But there’s reason to believe that maybe this year will be better than the last.
I can’t remember all the times I tried to tell myself
to hold on to these moments as they pass.
And lest you think I am just a super poet (on top of all my other great skills – ba dum dum)…here is the song where those lyrics come from. It’s the kind of semi-depressing angst you can only appreciate as a college freshman stuck in the frozen tundra of Minne-suck-ta. But, it still kind of fits here. If you are so inclined to listen. It really has nothing to do with the rest of this post, other than, it explains the title. and kind of how I am feeling about this week, this month, this year, kind of just life in general at the moment. It’s just been a long year. but we always have hope. Things can ALWAYS look up. and I know they will! As soon as we all get some sleep. On a bed that is actually the same height the entire way around, Instead of six random squares that all form a “bed” from the pullout couch in the hospital.
Today was a long day. We anxiously waited for GI to round first thing this morning, and when they did, wow. It was the kind of bomb dropping you always are hoping for when inpatient, and rarely get. Dr. B, the attending on service GI came in and asked a few questions confirming why we were there, what her history was, and what was our biggest frustration/problem we needed resolved. And after we had answered those things, he said, “well, I’m gonna tell you, Kendall and her issues – the mito, the pseudo-obstructions, the dehydration – all of these things fit into a box we have to label ‘things we can’t fix’. We can’t FIX them, but we can support them a whole lot better, and one of the ways we do that is with a permanently placed IV called a port.” At this point my shoulders just fell – in relief, disbelief, shock, i do not know. But Ben was nodding his head and Dr B said, ok obviously not the first time this has been brought up. Ben explained that we have had a port brought up in the past, and that it was exactly the kind of thing we know she needs. We HAVE to find a way to get fluids into her faster in a way her body can absorb and utilize them.
I asked if he felt like this was really what she needed, where she was at, and his response was “ok, how many inpatient stays has she had this year? 8? Yeah, this is what she needs. If you want me to put a PICC in, I’ll do that, but all you’re doing is buying an expensive 3-month long bandaid. This is a chronic and ongoing problem. Now, the only question is, do you want to stay here this weekend and have the port placed first thing Monday morning and we can have you out of here Monday nite? Or do you want to have the surgery consult now, and schedule it outpatient when it works better in your schedules?” After some discussion (once the team had left to go finish rounds), we decided that the other girls needed us home, Kendall was probably ok in the short term, and that it would be better for us to kind of process through the decision on our own turf. you kind of get into a weird freaky twilight zone when you’re inpatient and under lots of stress. It’s not the best scenario for decision making sometimes. In fact, I sometimes stand in front of the vending machine for ten minutes just unable to decide whether i want something chocolatey or salty. You can imagine how paralyzed with indecision I get then when it comes to medical things.
So we sat and waited some more, for surgery to come consult this time. This would eliminate us having to add another outpatient appointment, drive back up here, then schedule surgery, then drive back up here for that. Surgery came by and was very thorough with regard to her ability to maintain an access point for the port, explained the process to us a little bit more, answered the few questions we had, got kendall’s anesthesia history, and went to call the head surgeon to get “approval”. Head surgeon was apparently in the OR with anesthesia, and when our doctor started to list off kendall’s anesthesia protocol, the anesthesiologist (this is a super annoying word to keep typing by the way) said “uhhh, is she a mito kid? We do ALL the mito kids exactly that way here, we know exactly what you’re talking about!” And THAT, folks, is why its worth it to drive 3 hours away. When Ben and I heard that, we were both just super at ease.
So, we will hear on Monday what day they are scheduling her for.
It is shocking to hear, and yet, not suprising. We know she has been headed for this for a while now. And we also know that this won’t be a “cure-all”. It comes with its own set of risks, along with the benefits. It is the ultimate in “rock meeting hard place”. I will do a post on what “the port” is soon, going into details, etc. about it. If you have questions about it, feel free to ask me – either with a comment here or an email to me : email@example.com It is a sobering part of Kendall’s reality right now. In that right now all of her docs (complex care, genetics and GI) up there in milwaukee were of the mindset that this is just “mito progression”. They aren’t sure why or where exactly (either her GI tract getting worse at doing its job, or possibly kidneys having more trouble regulating themselves), but they were all pretty much in agreement that this is not suprising for a “mito kid”.
2010 has brought a lot of good stuff, and its share of other news.
I need to wax poetic on this topic a little bit later cause I am so tired now I can hardly prop my eyelids open.
I hope 2011 brings much love and happiness and God’s many blessings upon all of you, friends and family near and far.