Saturday, February 9, 2013

Surgery and post-op details

Sometimes life just doesn't stop throwing curve balls.  The apartment provided us by LPCH Housing department (at about 10-15% of the normal cost) was only available to pre-delivery patients (and then only to the female sorts). We have known we would be moving and have been on the waiting list for the Ronald McDonald House. Prior to arriving here in Palo Alto I debated driving our motorhome but all the RV parks are 30 minutes or more away and we were assured by the housing dept. we would have a place to stay, they just couldn't tell us where. Some ambiguity in life can be fun or even romantic but not knowing where your family will live does peg the parental anxiety meter. Our housing contact Oscar notified us the week prior to surgery of our eligibility for the host home program. Evidently the Ronald McDonald House was running at capacity and our family was a good match because "No one at the apartments has complained about you." A little bewildered by Oscar's accolade, I ventured to the housing office and met with Erin the coordinator. I was hesitant to commit to the program as living in someone else's house just didn't seem like a good fit at this time. I was relieved to discover it was actually a guest cottage in Palo Alto (we need a little privacy and alone time, and a kitchen). The down side was that we had to move out of the apartment the day prior to surgery, into a motel and the next day (of the surgery) move out of the motel and into the guest cottage. Surgery was scheduled for Tuesday so Sunday we packed the kids up and delivered them to Grandma and Grandpa's RV. My folks had been "dry camping" in a Stanford overflow parking lot and were eager for a change of scenery and time with the Grandkids. Beth and I spent the afternoon with Gabriel and packing to depart. I had grand intentions of having everything packed and cleaned for a rapid move out by 1000am... we loaded the car at 1100, dropped off the keys and headed over to see Gabriel.
 Getting x-rayed with wonderful Nurse Roberta assisting.
 Dad and Gabriel.

The production for us to hold Gabriel is immense, requiring 2 nurses and a coordinated movement of baby and all things attached to the parents lap. We thanked them profusely and they cheerily responded "no problem", I can't say enough about the nurses here and in general, they are a special breed of people. After holding the little guy we were briefed by a surgical PA (physician's assistant) about the procedure Gabriel would undergo tomorrow. We had researched and studied what he would be going through but the PA brought up a few things we had either missed or had not grasped. The Norwood Procedure (this time a link to Packard Children's Hospital) seems straight forward but the written description does not mention the aortic rebuild includes cadaver tissue, the muscle tissue is cut into and a goretex sleeve is sewn into the tissue and the entire atrial septum is "scraped" out. We knew it was open heart surgery, we knew it was invasive, but holy crap!  We had missed how invasive and amazing and complicated this procedure was and on a tiny neonate heart.

A little after 6pm we checked into the same hotel we had last seen about a month ago. We missed our nice apartment but one night, we could do that. We looked for a restaurant and found an Italian Place named with 3 classic Italian mens names one was Luigi, I think another was Johnny, I don't remember the 3rd. Italian food always comforts right? Beth and I split their chicken toscana with mashed potatoes, probably the best food we've eaten on our trip, amazing in ever respect. The menu bragged of the place being founded by the 3 friends in 1956, not much had changed since and this provided a nice bit of comic relief to Beth and I. It was like going back in time to the quintessential schmaltzy New York Italian restaurant; red and white checkered table cloths, sagging coffered ceiling, iceberg lettuce salads and that repulsively addicting whipped butter spread. Well fed and sarcastically amused we returned to the hotel and passed out in the king sized bed.

Our wake-up call at 5am came way too early but we had to arrive at the hospital by 630 so we could see our little guy before they took him to pre-op. The anesthesiology team arrived at 730, unplugged his bed from AC power and rolled him away, we followed behind and were able to kiss him before they moved him into the OR. The balance of the day is probably the longest 7 hours we have ever spent. At 1230 they notified us they were closing the chest. We were thrilled! They rarely close the chest and only do so if the operation went perfectly. A couple of hours later though two members of the surgical team told us it would be a few more hours. They assured us things were ok but we knew something had changed and things weren't as perfect as they had been. Adding to the stress was the need to check into the guest cottage, drop paperwork with the host family and pick up the keys so Beth and I could sleep somewhere. We had no idea how late things were going to go. My cousin Amaya texted about then and asked if she could help in any way. So she stopped by the host family's home and introduced herself as "The Cousin" to which the person at the door replied "Oh, I'm the cousin, let me go get them for you." You can't make this stuff up. Shortly before she returned and while Beth also had to step away from the waiting area I caught a glimpse of Gabriel (actually a blur of his cart and the surgical team) exiting the elevator and moving to the CVICU.

