Friday, June 28, 2013

Gabriel's discharge!

Gabriel's feeling so good and ready to go that he thought he could help remove some more of his equipment or at least give it his very best effort.  Baby rodeo! Right hand trying to pull his pulse oximeter wire off his foot. Left hand grabbing both his nasal cannula (oxygen delivery) and one EKG (heart monitor) lead.
 Another view of the lad in action, intent on freeing himself.
 Busted! with one EKG lead displaced. These just stick right back so nothing as severe as pulling an RA line which Gabriel did after his first surgery, the Norwood procedure. The RA line is a right atrial line that enters the belly and then runs directly into the right atrium and should be pulled by surgeons not babies. Maybe he's just in training; a rodeo career is out but he could be the first HLHS surgeon?
Our time in 3 West (the cardiac convalescent ward) has been tiring and we're ready to depart. It has been wonderful to see some of the great staff again. This place is hard though and I commend all the nurses who work here. 3 West is always filled to capacity and this time there are an inordinate amount of parentless babies. One Nurse commented that every Nurse in the ward has a baby on her hip because there aren't any parents. The entire concept of 3 West is a partnership between nurses and parents, a transitional place focused on moving the child out of the hospital with significant  assistance from the parent(s). The staffing just isn't adequate when multiple children don't have parental support.  Gabriel's roommate is a doleful eyed baby who is Gabriel's age and was initially a chubby baby but is now underweight and simply not thriving. He's underwent cardiac surgery and also has some respiratory issues. He's too fragile for the nurses to pick up so he just lays in bed, the TV turned to the "calming nature sounds" channel and his mobile running non-stop. He starts to cough each cough exacerbating his respiratory distress causing each cough to subsequently increase in volume and hoarseness. On my shifts I've sat by Gabriel or lain on the couch beside him (attempting to nap) one or both of us awakened by his roommate. The nurses have multiple charges and can't always rush to his bedside and calm him, I lay there and wish the nurses would hurry. On Saturday the roommate's parents showed up and spent about an hour with their baby. The Dad held him a little while the Mother took some photos. They're an attractive mid-20's couple, he's dressed fashionably, she's just over the line on the trashy side. We find out later from the nurses this is about the average amount of time they spend with their baby per week. A couple of hours after they leave the roommate works himself up again. Beth opens his curtain and consoles him, talking to him sweetly and motherly. He calms and looks at her. She chats with him a little more.
"What are you doing?" I ask
"All he wants is a little attention. I go talk to him whenever he starts crying and the nurses are busy." Beth responds and adds "I wish I could do something for him, maybe I could buy a toy for him from the gift shop."
We both know though that a toy isn't what he needs.

On Sunday everything is looking good for discharge. We can't believe it, open heart surgery on Tuesday and discharge on Sunday!

 Gabriel contemplating all of the exciting things he's going to do after leaving the hospital.
At shift change one of our favorite Nurses, Michelle came on duty but she had another baby instead of Gabriel. We had bonded with her last time, one of those sincere, direct, genuine people that Beth and I are drawn to and relate with immediately. She saw we were being discharged so stopped by to say hello and see Gabriel. She scooped up Gabriel and nuzzled him, moving him with a rapid fluidity and cavalier expertise that I could tell made Beth a little uneasy. Michelle moves fast but with a competent grace, I felt calm but then again on the Swope side we might lean a bit toward the cavalier.

Powell and I left Albertson's Grocery store a few days ago and ran into Engine 2. It was in fact C-shift and I should have been on duty but my buddy Scotty was working for me. We bear hugged in the parking lot and caught up briefly all while Powell balance precariously on the shopping carpet return area bars. Powell balanced on one lower bar with the upper in between his thighs, swaying back and forth and catching himself at the last minute to recover to a neutral position and sway to the other side. While talking Scotty continued to shift himself and move into a catching position anticipating Powell's inability to right himself and subsequent impact with the asphalt. After his 3rd or forth reposition Scotty noticed my laissez-faire attitude regarding Powell and commented "You just have to let him do it, don't you?"
"He's got some awesome balance and if he takes it too far..." I said.  "He can't get awesome balance without falling sometimes."

