All day today I have been looking at the clock and thinking “one week ago at exactly this time we were getting called that they had finished the muscle biopsy”, “one week ago at this time we raided the vending machines”, “one week ago at this time they were wheeling her into her PICU room and I got my first look at her”…it’s weird. In some ways it has been the longest week of my life, and in others, eh, just another “normal” week in our ever-chaotic version of normal.
So we got officially discharged late Thursday afternoon and enjoyed a great weekend at home. We had our block party and a church=wide outing to a minor league baseball game on Saturday in some of the worst humidity we’ve had in a year. But we packed kendall into her stroller with ice packs and icy cold wet rags all around her to keep her cool and off we went! We really tried to limit how long she was outdoors total all day, keep her in the shade, switched her to straight pedialyte (vs. formula) for most of the day – and it seemed to have worked like a charm! No meltdowns, no puking, no hospital visits!
And we’ve just been adjusting to life with her new attachment! It’s not that much different than the NG she used to be on – it’s still NON-STOP feedings…..ugggghhhhh. Constantly pushing the IV pole around the house with us or packing the bag up special to fit in her little backpack, knowing the stupid pump is going to alarm at least 823 times while we are out (it’s always awesome when it goes off in a totally quiet place like church!), packing extra “supplies” into her diaper bag that aren’t normally in babies’ diaper bags (extra pedialyte, extra tubes, a stethoscope, syringes, and gauze pads) – but other than that, it’s life as normal! We were given really little to no training on what to do to care for this tube; just “DO NOT let this tube move for a week, keep her on continuous feeds, and take her right to ER if it comes out.” Seriously? I need a LITTLE more to go on here, geniuses! so when I called to make her follow up visit I was given the SOONEST appointment time of July 14th. Yeah, not so much. I have a kid oozing green stuff out of a hole in her stomach. “Oh, well how about tomorrow afternoon?” says the chipper receptionist. Awesome. No idea why that one didn’t pop up the first time, but maybe you have a special “oozing green stuff” appointment list that we got bumped to with the magic words. I am hoping we get a much better idea of what we should and should not be dealing with tomorrow.
To my knowledge, they will not make her totally NPO (nil per oral in Latin, nothing by mouth in plain ol’ English). She should be able to start having a few bottle feeds throughout the day as soon as she is past some unknown timeline of post op status. That’s good – retain some sense of normalcy out of this situation for her! We are waiting on the results of the intestinal and rectal biopsies before we can proceed much further with that though, as hopefully those results will give us some answers about why she can’t digest food right (based on what is coming out the other end), why it takes so long to come out the other end, why it hurts so much, etc etc. Things they are looking for are specific allergies (to all proteins, or to all sugars, for instance), enzyme deficiencies, metabolic insufficiencies, etc. Will one of these things be THE CAUSE of all the other problems? No telling.
my personal feeling is that the muscle biopsy will be the most telling, but that is a good 3-6 months out. No idea why. That’s just what it takes. And that’s if we are one of the lucky ones who get a quick turn around. There are families who have waited upwards of 10-12 months for their results. Now there is a chance that we could get some preliminary findings on that one within about 2 months, but I am not crossing my fingers. For now, I think keeping her out of the hospital and eliminating a major cause of her pneumonias is enough for me. The big answers will come, someday. For right now we will focus on keeping her tube in place (it currently gets bolstered with about 300 gauze pads and a half a roll of surgical tape), not freaking out over seeing stomach contents coming back out the hole the tube is in, and coming to terms with what i will see when her bandages are finally removed. I think the hardest thing (and i KNOW this is strange and weird, but it’s mine to own) – will be seeing her “new” belly button. I saw in the operation pics we got from the intern who went into surgery with her that her belly button was their main point of entry and was basically exploded open. So she has a new man made belly button, and it replaces the one that was the bond she and I once shared. It was her very first connection to me, and the very last thing to be separated between us. And now hers is altered, shifted, forever changed. It will be different and not mine and I want to pout about it for a little while so keep the “oh my gosh that is the weirdest thing i have ever heard” comments firmly in your heads for a few more weeks at least. Then we can all look back and laugh together about how mental i am.
So that’s the big update. Nothing totally exciting to report, and i think that’s probably a good thing!
I am sitting out on the porch right now typing this – on one of those quintessential summer evenings – the humidity is still hovering somewhere around 200% so it feels very warm out here, you can hear the hum of the neighbors’ air conditioning units all around you, the bugs are attacking the computer screen and my legs, and you just know – IT’S SUMMER. I love nights like this. I want to remember to take advantage of them more this summer. It’s the first summer in a while that I haven’t been growing a child! I hope to make the most of it!
Like this morning’s adventure of blowing up and filling the little pool for the girls. They loved it by the way. Had to drag them in kicking and screaming at 2 pm to force some cold air on them for a while! I am glad they are enjoying the weather outside though. We sat out there making up games to play with a few coins and some plastic cups, and when i finally did have to start having one ear inside and one still outside, they mysteriously kept needing to put more water in….I have no idea how two little skinny kids can displace 23 gallons of water in a matter of two hours but they did!
so this is what I hope our summer days are made of – sitting at home and melting in the heat. no more hospitals or surgeries.
my bronchitis is finally feeling better (and i actually finished a whole course of antibiotics for once!!! Go me!), and my hip that was horribly out of place all last week is finally starting to loosen up (after two chiropractic adjustments and LOTS of ibuprofen). I hope to be completely on the mend from the horrible effects of hospital couch sleeping for almost two weeks within the next few days.
thanks for all the continued prayers and help. you are all an amazing support to us, friends and family alike.