Wednesday Update 1pm

Coupla things have been happening/discovered with Henry since my last massive missive (like that one, Dad?)...

On Monday night, Henry finally exhibited all the dangerously low vitals that he showed everyone at Arnot. He brady'd quite frequently and his oxygen saturation levels dipped in conjunction. Now they had something to go by on THIS end. This prompted a myriad of tests (bloodwork, xrays, echos, etc etc).

From then til now, Henry has had a milk test (to evaluate his reflux severity) and relatedly, is going through a more specific reflux test to see how high UP it goes into his esophagus. It is like an NG tube that is directed thru his mouth into his stomach, but it has little electronic 'notches' on it, all the way up. Every time he refluxes (which is just about constant), the tube will record where the reflux landed. BTW, for those of us learning right along with me: Henry does not need food in his belly to reflux. He has been off feeds for over a day (poor guy) and if there is a severe reflux issue, it will happen with or without food/fluids in his stomach.

Right now, they are trying to determine HOW to treat the reflux, which has definitely made itself quite present. There are a number of solutions, they are trying to figure out the best one. Some that i have heard: 1) inserting a "G-J" tube. This will feed him directly into his small intestine, bypassing the stomach completely, thus eliminating reflux all together. 2) surgically creating a 'nissin,' or a 'twisting' of the stomach around itself (using stomach muscles) to create a 'cinch' or closing off of the stomach back up into the esophagus. This is a more complicated surgery and would require them going back in to create it. 3) increasing or adding other reflux drugs. Right now, however, it seems that one of those types of drugs tends to bring his oxygen levels down, which is counter-productive to THE OTHER CONCERNS they are having with Henry, the desats and bradys.

Which is a whole other ballpark - - sorta. The two (three) can be related or not. Think of branches of a tree (that's at least what i am doing). They're all in the same tree, but sometime a branch may never lead to the other one.

Dr. Ravishankar mentioned to me yesterday that his hemoglobin level was low. He is at 10 and they like to see it around 13. Hemoglobin is the protein molecule in red blood cells that carries oxygen from the lungs to the body's tissues and returns carbon dioxide from the tissues to the lungs. If it carries oxygen, and Hank's oxygen levels are low, makes sense to boost them a little with some extra blood. This was decided to actually happen at 11pm last night, a phone call to my cell in the RMH room, that i had to consent to. I also discovered in this phone call that Henry has my blood type too: B+.

They also discovered that Henry has rhinovirus. AKA - - the common cold! This might be contributing to his cough (perhaps also reflux-related) and the "runny nose" that he's got. His eye is also getting goopy again. Poor little guy - - he seems a MESS in bed. Coughing, groggy, tubes and wires and he's hungry! I think he's figured out no one's gonna feed him so he's resorted to sleeping vs. energy-wasting crying. Smart kid.

It's hard for me to hold him because of all the tests they are doing, monitors attached to his body that are counting things and recording THINGS. Not to mention, when he is sleeping soundly and quietly with little congestion and coughing and ANY noises for that matter, i like to leave him alone. Letting my little mouse sleep.

To add a personal element to this post: I MISS MY FAMILY AND HOME SOOOOO MUCH this time around. I'm cool, don't get me wrong, but i guess, before, i was just coming and going to CHOP and not focusing too much on the fact that i wasn't at home. But now, i know how good it feels to be there, with Ron, and Sam and Thom's antics, and little Hank in his 'spots' (living room p-n-p, bouncy seat, swing, bedroom p-n-p) and i want to be there so bad. I spend most of my days at Henry's bedside, holding him, or not, watching numbers beep and boop, and i miss everything away from here. I find such power and comfort from my husband Ron being my rock. He knows how to hold me JUST RIGHT when i have an emotional tear-filled breakdown (they DO happen folks, believe me) or 10 minutes after i scream my fool head off at him for not putting laundry in the dryer (even though i've made it quite clear to EVERYONE that laundry is MOM'S THING, don't touch!). This paragraph is all about MY BOYS. Sam is being so much more astute to his surroundings and goings-on. This trip, for the first time, he started crying and said "Mommy... i don't WANT you to go to Philly!" He's now AWARE that going to Philly means i'm gone for a while. What a total bummer.

To conclude, thank you so much to everyone who's received a txt msg, a FB msg or a phone call asking for help watching Sam and Thom while Ron continues, to his best ability, to go to work without me being around. I'm so grateful for just being able to ASK. If you can help, you can, and if not, that's cool. But i'll never hesitate to ask. I, myself, anticipated returning to work this week, but Henry had other plans i suppose. A thank you to Wegmans, as usual, for being understanding of this.

Sigh. Ho hum. Dum dee doo... More to come, of course...