Two weeks prior though, Gabriel's roommate had started his coughing cycle again and our joy at leaving and seeing Michelle was tempered by the baby's woeful, raspy cough. Michelle soothed him and angrily announced to nobody. I'm calling his parents! We overhead snippets of her end of the conversation (our room was just off the Nurses Station) and could tell she was being fed one excuse after the other. She adamantly requested the parents to come to the hospital telling them their baby needed parental comfort more than anything. We finally heard her state to another nurse after hanging up the phone. "They aren't coming, I think I woke them up." It was about noon.

 We stopped by the Nurses Station on our way out and said goodbye to all of Gabriel's wonderful care givers. Andrea was his Nurse of the day and has taken great care of him several times.
 Calling the elevator!
 Headed down.
 Dad performing an elevator monkey tribute to Bella and Powell. I initially tried to hook the right foot on the rail but quickly realized that if I was successful the consequences would be dire!
Almost out!!

 It's bittersweet leaving... We really, really want to leave. We want to take our baby home and get him as healthy as can be, but this place has been so significant in our lives. We have met so many wonderful, caring people who have saved Gabriel's life and affected our lives so immensely. We don't want to be here and won't miss this place so much as we'll miss this place's people!
 Gabriel relaxing on the walk back to the motorhome and dismissively commenting "Oh that, that was nothing. I'm good."
 As soon as I took this photo I thought "WOW! That is really poor context! " Baby stroller all alone with a bunch of RV's in a parking lot, maybe not the best thought out photo, but the composition...
 Back in the motorhome and ready to head for Half Moon Bay, our convalescent site away from convalescent ward!
Pure contentment, or exhaustion, or relief, or just home.

We have never been to an IKEA and have been too busy to stop by the one in Palo Alto. After discharge from LPCH, my wonderful Cousin Amaya met us at the parking lot and watched Gabriel in the motorhome while Beth and I explored the Swedish superstore!
I think discharge from hospital, freedom from baby, Scandinavian design, cool quirky stuff and a dinner of swedish meatballs all translated into absolute IKEA love for Beth.
I think she found our new kitchen (someday).
She had found reasonably priced attractive dressers on their website and wanted to check them out and perhaps buy one for Gabriel's room (soon to be built). The one downfall I found with IKEA is the construction quality of their furniture! Pressboard furniture with cam bolt fastener construction! I still shudder at the horror!
The swiveling plastic egg chairs with encompassing canopy though! It was like furniture designed with Powell in mind!
Beth then discovered the pantry storage display and fantasized about organizing the train wreck that is our breezeway.

Holy recycled materials bins!! We bought two of these.
And finished with a dinner of swedish meatballs. 

Amaya and Gabriel were doing well. We said goodbye to Amaya and IKEA and headed for Half Moon Bay.

We checked back into the same RV park at Pillar Point. While checking in the camp host asked why we were back. I was completely honest, she was very uncomfortable (babies and heart surgery should not be in the same conversation). She disappeared into her motorhome and came back with a CD The Sounds of Pillar Point (which they normally sell for 10.00) exclaiming "Here, you need to have this". It made her feel better, much like Beth wanting to buy a gift for Gabriel's roommate. We are social beings and want to do what we can to alleviate suffering, to help and when powerless to do anything else the one thing she could do was gift something. I understood and accepted.  The next day we hung out and decompressed. Beth became overwhelmed and spoke of her baby never being right. I got irritated with her and responded how fortunate we were to have him and he shouldn't even be alive. Things went downhill so I left the motorhome and rock hopped to the end of the jetty. Breathing hard I was content after physically exerting myself away from conflict and anger. I enjoyed the serenity that comes with sunlight reflecting off water. My physical activity has diminished with each child and almost completely halted when I started graduate school last fall. Until last fall I at least had hockey but a required seminar class conflicted with the weekly game.  I've got to prioritize physical fun stuff, I think I'll break the kayak out when I return home. Isabella's buddy at school is taking kayak lessons, I think if Bella, Powell and I all kayak it could be a good thing for the whole family. Daddy needs a physical outlet. Maybe we'll also get a 2 seater for Beth and Gabriel? It brought home what Beth was overwhelmed by. He will never be right. He will always be limited physically.

