Sunday, February 17, 2013

Up & Down Valentines

Yesterday Gabriel was moved from his semi-private room (one roommate) to "The Pod" (a large room in the CVICU filled with 7-8 infants recovering from cardiac surgery). Lots of activity and a ratio for most patients of 1 nurse to every 2 patients, so generally a  place where patients are progressing forward or at least moving into a stable region.
Gabriel's looking pretty snug in the pod but it is so sad to watch his noiseless cries. This may change in a few days if the cause of his hoarseness is abrasion and swelling from the recently removed breathing tube or it may take several weeks if the cause is vocal cord nerve damage. Evidently the vocal cord nerves run directly over the heart and must be moved by the surgical team when performing the Norwood procedure. Pre-operatively we were advised injury to these nerve bundles was a real possibility. Time is the only real cure for this damage. Seems to be misguided desire wishing to hear a baby crying, but hopefully he'll start wailing soon. Between 9am and noon the Doctors, Nurse Practitioners, Fellows, Residents and Nurses make rounds and assess each of their team's charges in the CVICU. Gabriel had been attended by a great team, his lead physician is Dr Roth, the head of the unit. One of the fellows grew up in Eagle, Idaho and cheered when I wore a Boise State t-shirt to see Gabriel. During rounds they assess what has occurred in the last 24 hours, balance those results in the patient's total equation and formulate "the plan". Parents are encouraged to remain, the transparency is refreshing and allows you to see exactly how your child is addressed and treated. The resident might suggest a course of action which might be tempered by the fellow and finally tweaked a bit by the attending. Cool to see that they are all bringing their A-game and putting their head together to give him the very (Hemingway be damned) best care. So the February 14 plan is to pull the RA line (an IV penetrating the skin of his stomach and inserted into the right atrium of his heart) sometime later today and if he continues to drain as little as he has out of his chest cavity they will remove his chest tube tomorrow! Once these are out we will move upstairs to 3 West (no ICU in it's name) therefore out of intensive care and into transitive care where they and we will be getting ready to take him out of the hospital. A one week stay in the cottage with Gabriel after discharge, an outpatient check-up and back to Idaho! A few hours later the plan was modified a bit, Gabriel's lab results returned and while not bad they were not optimal. We took this in stride as his recovery to this point has really been optimal, a little not optimal was OK. His blood showed that he was down on some hemo-stuff (anticoagulants) and his white blood cell count was slightly elevated (potential infection), his BP (blood pressure) has also been running high. The Dr ordered some FFP (fresh frozen plasma {sounds like the dessert course on a vampire buffet}) to assist with blood coagulation, they also placed him on catopril to lower his BP. The sum result is the RA line removal is put off until tomorrow. A little bit of a downer but not too bad. Beth and I were still upbeat and headed for Saratoga Springs to see the kids for Valentines.
 Powell received new superhero underwear and Isabella a wonderful polka dot shirt.
 The highlight of the day were the balloons.... the blowing
 the showing
 the throwing!!
They literally received boxes and boxes of valentines, gifts, balloons and candy.... thank-you all. We had a grand time adventuring and playing and received 8-10 hugs prior to leaving.  The kids didn't want us to leave and we're all ready to hang out as a family but at least they're with my folks and close. Beth and I returned to the hospital to see Gabriel and meet our friends Rich and Kelli who were coming in from Boise. Rich and I met in our Fire Dept. recruit academy 18 years ago and work together at Firehouse 2 (along with our other friend Greg who also went though the same recruit academy with us). Kelli is a dancer and choreographer that I've collaborated with on several art projects. Needing to escape the cold of Idaho they flew out to San Jose to visit us and Gabriel and Kelli found a flamenco workshop to attend in Santa Cruz. 

The nurses cut the adhesive tape into little hearts, evidently it is the CVICU trademark. Rich and Kelli made it to the hospital to meet Gabriel and hung out with him and us until he drifted off to sleep.

 We left him in the arms of a nurse who was sporting an eagle, globe and anchor (USMC emblem) in the middle of his other tattoos. I asked who he'd served with, 1st Light Armored Reconnaissance as a scout. The same unit I had initially served with (only back then it was called the 1st Light Armored Vehicle Battalion, several decades of war can change things). While serving in Iraq his little sister died of cancer at the age of 3. After his discharge from the Corps he decided to enter a profession where he could help people, especially children and obtained his RN degree.
 Rich and Kelli took Beth and I to dinner at a wonderful Turkish restaurant in Palo Alto. Kelli's giving me the same look Beth normally gives me as I photograph Kelli photographing our food.
 Closed the evening with a little baclava and turkish coffee.

What firemen do on their off time.

Beth and I returned to our little apartment and prepared to crash, this had been a long day. About 15 minutes after we walked in the door the phone rang at 1130pm, the Dr from Eagle was on the other end, my heart sank and I could see fear in Beth's eyes when she realized the  call's source. The Dr advised me Gabriel had pulled his RA line himself. He had wrapped the line around his foot and pulled the line out of his right atrium, mind you this line was coiled and taped to his stomach, entered through the skin of his abdominal cavity and then entered his heart. The Dr was thus necessitated to remove the line completely. Gabriel was clotting well, another round of FFP was administered and  his chest tube drainage was looking ok. She also notified me of an echocardiogram which had been performed earlier this afternoon (while we were visiting the kids). This echo discovered the AV or tricuspid valve was leaking. She didn't believe it was a mechanical problem with the valve but rather caused by hydraulic complications (these words and explanations are my way of interpreting and explaining what she said). The primary problem was back pressure in the vasal system which was exerting enough force to overcome the AV valve and force it open, the heart doesn't pump hard enough (due to one ventricle and significant surgery) to overcome the back pressure. The body is not receiving enough blood and therefore the oxygenation level it wants so it tells the heart to pump harder, but it can't pump harder so it pumps faster. Kind of a self-defeating system which results in an elevated heart rate and blood pressure. So the Dr recommended an increase in catopril to lower his blood pressure. What a crazy pharmacological game these people play, less than a week ago they had extended his epinephrine by a day to elevate his blood pressure slightly to better perfuse kidneys to flush the additional fluids caused by surgery required to fix his heart. I hung up the phone and relayed the news to Beth. We were both devastated. A few hours ago everything had been as swell as Beaver and Wally Cleaver eating ice cream on a front porch swing. Beth cried. I felt bad for Gabriel, myself and Beth... I started to think about the timing though, why hadn't the Dr called us earlier?  The echo was performed in the afternoon and the RA line was pulled several hours ago. I realized it was because she had time. If the issue had been a significant priority they would have called us while it was occurring, but she had waited to call until all the rest of her work was finished and she had time to sit, chart, review and make low priority calls. Another lesson in perspective; a huge issue to us was something they needed to simply keep an eye on. I explained this to Beth but she wasn't accepting my revelation so readily. She slept poorly and spent the next day at Gabriel's bedside. The next day was pretty uneventful.

1 comment:

Brooke Cassinelli said...

It is all perspective, true, however, in the moment, it is scary (and sucks) and it's ok to feel that way! :) Glad you guys are getting to see friends and "de-stress" a bit. The emotions have got to be draining. Continuing to pray for you all and the journey that you're on. He looks FABULOUS in the photos. Thanks for sharing!