Pursuing discharge

Man this place will humble you. We knew September was an outside possibility but we "knew" we would be out of here and probably home by September, Gabriel is always so strong and defies any cardiac kid stereotypes. His chest tube discharge volume needs to be less than 60ml in 24 hours, as of Tuesday his output was down to 80ml, we knew he would meet the goal Wednesday and the tubes would be pulled Thursday. But instead Wednesday it was 100ml, Thursday 120ml, Friday he is over 100ml. I think we forget sometimes that he has a severe congenital heart defect, even though he has the big chest scar, because he plays hard and can do monkey bars and jumps and leaps, but he is a kid with half a heart and his body responds accordingly. Sometimes things are just beyond your control but that is hard to accept as an American, we "just do it" or 'create our own paths' or 'make our own destiny'. Sometimes though there is nothing to do but wait, somethings are outside of any control, the caregivers here also. They are also waiting for the drainage to reduce.

This place will make you grateful. Gabriel's roommate underwent the Fontan two days after Gabriel, he left the CVICU a day earlier than us, and was discharged only a couple of days later. He never walked or got out of bed or exercised and had three chest tubes. We have walked Gabriel at least daily and sometimes several times a day and are here for a while longer and would not change places, the other boy deserved to leave earlier he deserved one little break. Beth spoke to his Mom and discovered they were from Southern Cal but were up here because the boy developed complications after his Glenn procedure (about 6 mo. of age). He was diagnosed as inoperably terminal, no one would touch him except Dr Hanley, of course, who revisited the boy's Glenn and just completed his Fontan and spoke to his Mom of potential cardiac developments occurring in the next twenty years. I look at Gabriel with his tubes trailing behind him when we walk and I hear the cries of these kids at night and I think of their opportunity at life. Some of whom like the roommate exist no where else and at times I think of Dr Moreau. The discharged roommate also suffered from autism, developmental delays, and other cardiac issues. We are so fortunate Gabriel only has the one issue. Perspective is so relative to experience and exposure. Within hours of his discharge the roommate was replaced with a middle school aged boy with a cardiac condition unknown to us but with probable developmental conditions as evidenced by his speech, cognition, and physical posturing.  His Grandmother spent a few hours with him and left, we've only seen her two other times in the last 72 plus hours. His first night was rough, he was alone in his bed and several times throughout the night he whimpered "Mama." I had to page his nurse several times, the first was after he said he had to pee and the second was after he howled in pain for about ten minutes. The hospital provides a sleeping bench and a recliner but two hours is the most I've managed to get on any one night and I don't think Beth has come close to my numbers. The next evening the charge nurse for the ward  provided a sitter to spend the night with the boy. I thought the concept was grand not only for the boy but also for Gabriel and I. I hadn't' considered  conversations between the sitter and the nurse though, which punctuated the night for hours. A short time after the conversations subsided and I had started to doze the boy adamantly stated, "I need to poop" and a noisy hour was required to resolve the issue. I started to finally doze off again and the boy spent about twenty minutes stating "my finger hurts." Again perspective hit, and I thought of how smart and aware Gabriel was and how tiring all of this is and thought of this as a lesson in gratefulness and patience. By the way God, I have never, ever, envied Job, just to be clear, sir.

Dr Hanley speaks to the parents after surgery and told us that the average stay post surgery is 11 days. Today (Friday the 2nd) is post-op day 10, maybe Dr Hanley is so experienced he evaluated Gabriel during the surgery and thought, "Yep, average healing time, 11 day body." Dr Hanley if not THE most experienced surgeon in the world at this procedure is one of the top 5, we should have listened to his eleven day pronouncement. It made me think of my knowledge of structure fires and  I know what a problematic rekindle looks like and after we've gained fire control I know the ones which we need to spend extra time on overhaul so the fire does not rekindle. I remember as a hoseman spending hours in attics mucking out sterile looking cellulose insulation and cursing the Captain making me dig all of this stuff out that "was just fine" and 6 feet from the last spark finding another hotspot and thinking "I guess the old guy does know what he's talking about." This discharge timetable is made more elusive and directly increased some of our frustration due to varied information we've received. When we were initially scheduled we were told 5-7 days post-op for discharge, similar to the Glenn. When we met with Dr Hanley he stated this procedure was much more difficult for the body to resolve and stated 11 days. Dr Roth told us the average time was 13 days. Today a Nurse Practitioner told me that it was not uncommon for Fontan patients to spend 2-3 weeks post-op. We're grateful we're here and keeping chasing that date but want Gabriel solid before we leave.

This place will make you tired. I don't know if I'm hyper sensitive tonight or acutely aware or hyper-acutely sensitive but the alarms and tones on the machines seems especially loud. Gabriel and his roommate are both hooked to pulse oximeters to measure their breathing and an EKG that measures their heart rate, and one of them tones an alarm at least every 20-30 minutes because their oxygen saturation, or heart rate, or respiratory rate slightly dips below the physician desired parameters programmed into the machines. Gabriel sleeps through most of it but his sleep often appears as not very restful, I wonder if these kids ever hit REM while they are in the hospital?

The house closed today, Beth and Bella are happy we are no longer "homeless."