From the Mouse Rooftops???

I want to shout it from the HUMAN rooftops, but i'm terrified of jinxing things - but - rumour has it that Henry and I are comin' home tomorrow!!! The reason i'm only whispering it is because the resident 'slipped' something about SOMETHING on his upper spine they want to look into further. Honestly, i feel like MRIs, at this point, are a blessing AND a curse. Stop finding things and whatever you guys do, quit casually dropping the term "neurology." That's the last team i want interfering with our slew of 'stuff' already!

But I digress. Hopefully i will mention no more of what i HEARD this morning and Henry and i will be packin up tomorrow and heading back to Corning. I foresee the trip taking me 6+ hours. I am under strict direction to stop at LEAST once for feeding and changing and walking him around for 30 minutes. Part of me thinks this will be easy breezy and the other part is very nervous for what "could be." And WHAT COULD BE you might wonder? Well, a bunch of things. I mean, imagine for the first time since your child's birth, your child who has been diagnosed with a few significant issues, is off all the monitors that you've gotten so used to hearing beep and boop. There is no more casually looking up to see if his heart rate has reached a certain level. There is also the fear (probably completely unfounded, but POSSIBLE, none the less) that his G-Tube starts leaking profusely or WORSE, comes OUT! And there's the challenge of keeping his pacifier in his mouth from a backward seating position in the back seat! His binky is his BUDDY!

This post is not meant as a vent session, and I'm certainly not complaining. What i'd love to convey in words is the dichotomy of what i'm feeling and experiencing the closer i get to discharge. There is a certain amount of UNBRIDLED JOY knowing that i will be reunited wholly with my family in my HOME. Joined physically to the hugs and luvvins of all my men and then all my close friends in town. There's the comforts of my BED and my bathroom being MY OWN.

But then there are all sorts of trepidations for this being a whole new direction in my life - our lives. i was given the opportunity, much wanted on my behalf, of changing Henry's G-Tube dressing for the first time since his surgery 5 days ago. The nurse had told me earlier in the morning that he had worked himself up earlier, fussin', and that his site was 'draining' a little. There is a LARGE DIFFERENCE between a little drainage on the perspective of a trained, impartial nurse, and that of Henry's MOM!!!

I opened the swaddling blankie and the first thing i noticed was a foul smell, followed by a stained and damp undershirt. The nurse assured me this was fine and normal. Then I took a deep breath and began the process of changing the dressing, which means removing the damp, grungy, brown gauze and surgical tape. The surgical tape has rendered Henry's oh-so-delicate baby skin RAW on his belly. The gauze was gross and sour. I felt my hands begin to shake with nerves, scared that i was going to dislodge his Mic-KEY button from his abdomen ENTIRELY and there would be a gaping bloody hole with stomach contents pouring forth. That didn't happen, btw. But along with the shakes, i started sweating and then the tears started coming. Never in a million years did i imagine myself doing what i was doing on my child. But while i was experiencing all this, i never felt like quitting because i realize that the more i do it, the more it will be like changing a stinkin' (pun intended) diaper. You do whatcha gotta do, and I GOTTA DO THIS! For the record, Henry was being GREAT thru this whole exploration and learning. He only wiggled a little bit. I cannot imagine how the whole thing would have gone had he been bucking and kicking and screaming, as babies sometimes do.

Henry's nurse yesterday, today AND TOMORROW (completely unprecedented in this unit) is named Molly* and she has been AMAZING. Not only is she gracious and patient, but she's an excellent teacher. She's good at praising me too, which helps! Haha. She's also rocking in the 'contraband' dept., packing and setting me up with all sorts of extra supplies i'll need at home, including some things i know won't be given to us by home care.

... and that's a whole other topic for perhaps another time. Home care. Home supplies. I'm going to not only become a NURSE, but completely schooled on what is and what isn't covered by insurance. I'm in the process of applying for Social Security disability income for Henry, thanks in LARGE part to the direction of two or three friends and THEIR knowledge. Not once did either social worker at either hospital inform me of this privalege and benefit. I naively thought that social security was primarily for a retired person's income. I have a lot to learn... in many many ways....

Again - i digress. So - psst - - I'm pretty sure Henry and i are heading home tomorrow, assuming that he's a good boy and passes his carseat test (has to remain in it for 2 hrs max).

"Then Mama... Mama I'm comin' HOOOMMEEE"

*name withheld to protect the HELPFUL and innocent.