While home during our break between surgeries we rented the movie Chasing Mavericks shot in Santa Cruz and Half Moon Bay, just around the corner from where we were staying. Mavericks is the big wave surf spot of the west coast. The movie is about a young kid training his butt off so he can surf Mavericks with the few veteran surfers capable of handling the athletic endurance and strength required. Gabriel will never have an option to push himself physically to those levels. He'll be able to play and engage in sports but we've read of older HLHS kids that have to abandon sports when the game becomes more competitive in High School.  He never will be like other kids and will not have some opportunities but maybe that will just open new avenues we haven't even considered?

We left Half Moon Bay on Tuesday returning to LPCH as an outpatient for a final chest x-ray. He was cleared and the Nurse Practitioner told us he had set the record for discharge after the Glenn procedure! 5 days!

We walked back to the Stanford Mall parking lot, loaded up in the motorhome, waited for the lady in the Maserati to move and headed towards the land of potatoes.

It still seemed surreal, we new they were going to call us at any minute and say we needed to come back. This had happened too fast, this was the same duration we had spent last time just for catheterization!
 The farther away we drove the more real it became, heading past the cranes at the Port of Oakland we began to believe we were headed home!
 Beth and Gabriel were both overjoyed.

But that wore off so we turned on The Wiggles, we were introduced to them when Isabella was a baby. Powell wasn't interested in them at all but Gabriel is enraptured whenever they sing, maybe he'll be our very own Buckaroo Banzai (adventurer/surgeon/rockstar)!

A netflicks discovery last fall: Powell and I liked the movie, Isabella found it dreadful and Beth fell asleep.

The first day we drove to Reno and stopped at an RV park with perfectly manicured plastic grass. We parked beside Wolfgang and Ingrid a German couple in their 70's driving a rental RV on the backside of a 2 month tour of the west. After Gabriel fell asleep we had a glass of wine with them and they told us of their adventures. Wolfgang made periodic comments about humorous bumper stickers which I don't remember verbatim but dealt with being active and enjoying life and one about staying ahead of dementia. The comments seemed odd and not relevant, initially I chocked them up to a translation issue. By the end of the evening though we noticed Ingrid would ask the same question every 15 to 20 minutes. Wolfgang would calmly interject "You already asked that and they said..."

Driving through Winnemucca we had to snap a photo from the flip side of our view several weeks ago.  Wonder if two other people are sitting down to dinner and are watching us zip by at 75mph?

Friday, June 7, 2013

Post Glenn

I almost feel guilty about singling Manju out from all the rest of the nurses that have cared for Gabriel, they are all fantastic but Manju was the most perfect of the fantastics for Gabriel on that evening. A silver lining of this trip is getting to see many of the staff we became acquainted with a few months ago during Gabriel's Norwood procedure. It's been nice to see them and hear them exclaim with real joy about how big Gabriel is and how healthy he looks. I mentioned Manju's proficiency to one of the nurses who had looked after Gabriel for several nights in February, he remarked "Oh Manju is one of the best, when I can't figure something out I ask Manju." So maybe, I was justified in singling out one of the fantastics.  The next day Gabriel was doing much better and had slept through most of the night.

Gabriel was doing better but still getting hit with some serious pain killers every few hours. The nurses had created a kind of baby straight jacket and placed "no-no's" (splints) on his arms so he would not pull any of his lines out. If you've read many of the previous blogs Gabriel is a strong willed little guy that pulls whatever line he feels is uncomfortable (which is probably most of them).  The splints keep him from bending his arms and clawing at the cannula in his nose, the feeding tube in his nose or the lines which enter his abdomen and go straight to his heart.

 They did bring a pretty cool mobile that spun and had 4 different music settings; Bach, Mozart, Nature and Island. After some classical I flipped the switch to "Island" and disappointingly heard tropical birds  instead of the reggae I had hoped for.
A new nurse brought out mittens to replace the no-no's and baby blanket restraint system. I love the tropical themed mittens! 

