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?

1 comment:

Anonymous said...

Yay! I have thought of you guys often over the last month and a half and I rejoice with you that he did so well and is recovering! 2/3 of the way through it all! It sounds as though Gabriel is a crazy fighter and a best case scenario like our little dude! We were home 3 days after the Glenn procedure and people were astounded! In speaking about the "never being normal" thing...I think there are 2 things:
1. You must allow yourself to grieve those feelings and thoughts as they come. They are real feelings and they have come at different times for both Chris and I. BUT
2. It is amazing how God knows our kids and the lives they are living and wires their interests and passions in those areas. Elijah has only asked a couple of times to do things that we had to say no to. The rest of the things have worked themselves out...Not saying he doesn't deal with sadness or frustration at times because of him feeling different but in his 11 years of life we have far more joy, happiness and wonder at watching our guy (operating on half a heart) develop and grow and mystify people with his "normal" life!
We would love to be of support to you guys in any way that we can...don't ever hesitate to let us know! Will continue praying...see you in late August!
Chris and Camille Rodes