Monday, September 20, 2010

the hits just keep on coming

it has been so long since i had a chance to write last let me first say thank you for continuing to check the blog and having faith that it will, at one point, get updated again! gavin has been in and out of the hospital - we had him home from the NICU the first time for 30 hours, then rushed back to the ER and readmitted to the NICU for another 16 days - then home again with us for 10 days and back by ambulance to the ER at Banner Samaritan before being transferred to the PICU at Scottsdale Shea on September 9th.
we brought gavin home (again) last wednesday the 15th.
we had another scare over the weekend as his heart rate was tracking in the 180/190s and i couldn't seem to bring it down. he has had horrible gas from his feedings and so with that and his obvious lung disease i called everybody i could think of (pediatrician, NICU, PICU...) and the bottom line is that i didn't get a lot of direction as it's all one big cat and mouse game because nobody wants to step on anybody else's toes with telling us what to do for gavin other than "you might want to just take him into the ER."
for us, we feel torn either way: we take him in and he gets IV'd, poked prodded and a bunch of tests run plus being subjected to potential illness VS. leaving him home with us and keeping him there too long to where we put him in harms way because has no lung reserve. tracee and i just cried on the couch saturday afternoon as we experienced this dilemma. we are worn out and always on edge with what to do for him.
tracee's parents came over and helped us keep an eye on gavin saturday night. we just prayed and cried out to God for mercy and grace. tracee concluded that we should put him down and let him swing for a bit to calm down. her mommy intuition was good and gavin began to settle down and his heart rate started to come down into the 140/150s range where it should be for gavin.
he has been fighting a cold for the past few days and i think i already mentioned the gas but it really irritates him and puts him on edge for hours at a time.
tracee and i are shifting with gavin throughout the night: i typically sleep from about 10 - 1am and then she goes to sleep from about 1am - 7am and then i go back to bed for a few more hours.
saturday night, tracee was hit with her epilepsy condition that comes on when she doesn't get enough sleep and/or is stressed out. it makes her shaky and causes her to drop things. cleary with that going on, she wasn't able to care for gavin so i stayed up with him all night and allowed her to get about 9 hours of sleep. that was exactly what she needed as she felt better by 1pm on sunday afternoon. once again tracee's parents came over to help relieve us so i could go back to bed - i slept from 10am - 3pm to get caught up.
here it is monday morning and i'm back to work and tracee is home with the day nurse getting ready to take gavin to his doctor's appointments at the hospital to see the developmental pediatrician. everyday it is something: pulmonologist, pediatrician, physical therapy, evaluation appointments, etc...
pray for relief for us. pray that an end would be in sight and that we would be able to get the break we so desperately need. we are both very frustrated and ticked off at this point. i don't know what else to do and a lot of times i have no words for what we are going through. it's so painful to watch your bundle of joy suffer in front of your very eyes. we pray for very real needs like normal breathing with normal lungs. we don't pray for trivial things like a new car or a really great vacation.
i'm not sure what post traumatic stress disorder looks like but i can imagine that tracee and i are dealing with it. i can't imagine that it is any good for your body to live off of adrenaline for 6 month's straight but that is what i've been doing.  WE PRESS ON! we don't have a choice - we are fighters and we will push through the crap and get it done. gavin knows that when he cries for mommy and daddy that we are there and that we will be there every step of the way.