He screamed his little head off and just would not stop.  He was incredibly tired and madly hungry....nothing else but to nurse and put himself to sleep was going to make him hungry by that point.

Honestly, it was one of the worst hours of my life.

 I had this hysterical baby, he was getting everyone around him upset and un-nerved, my chest was throbbing with his every cry and on top of it all, I knew I would have to turn him over for this life-threatening surgery...all I could think to myself was, "this is not how this is all supposed to be...this entire situation is just wrong...wrong..."

After an hour and a half of hysterics and everyone trying everything possible, William finally settled down around 7:30.  The little red maraca from that awesome toy store on Lex Ave saved the day!

 Thankfully, William settled down and we had a few nice minutes before we had to turn him over. He enjoyed banging his hand on the tv while Sesame Street was playing in the pre-surgery room.

Anesthesia came at 7:45am and gave William a strong sedative. It started to make him a little sleepy looking, but before making it to the OR area, he was already perking up some so they gave him an additional dose. Dr. LaQuaglia, the surgeon, took William from my arms and carried him in the OR.

I could barely get the words out, "Please take good care of him."

7:50 - William placed under general anesthesia for preliminary procedures, prepping, catherization, etc

9:10 – Dr. LaQuaglia’s surgery officially began

Our team of 6 anxiously sat in the surgery waiting area, keeping a close eye on the surgical concierge who rotated through the families to update on each patient's surgery. We received an update once every two hours.

Our first update was around 10am.  Everything was going well and as expected. No concerns.

At 11:30, Fred and I toured NY Presbyterian's PICU with Meredith, the Nueroblastoma team's social worker.  We saw where William would be transferred and a mini-tour of the amenities of one of the top hospitals in the country.

We arrived back to "Team William" anxious to share we missed the noon update from the OR. Word was, all was going well. Dr. LaQuaglia was in the upper chest area – where he decided to begin.

Around 1:30 I received call on my cell phone from surgical concierge saying she would down to meet with us in 15-20 minutes. We were all very nervous and anxiously awaiting every lab coat that came around the corner. 45 minutes later we went to the concierge desk to ask for Maureen (the concierge who had just called me...needless to say, we later nicknamed her, The Nutcase).   She was nowhere to be found - lovely.

Another 15 minutes of torturous waiting and I decided to call back the number that had called my cell.  I was so worried and sick to my stomach, I couldn't even talk.

Fred proceeded to have the most bizarre phone conversation with "The Nutcase".... all the while we could see her from across the room talking to him. She explained to us “hospital time…where 15 minutes really means 30 minutes or more…so there was no reason for us to worry.”

I guess Maureen has never been on the side as a patient's family member waiting while their loved one is in a major surgery, none the less a 9-month old's parent waiting while a major tumor was being removed....

Despite the near anxiety-attack we were going to be given bad news, all reports from the OR continued to be good, with everything going as expected. We were reminded by Maureen...and the concierge who took over coverage for the next shift....it was just going to be a long surgery, requiring a lot of time to slowly remove the tumor.... bit by it.

At 3:30, I checked the time and re-calculated William's time in surgery...8 hours down...and counting. Around 3:45, my cell rang. It was the OR nurse saying all was going well and they were beginning to close him up. The numbness came back as I processed what was being said to me. 

Suddenly, Dr. LaQuaglia got on the phone and said, “All is well. The tumor is out. We are closing him up. I will meet with you soon. Good-bye.”

Never have I ever had such a most wonderful one-sided conversation!

At 4:00 we headed up to the 6th floor and were brought to a surgical consultation room to meet with Dr. LaQuaglia when he was ready.  We waited....and waited.....and waited..... (again, on hospital time, I guess)

5:30 – We were informed the transport team arrived and were meeting with Dr. LaQuaglia.

A while later, Dr. LaQuaglia came to our packed little consultation room.  All six of us were crowded in there.  He looked exhausted and calmly share the news – everything went smoothly, he felt as though he was able to remove the entire tumor and everything that looked suspicious. He could not feel a mass or see any sign of disease in the liver – but took a wedge biopsy, as discussed.

(breathe, Mommy....continue to breathe)

Dr. LaQuaglia ended up removing many lymph nodes around the tumor area and also a grouping around the aorta. He decided it was not needed to put in an additional central line. William's blood loss was minimal.  He received two transfusions during surgery. William remained intubated on the ventilator, had a chest tube in the left lobe, a foley catheter and an NG tube to decompress and suction his stomach.

Through the conversation, I literally had to remind myself to breathe.  I could barely look at the doctor, none the less get a thought out.  At the end of the conversation, I tapped Fred.  He thanked Dr. LaQuaglia for all he had done for William. Dr. LaQuaglia just pointed upwards to the heavens, shook our hands and left.

Within minutes, Team William pulled out their phones and were texting the good news. I'll never forget the sight of the two grandmothers texting away....seriously, at that time, I was a texting minimalist and there they were!