 Still a bit of the restraint system as the mittens are not foolproof. Beth and I commute the 4 or so blocks and around the area on bicycles. After a couple of days I noticed her helmet and asked if drivers on the road had given her any extra consideration while she was riding. We both thought it a little too coincidental that the SPECIALIZED name would fail so perfectly inappropriately and determined Beth was probably collateral damage. On occasion I ride my bike to work at the Firehouse and must have grabbed Beth's helmet one day which one of my creative buddies couldn't resist manipulating.
The day after surgery Gabriel was urinary catheter and rectal thermometer free! The following day they removed the atrial line (IV) from his wrist, one of the IV's in his foot and his RA line.
 The RA line is an inter cardiac right atrial line (or for Gabriel's kind it could just be an A line as there is no right and left anymore), meaning an IV that goes through a hole in his belly and plugs directly into his heart. Accompanying the IV line are two pacing wires that also pierce his belly and attach to his heart. To remove the RA line the surgical fellow removed the dressing over the line and wires, clipped the suture that kept the line from moving and slowly extracted the line until it popped out of the small hole in Gabriel's belly. The CVICU was almost quiet while the Surgical Fellow was removing the RA line so I had a chance to chat with him and the Nurse. He is leaving LPCH after a 2 year pediatric cardiac surgical fellowship to become the junior attending surgeon in Portland. LPCH requires a 2 year adult cardiac surgical fellowship prior to the pediatric fellowship. All of this after he had completed a 5 1/2 year general surgical fellowship and because he completed medical school in India he only attended med. school for 5 1/2 years instead of 8 in the states. So 15 years of training just to begin his career! The sobering aspect of all this is that he was looking forward to leaving this area and moving somewhere more cost effective. This is not the first time we've heard a Dr comment on the high cost of everything in Palo Alto. The real estate market here is absurd, nice average bungalows sell for several million dollars. This is all generated by the Silicon Valley cash flow, the massive amounts of money dumped into the tech and dot coms and funneled to their engineers and share holders. The more I thought about it the more I thought how indicative this is of our values as a society. The Silicon Valley economy is really based on frivolous nothingness; Facebook is a means to chat, Google allows people to slightly more rapidly find what they're looking for by personally tailoring searches and advertising, Yahoo is similar, Wikipedia grants immediate somewhat reliable info. None of it is necessary or even significant. If serious research is required none of the above fits the bill, they are all just cursory sources, basically the virtual equivalent of the tabloid and gossip rack. This though is where our culture elects to dump massive quantities of our money and make multi-millionaires out of 20 somethings that can produce the next emoticon or virtual widget. The Doctors saving the lives of hundreds of children per year though (the cardiac case load alone runs 400-500 annually) can't afford to live in the same area. Don't get me wrong I'm not a curmudgeon begrudging a soft ware engineer's cute little piece of code. Maybe that yellow smiley face cheers up millions of people each day when they see it embedded in someones message. Beth and I also personally benefit from the connectivity and support which social media provides and appreciate staying in contact with all of our friends and family. I also love wikipedia and the cursory search engines which allow for rapid retrieval of almost anything and let me sneak nifty almost relevant tidbits and links into the blog. But... are they on par with saving a child's life?
 Gabriel had to be kept calm for the next hour allowing his heart to clot and not bleed excessively (at the point where the RA line had entered his heart). After that he was finally able to be placed in the best place possible, his Mother's arms. This made them both very happy.
 With the RA line removed and Gabriel doing well he was ready to move up to 3 West, the convalescent ward for cardiac kids. Gabriel missed the scenery outside the window as he vented his displeasure, probably thinking he was being wheeled to another traumatic occurrence.
 Finally in place in 3 west and double mittened he was able to take a nice long nap. While sleeping a   "Child Life Services" attendant poked her head in and asked if we needed anything. She returned with some toys, a mobile and a white noise machine.
After seeing the mittens on Gabriel though she told us she didn't really approve of either the mittens or no-no's and parents should be much better about  allowing their children to manipulate their fingers and that parents should interact with their children more, touching hands and allowing the child to explore. Beth and I listened with some level of incredulity as she chastised our parenting skills in a bubbly lilting  falsetto. A few descriptive terms filled my head which through a little self-control I kept to myself, little was needed as I felt little could be absorbed so I listened amused. As she clumsily connected the mobile to the hospital crib she grabbed the side rail and raised it briskly. The vertical lift bars objected loudly with a metal on metal screech (as they do on every crib we've encountered here). Gabriel's eyes shot open, immediately joined by an open mouth and a wailing cry. The digital zealot's eyes grew big and she stammered in shock "I'm so sorry, I didn't mean to..." Beth and I looked at her and didn't say anything and comforted our tactile neglected child; as the person who fit all the terms that had been buzzing through my head departed the room. 