I was elated to get the shot but after showing it to Beth and Amaya realized it probably wasn't going to make any magazine covers. After another hour or so Dr Reddy briefed us on the procedure. Concisely he remarked that the surgery had gone well, they had closed the chest but then Gabriel's respirations increased and they had to reopen the chest and leave it that way because the lungs needed additional room.  Evidently the foramen ovale (the hole in the atrial septum) had reduced to about 2 mm so the back pressure of blood in the lungs had increased which did not allow them to expand and contract fully which affected some development at the cellular level and caused rigidity of the lungs. This would no longer be a problem as part of the procedure was the complete removal of the atrial septum, so Gabriel now has only one huge atrium to go with his one ventricle, literally half a heart. I think we spent about 13 hours at the hospital that day. Amaya lead us to the cottage which she had stocked with spaghetti fixings, milk, bananas and chocolate. The place was a little smaller than we had thought it would be and Beth started to stress about where the kids would sleep. I wasn't the most sympathetic... we both realized how completely wiped out we were but sometimes you can't stop your behavior, neither of us was nice, not horrible, but you know... We moved on, I planned to cook the spaghetti when Beth realized that the cell phone was almost dead and that was our one link to the hospital and Gabriel. Earle had wittingly placed all of our electrical adapters, cords, chargers, etc.. in one bag for easy retrieval. That bag also housed the dvd's and therefore had went with the kids. I ventured out to retrieve an i-phone cable and some chow. I came across Rubio's which boasted the greatest fish taco's ever. They were ok, I've been spoiled by Greg Ramey's firehouse fish tacos; halibut breaded with his special blend and topped with cabbage and a jalapeno ranch sauce. The next day we visited Gabriel and were advised he wasn't urinating enough and if he started to retain fluids they would insert a drain tube in his abdomen.
 Gabriel in the CVICU.
Our first view of his eyes open. 

 We departed the hospital and headed south to visit the kids. Isabella and Powell were as excited to see us as we were them but they hadn't missed us too much, they were having much fun adventuring and playing. Powell remarked "We really like it here because we're unsupervised." Unbeknownst to Powell the grandparents have a view of the entire area from their RV, but no sense in telling him.

The kids took Dad rock hopping, Isabella practiced the finesse technique, Powell would best be described as "slogger."
Powell also showed me how well he was riding his bike and how fast he could ride down the campground hill, and then he crashed and landed chest first on a rock. I picked him up, kissed him and told him we should probably return to the RV. He wanted to make a few more runs, a bit more cautiously this time and crash free. We entered the RV, I shut the door and Powell screamed hysterically... yep the old finger in the hinge side of the door while Dad has his back turned trick. Little ice, a lot more cuddling, Beth was in tears and my Father remarked "We've been injury free until you showed up." I took that as a sign that we'd better return to Palo Alto before we had another child in the hospital. We swung by the CVICU and visited Gabriel again. Leaving the hospital Beth started to cry about her little family and the separation to the winds and the injuries to her children... Males don't think (I know many of you would love a period right there) about the female perspective, especially the mother's perspective. Guys love their children and many of us do so significantly but we did not gestate them in our womb, we did not deliver them, I think mothers do actually feel (empathically) their child's wounds. Biologically fathers are more removed. I forget that, a lot. This coupled with the post-partum hormone dump she is undergoing can lead to some emotional moments. A new strategy is in order.


Natasha said...

I am praying for your little one and your family. You're blog is wonderful, please keep updating! Something I found helpful during the Norwood/post-partum mayhem is a natural stress reliever called Rescue Remedy. Just an idea.. Best wishes!

Norma from Idaho said...

Ahhhh. . . . The devil's in the details!

This is no picnic. Takes more grit than most people have.

Nice to have the pictures.

Sharon Brumfield said...

Thank you so much for taking the time to tell us about your journey. We have been praying and will continue to pray for you all.
Tell Beth her cousin sends hugs. :)