I was going to go all the way back to Valentine’s Day of 2001 (ok not quite ON that day, but around that time), when we had an earthquake in Seattle that resulted in me breaking my shoulder blade, but I decided to spare you. We’ll pick up the fun walk down memory lane in 2008.
February of 2008 – I was getting sick because of Miss Kendall, but did not know it yet. And man there is some FUNNY STUFF from back there…that hyperlink (click on the february of 2008 text) takes you to all of my posts from that month. Hilarious. At least in my own mind. As Ben likes to say, the Read family is the funniest people we know. Admitting it is the first step…
February of 2009 – Right AFTER Valentine’s Day, little missy decided to get sick in a big way. It’s what started this whole fun fiasco that we are still waiting for her to “grow out of”. Failure to thrive, RSV, bilateral pneumonia, urosepsis, staring death in the face and yelling “you’ll never take my freedom”, PICC lines, feedings pumps – and a partridge in a pear tree. We barely made it home in time for Kealey’s birthday. Kendall got her first tubey – an NG tube that was inserted into her nose and down into her tummy. She also got technically another tubey – the PICC, but that wasn’t for nutrition.
February of 2010 – Second verse same as the first. Kendall decides to stop breathing one nite, and back in she goes. This started a fun merry-go-round of springtime hospital stays. Again, we get out JUST in time for the Valentine’s Day parties at school (one of which i was in charge of), and go SQUEAKING in to the dance competition with about 30 minutes to spare. (Kendall also apparently likes to go into the hospitals around every dance comp the girls have. Just to, you know, keep things interesting.) Kendall also got her third tubey – we switched her G-tube button into a G-J long tube in order to give her overworked/hardly working tummy a break, and feed her straight into her intestines.
(and yes I do realize this photo is labelled march – i didn’t have pics of her february tube change like i was looking for – and this shows her GJ tube coming out of her tummy along with a few other random wires from being inpatient at the time.)
February of 2011 – I am not one to breathe life into things, but I gotta tell you, this kid’s in a tight spot right now. So far, no new tubes (yay! – unless you count the new “tube”/port a couple weeks ago), but her gut is definitely not in love with february at all. i’ll spare you the gory details, but let’s just say that anything we can get into her, is quickly coming right back out. Via many different orifices. Around any kind of plugging mechanism we try to stop it with (and i mean her tubes. I’m not even going to address it if you think i am trying to plug up other holes!) Even with the port for fluid replacing, it doesn’t help us replace calories/electrolytes, and THAT is where she starts to run into problems. I think the hardest part of seeing how bad it got yesterday (with the fluid output that we could measure), was how HAPPY she was, seemingly because she was not in pain, as she has been for a few weeks now. Let’s just say that part of what we were getting out yesterday afternoon was stuff that had been put in the day before. She isn’t seemingly “pseudo-obstructed” as she gets when she has another illness going on that leads to this kind of “gut shutdown” that she deals with on an occasional but temporary basis. she just seems like she would rather not have a lick of food/fluid in her GI tract! Last nite was a little worrisome only because her nurse had advised us to stop all feeds, which is a good thought, except metabolically she can’t handle an overnite fast. So we just ran sugary pedialyte at a very slow rate, and i set my alarm to get up a couple times to do accuchecks (poke her finger and check her blood sugars) to make sure that even at the slow rate she was a.) absorbing some of the sugar and b.) not dipping too low/otherwise reacting. Or c.) choking herself with one of the 6 tubes hanging off of different body parts.
So – that’s where she’s at now. Hinged precariously on a cliff edge of “check-in to Hotel LG” or “Casa de CHW”. I am trying to not let the past history bring me down, but it’s definitely a tough game mentally to not go there. I don’t know what else they would really do for her inpatient (except give her more appropriate fluids than what we have at home – D5/D10 vs. the normal saline we have here), and possibly monitor her labs a little bit more. Considering that her GI already wanted us to stop in the ER on Friday when we were there, I just think his leash is not real long as far as letting Kendall just go on like this willy nilly with not tolerating full feeds, or really any feeds to speak of. But – there’s always hope! Maybe she just needs a short break for her tummy (HA! try telling her that!), or maybe she has some strange little virus that is just hitting her this way…
I need to just be done with this post since i started it this morning.
I have lots more to say. Mostly about my special amazing beautiful wonderful hug from Jesus called a “Keurig”. But also a few other things. That may or may not hold your interest. Don’t say I didn’t warn you.
Much love to my peeps tonite.