Gabriel's next benchmark is removal of the chest tube. Last time he had two tubes, this time only one. The tube enters his chest cavity just below the rib cage and allows for drainage from the surgery. The tube can be removed when the 24 hour output of the tube does not exceed 2 cc's/kilo of body weight. For our chunky 6 kilo boy that magic number is 12 cc's or less. They monitor his drainage via a low tech fancy looking bucket.

 To date Gabriel has lost almost 120 cc's of blood and fluid, about 1/3 of a Coke (12oz. variety not the gargantuan gas station super guzzlers.) The talk is that possibly Friday (today) the tube could come out and along with it the pacing lines. After that the only thing left is for Gabriel to function well and receive a final chest x-ray and ECG. He is healing well and his pain is more manageable,  no morphine in the last 12 hours.  Less than 72 hours after open heart surgery and all he needs for pain is tylenol and motrine. Makes super whiners out of the rest of us!

Wednesday, June 5, 2013

Glenn Procedure

The Glenn procedure is the reason we are here. The first image I think shows the procedure quiet well and I love the Elsevier watermark behind the image. This is probably the most simplistic image I've found which displays the Superior Vena Cava (SVC) disconnected from the right atrium and reattached to the pulmonary artery, it is not altogether applicable to Gabriel's situation as this does not display what occurred during the Norwood procedure.

Awesome link to many other cardiac blogs. the author of the initial blog underwent the Glenn in 1967 a year I find particularly relevant as that is the year Gabriel's dear old Dad was born.

This image is much better at displaying what Gabriel's current cardiac situation is. First though, how our normal hearts work. Blood from the upper body enters the right atrium via the superior vena cava while blood from the lower body enters the right atrium via the inferior vena cava. The atria (right and left atrium) are basically temporary holding tanks that fill and then dump their contents into the ventricles (plural form in regular folk, singular in Gabriel type persons). So the venous or de-oxygenated blood fills the right atrium is dumped into the right ventricle and then pumped via the pulmonary artery (only artery which carries de-oxygentaed blood) into the lungs where the magic of blood gases crossing semi-permeable membranes in the alveoli occurs. The blood is then transported back to the heart via the pulmonary vein (not to be outdone by the pulmonary artery is the only vein in the body to carry oxygenated blood). The blood then fills the left atrium, collects, dumps into the left ventricle and is then pumped to the body entering the aortic arch and sent to where it should go feed cells routing through either the descending or ascending aorta.  Gabriel though is not of this form, his left ventricle doesn't count. So the Norwood consisted of re-plumbing his conduit to the rest of his body so the aorta was disconnected from his left ventricle and combined with his pulmonary artery (PA) and some cadaver tissue to feed his body. His atrial septum was also  removed which did away with atria and resulted in one singular atrium. The PA was now separate from the heart and receiving blood only via a shunt which carried blood directly from his left ventricle to his PA. The Glenn now  connects his SVC (disconnected from his right atrium) directly to his PA so that de-oxygenated blood directly flows (albeit passively) to his lungs. The above image shows his current physiology; red (oxygenated blood) enters his atrium from the lungs via the pulmonary vein, blue (de-oxygenated blood) enters his atrium from his lower body via the inferior vena cava the two mix together in the atrium and dump into the ventricle and are therefore exhibited as purple and are pumped to his body via the recombined aortic arch. The separated blue conduit is the superior vena cava disconnected from the atrium and reattached to the pulmonary artery. The shunt from the Norwood has also been removed.

Monday morning I woke to find Gabriel big eyed looking around the motorhome. He looked cute and was observing everything and had removed his tube again.

With tube re-inserted we headed to Lucile Packard Children's Hospital (LPCH). Gabriel was obviously contemplating how to outwit the Doctors, detour the surgery and return home.

