Tuesday, February 19, 2013

The Rollercoaster (literally and metaphorically)

Friday was good. We closed the day with dinner at my Cousin Amaya's; Beth and I and the kids and my folks. Amaya cooked some great spaghetti and we brought dessert from Mayfield's Bakery (probably worth a trip to Palo Alto just to sample their pastries, their croissants are the best and they make one croissant stuffed with ham and gruyere cheese!) I picked up a chocolate torte embellished with raspberries.

Saturday afternoon I took the kids to Santa Cruz to hang out with Rich while Kelli was in her flamenco workshop. Beth spent the time with Gabriel.

 The kids asked what a "boardwalk" was for the last 24 hours. We parked on the pier and after their first glimpse they new it was good!
 I feel bad posting this for my Northern (AK, ID, MN & other non-bikini and board short wearing February fun zones) friends and family.
 A cool wooden roller coaster, Powell salivated but he was about a foot shy so we rode the dragon roller coaster which still bounced Dad around all over the place.

 Uncle Rich and Bella.
 Dad and Powell on the spinning around thing. Rich and Bella wanted no part of it.
 In the process of flipping over, Powell's shrill scream was reported in San Francisco.

 Isabella exiting the bumper cars.
 Isabella and Rich are in there somewhere.
On the tilt-a-whirl with Powell. I think he might have enjoyed the day.
 Leaving the beach and heading back to the pier.
 The kids and Uncle Bunny.
 I'm tellin ya, people have to make stuff!
 Dad and Uncle Rich won! Although I'm not sure if he went back to the hotel and napped.
 Driving home, I wouldn't be able to move my neck for a week if I fell asleep like this.

Early Sunday morning my folks stopped by to see Gabriel and called with a glowing report. The chest tube had been removed, he was looking and doing great! With three days of good news we settled into a lazy morning and didn't rush up to see him. I went for a run and was amused when Janis Joplin popped onto the random shuffle of my iPod singing "Oh Lord won't you buy me a Mercedes Benz" as I ran past driveway after driveway filled with a Mercedes or similarly priced automobile. We eased the kids out of pajamas and arrived at the hospital in high spirits. These were dashed immediately after Gabriel's RN advised us he was experiencing tachycardia every few minutes and had started about 15 minutes prior to our arrival. Tachycardia is an elevated heart rate, Gabriel's resting rate is about 150 beats per minute (bpm). His rate was shooting up to over 210 bpm for a couple of minutes at a time and would then settle back to his normal rate. Dr Roth advised us this could be caused by decreased electrolytes particularly potassium and magnesium. Gabriel was running low on these minerals due to the lasix (diuretic, which means you pee a lot) he needed to be on to get rid of all the fluids which had accumulated due to surgery and the healing process. This stuff is all so interrelated and the Dr.s and nurses are trying to find the perfect balance of med.s that equate to the perfect solution for the particular patient. Dr Roth also mentioned the tachycaria could be caused by an extra nerve bridging the ventricle and atrium so that on occasion a circular firing effect could occur thus resulting in tachycardia.  He also cited a study written by a colleague of his working at Boston Children's Hospital which showed that infants who had experienced atrial trauma (having your atrial septum scooped out qualifies as trauma) were prone to experience tachycardia. He also discussed the fact that there may be clotting around the shunt (goretext tube going from ventricle to atrium).   The candor and forthrightness of the staff is fantastic but at times too much information definitely adds to ones anxiety level. During rounds they also discussed his AV (tricuspid) valve and believe it may be mechanical (a problem with the valve itself) and not just caused by back pressure. This means it will need repaired at some point. The hope is to control it as best as possible with med.s and repair it during his second surgery at 3-4 months of age. The other option (if it can't be controlled with med.s) is to reopen his chest and fix the valve now. Beth commented, "We're never going home." We spent the rest of the day at his bedside and due to the RA line and chest tube removals were able to hold the little guy which I think did more to console us than him- or maybe it was an even match. I think I mentioned earlier though that this place will slap the self-pity out of you with the force of a 2x4 to the head. The baby girl across from Gabriel not only has cardiac issues but has been going through morphine withdrawals for the past several days.  The baby boy beside Gabriel coded (went into cardiac arrest, heart stopped beating) last Friday. They performed CPR and he's been on a heart and lung machine since and is comatosely sedated. We're just looking at tachycardia (which could take us to cardiac arrest) and a faulty valve (which could do the same) but we aren't there. This past week we had started to plan our trip back home. A couple of days in the CVICU. a week or two in 3 west, a week at the cottage, home by mid-March! We're moving back to thinking in 24 hour increments, carpe diem baby ("baby" here used colloquially and not in any sarcastic form) cause that may be it .

 He doesn't look bad and while his heart rate is racing over 200 his face remains calm, without the EKG you'd never know anything was wrong. The Dr.s had the pharmacy load  an IV with electrolytes especially Mg & K. He is also placed on propanolol used to treat hypertension, anxiety & panic. His tachycardic episodes ebbed throughout the afternoon and the last occurred about 3:15 pm. Evidently it was primarily electrolyte related. So the evening improved and we were able to hold him for the afternoon and evening.

 Dad looks tired.
 Mom looks good.

 We are blessed to meet and love our little boy.
 Dad giving him a bath and washing his hair.
 I enjoyed giving the bath a lot more than Gabriel enjoyed receiving it.
Monday morning rounds were positive! No tachycardia since the previous afternoon, everything was looking good meaning the balance of the med.s was right on! I asked about the tricuspid valve, if it was still looking mechanical. The medical team believed that it was more hydraulically caused and had not witnessed it prolapse on the recent echocardiogram. The Nurses all commented on what a happy baby Gabriel is. If he's awake he'll just lay there and look around. Dr. Roth stated the team should focus on 3 West as a goal no later than Thursday and preferably Wednesday. I told him that sounded great and we'd let them take the big picture but we'd just focus on 24 hours out.
 Happy Grandmother Lois holding Gabriel.
 Tuesday evening and all is well.
Cousin Amaya and Gabriel, (I think she's a natural).


Norma from Idaho said...

Awesome photos. What a great treat for the kids (big and small). I've never been to the Santa Cruz Boardwalk yet.

And I love the pictures with you and Beth and Lois and Amaya. Gabriel is pretty small and pretty precious.

ddmannion said...

Thanks for the low-down Earle. I am happy Gabriel is progressing in a steady way. Good job keeping the chin up and keeping your eyes on the prize. I am sure it has been tough, but it's so cool that Boost and Kelly have made it down, along with all your family support. Everybody here at the station is pulling for you all. By the way, B-shift is now Mannion,Long, Murphy; and A-shift is now Floyd, Kruse, Liddell, (I hope I spelled Liddell correctly). Best wishes to you guys and we are hoping to see you home safe and sound very soon.

Dan M.