The motorhome is parked about 4 blocks away close to the Herbert Hoover Pavilion in Stanford's overflow parking lot. We're surrounded by cars parked so tightly that it is impossible to move the motorhome during the day and at night there is just us and two other RV's. No hook-ups but $5.00 a day to park isn't bad, you just have to have a life threatening condition to justify parking here. We loaded Gabriel in the stroller and reported to the Cardiology Center for Pre-OP stuff ; a chest x-ray, ECG, exam, vitals and of course blood draw.

Again Gabriel did his best to thwart the hospital staffs intentions. This time appealing to their historic aesthetic grabbing a classic Rubens pose as if to say "would you harm this body?" Which of course they did. We now know Gabriel has rolling veins and this is the 2nd time the common tier phlebotomist tried, failed and had to go secure the ace. I think from here on out we'll request the ace from the get go, the other pearl I learned is that a topical anesthetic must be ordered by a Doctor as the patient could suffer a reaction, so I need to cover that ahead of time.

Even though Gabriel's pose didn't perfectly match that of Leda and the Swan, I still think I've seen his pose in another Peter Paul Rubens painting.

All of his labs looked great, surgery was 6:15 in the am so we turned in early and set the alarm for 5:00am. About 9:45 we received a phone call informing us that surgery would be delayed as a water main had busted in the operating rooms and although the water was cleaned up no procedures could occur until the infection control team had cleared the area. The Dr calling hoped he could get us in later the next day and if not stated probably the same time (6:15) on Wednesday morning. We were deflated,  back into the world of "hope", "probably" and "maybe". Beth slept away her frustration, I had a shot of writing with a Cabernet chaser (maybe two). The following morning Amaya picked me up so I could drop her at work and use her car to find some form of distraction to get our minds off another failed surgery date. En route to the motorhome I received a call stating we were in, the follow up call asked if we could be there by 9am, 20 minutes away. No problem.

Beth and I donned our Gabriel support footwear, and headed for the hospital.

Mommy saying good bye after we had bathed him with anti-bacterial wipes and gowned him. 

Handing the lad off to the anesthesiology team.
Placing him in capable arms and saying our last good-bye.
The surgery was finished by 1:15, Gabriel had to be placed on the heart and lung bypass machine for about 20-25 minutes because his superior vena cava did not have enough length for Dr Reddy to clamp it above the aorta and below the jugular vein. The surgery went as routine as open heart surgery on an infant in the hands of Dr Reddy can go. We were able to see Gabriel a short time later after he was moved to the CVICU. He wasn't nearly as beat up looking as he had been after the Norwood.  He was swollen and pale but still looked like himself.

Back in the world of many machines but in actuality far fewer than last time and a fourth or less of the drugs. Still a little baby in a big whirling fast paced high tech world.
While intubated one lung had partially collapsed. The attending fellow stated they could increase pressure in his breathing tube to "pop" the lung or just extubate and observe his breathing as most often the situation would correct itself. The attending physician opted for simple extubation. The respiratory tech. removed his breathing tube and Gabriel didn't breathe; still somewhat sedated and used to not having to work for air, he just laid there. She grabbed him under the shoulders and lifted his torso so his head fell back hyperextending his neck and opening his airway. After a few sporadic gasps he was breathing and crying on his own.

That's when the headaches started. The Glenn procedure results in blood backing up in the SVC and raising the blood pressure in the brain, resulting in excruciating headaches. The headaches had not been a problem until this point due to his level of sedation, he had simply been "knocked out." Now he could only receive minimal pain killers as he needed to continue breathing (always a positive) and they couldn't use too many med.s this soon out of sedation.
Fortunately Gabriel's nurse for the evening was Manju. She worked diligently to alleviate his discomfort, trying technique after technique to ease his suffering. She rolled towels and created a "nest" for Gabriel which moved him into a vertical position and did not allow him to squirm out of it. The basic principle of allowing gravity to decrease pressure, as used with shock victims (either elevating feet to get more blood to the head or elevating the head to decrease blood flow to the head). Kind of a no-brainer (bad pun not initially intended but unavoidable to not use once identified) but no one had done it prior to Manju coming on duty. She pestered the Dr's for med.s and alternate med.s the like of which I have not seen any other Nurse do. She was Gabriel's advocate. I believe the purpose of life is to find your calling. I think Manju has accomplished life. Her large brown sensitive eyes weren't just sympathetic to Gabriel's pain there was real empathy when he would arch his back and scream. She could feel his pain and she had to stop his suffering. It was wonderful to watch a human intervening so significantly on behalf of another human and a blessing as a parent to have someone of her nature caring for your child. She pushed the Dr.s almost to the point of a spoiled child playing parents off of one other to get her way. Almost, I never heard her say "Well Dr. so and so said..." But she did continue to ask until she either received the drug she thought was most appropriate or a reasonable substitute. She finally calmed Gabriel with a mixture of morphine, versed, fentanyl and acetaminophen (tylenol). The entire time she worked she apologized for the noise in "The Pod" a large open room we had spent time in before that housed 4 other cardiac babies and their entourages consisting of; Nurses, Doctors, Fellows, Parents and other assorted persons. At some point in the history of hospital design someone evidently thought an inclusive room for pediatric cardiac care was a good idea but they were wrong. I thought the best care for headaches of this level of severity would be sensory deprivation. I thought back to the first time I dove the Draeger LAR V oxygen rebreather in open water during the Marine Combatant Diver course. We were dropped by Zodiac inflatable about 2 kilometers off shore of Panama City, FL. As a buddy team we descended to 20', purged the nitrogen from our rigs and finned toward the beach maintaining our heading and depth. The "driver" held the tactical board in his hands which was composed of two handles on either side of a submersible compass with slots to attach a depth gauge and watch all illuminated by a single chem light. On our first run I just tagged along by hanging onto my dive buddy's 1st stage regulator mounted to his tank valve directly behind his neck. All I did was fin and marvel at the quiet experience of diving the rebreather. The entire purpose of a rebreather is for Marine Recon or SEAL's to be able to swim unknown into enemy waters rebreathing their own oxygen and therefore not creating bubbles which ascend to the surface (which would give away the fact that they were being sneaky which is the purpose of being sneaky, sneaking). Diving the Draeger at night though resulted in complete sensory deprivation, no bubbles were created therefore no noise from the exhalation of air which normally comes from a SCUBA regulator. I didn't have the tac board and could not see a hint of the chem. light. Dressed in a wetsuit and encapsulated by the waters of the gulf I was buoyed and flying along completely trusting in the hands of my dive buddy not to drive us into a pier, prop or out to sea. I allowed myself to be free with the experience and feel the nothingness, it was like being in a vacuum, no sensation. The only sensation was my thighs rhythmically moving my fins to push me along at a rate even with my fin buddy, I made a loop of thumb and pointer finger and kept his tank valve in the middle. If I felt a slight tug I wasn't finning hard enough, if I felt a push I was finning too hard. Even the finning was effortless, we were paired with the Marine most compatible to our fin speed so we moved along at the same rate. We were also young and strong and breathing 100% oxygen so our muscles had all the food they could ever want. It was cool to experience until I thought of what I couldn't see there in the dark. The Gulf of Mexico has lots of massively toothed critters that feed at night. I started thinking of all the various species of sharks that call the Gulf home and realized I had better get my mind somewhere else really fast. I focused on breathing (you have to take small shallow breaths when diving the rebreather, just breathing off the top of your lungs) finning speed, hand position on the regulator and repeat. Focus on anything. Gabriel though doesn't know about sharks, he just knows his head hurts, wouldn't it be cool to have that level of sensory deprivation available for these little people with their heads splitting open?!

Manju finally found his happy place allowing him some much needed rest. Gabriel's doing OK but not all of the people we met last time are so fortunate. This is one of the best places for this procedure or any other infant cardiac procedure but they still have their own LPCH mortality stats. One little boy whom we had met during our last experience was the same age as Gabriel but is no more. Another family we met came out here from the Bronx with their little boy who had coded (heart stopped) while we were last here. They have fortunately returned to New York with their son but sadly with his brain function impaired. We are so fortunate for Gabriel to be doing so well and feel blessed to have our little half hearted guy.

Cousin Amaya snapping photos.

Of Mom and Dad enjoying their little boy.
We left him a bit after 11pm in the capable and caring hands of Manju.