The post that will never end.

I could seriously probably write for the next 7 straight hours and still not be able to catch up on posts from the past however many days its been since i last posted.

{also – random note – my “P” key is sticky. So if there are random-made-up-words that make no sense, try inserting a P somewhere in your mind and see if it makes more sense. I do not have time to fix it right now, nor am I sure I want to go messing around with the keyboard on a laptop. End PSA.}

So – what have I missed…

Me having the ebola virus from hell that is STILL hanging on.

Kendall’s current medicalities.

Kendall’s upcoming medicalities.

School’s almost out.

Mini-vacay trip to Quincy with the family this weekend.

Antique shopping and what to do with it after you schlep it home.

Considering that each of these things could EASILY be their own post, I will spare you all from the mind-numbing amount of time required to read all of that if it was one post. (you’re welcome!) But i’ll try to do a quick synopsis so when i DO start posting tons of stuff this week you’re not like all “huh???” and i’m like “yeah remember?? that one time? when i wrote about all of it?” and you’re like “yeah cause you didn’t actually write about it so we have no idea what you’re talking about because you never actually hold conversations with people you just type and hope that everyone knows what’s going on with you”. And then i’m all like “oh yeah…..”

So as a good segue, and also a partial explanation of the somewhat hyper-like state of my post, I have had some kind of mystery virus/pneumonia/something for exactly 7 weeks and 1 day today. To say it has sucked would be an understatement. And yes, in case you are wondering, I DID actually go see a doctor about it. Dr. Urgentcare. Who said it was just really really crappy asthma flareup, but that I probably should be admitted for observation/IV meds/oxygen therapy, at which time I broke down crying saying that I could not handle one more HOUR in the hospital, especially not if the patient was ME. She was understandably shocked by my breakdown, I explained it to her, told her I had just about everything at home I would need except IV access, and coudln’t we at least try the oral route, lots of nebs, lots of oxygen at home? So we did. I think somewhere in there I was supposed to followup with my real doctor but blah blah blah. Didn’t have time. So i’ve just continued to muscle through. All the meds (2 weeks worth of steroids and antibiotics) are just about finished up, and I feel SLIGHTLY better, although nite time (laying down) is still horrible in that I feel like I am drowning while an elephant sleeps on my chest. I am still not sure that its all “better”, but i am hoping that this little bout has served to strengthen my immune system, and that when summer gets here (if it indeed ever does), I will be better. And i will never ever ever take for granted the delicious feeling of breathing without feeling like I am drowning again. but – there is why I am both hopped up on cold meds (false sense of hyperness for the 20 minutes they work) and have been too tired to get off the couch for more than the necessities (breathing at around 40% effectiveness for almost 2 months takes its toll on ya). AND in case you have heard typhoid mary hacking up a lung around these local parts, that would also be me. I really do feel a little better the last day or so, and hoping it is finally the beginning of the turn around. I promise if i am still drowning by Thursday that I will call my regular doctor.

 

Kendall. *sigh*……..what are we gonna do with this kid???

Don’t get me wrong, she’s doing GOOD. I mean, we are at home and not in the hospital. That is a large part of the battle right there. But she was headed towards GREAT, and then something happened to cause another little crash, and now she is only GOOD as long she has nothing zip zilch nada going into her tummy.  I should probably just do an entire Kendall update as one post in order to fully explain this all, but for those who want the readers digest version, here it is. She is still on the TPN (IV food/nutrition, which she gets through a central line. She had the one in her chest, the Broviac, till it grew yeast last month, and they took it out and put the PICC line in her arm.)  The major goal with the TPN was always to use it as a way to boost her up nutritionally and wait for her gut to fully “re-start” (as in, it seems to have stopped somehow), and then go back to J-feeds in the tube in her stomach (like we used to do prior to February’s shutdown). Anyways, with all of the hospitalizations and sicknesses and sepsises, it has just been one step forward, two or three or five steps back. It is frustrating and disheartening and I just don’t feel like we are being given real clear direction or answers or help from her docs (mostly because they probably just don’t really have any to give, and I get that) – but its hard to know “what is going on” or “when will she be off TPN” or “how long will she need the central line for so we can stop having her get these infections”. It’s a bad cycle. Her stomach being shut down means that the normal bacteria that is in everyone’s gut all the time is just SITTING THERE (not being moved through). That is a breeding ground for bacterial overgrowth. When bacteria overgrow, they look for new places to go. Because her gut (a muscle) isn’t being used, it is weaker than its normal very weak state, so the bacteria (and the normal fluid that sits in your intestine) is leaking through the walls of her intestine, and filling up her abdominal cavity (intermittently, and not to a horrific degree), but this allows the bad bacteria nearly direct entry to her bloodstream. Where it travels through her body until it encounters the fun little plastic hangout in her veins, where it REALLY goes to town, she spikes a fever, and we check back into casa CHW. She is getting sick because she has the central line, but she has the central line because her stomach is too weak to function. Like I said, its a bad cycle. One that right now, we can’t really see how to stop. But we know Who Does. And we, and so many of you so faithfully, continue to seek the Healing of the Great Physician. God does not make mistakes. There is a reason why He made her crazy little gut so intricately complicated. It may be a reason that does not make sense to our human logic. It may seem rooted in cruelty, but I do not believe that either. Because for every time I have seen this little girl cave to the pain, I have seen her bravely face it many more times.

This last week when she hit the wall of “whatever mystery thing has currently shut her already shutdown system even further”, it was brutally horrible to watch. She was an angry, hitting, screaming, kicking – in essence, not herself AT ALL. We all knew something was very very wrong. We tried to think of anything and everything else we could to help her feel better, get relief, distract her – to absolutely no avail. So with resignation, we held feeds for one nite, and got about a 50% improved Kendall the next day. We held them for one more nite, and FINALLY, after draining indescribable amounts of food (that had probably been sitting there for a couple of days) back out of her tummy, we started seeing Kendall again. Just in time for our little mini-vacation/family trip down south to Quincy IL (where I grew up), to see my whole side of the family for my cousin’s wedding. It was bittersweet – watching how GREAT she was doing, how much she ENJOYED being around everyone, playing with cousins, trying to keep up in her new braces and her drain bag and her backpack with her TPN on – and yet knowing that it was coming at a price. That at some point we will have to turn those feeds back on, and not knowing if it will start up again ok, if we will have to go back to the beginning, if we will have to watch her go through more painful screaming hitting days.

There is some hope on the horizon though. I think I’ve talked about the manometry/motility testing here a little bit before (I will have to find the post and link it). Anyways, we were originally told they would schedule us in September in order to give us more time to try to rehab her gut on our own (get J-feeds restarted). You can imagine my shock (I dropped the phone for reals) when I got a call last week that they want us up at the hospital on June 6th. As in two weeks from tomorrow. For this testing. I was at first rather against the idea. But seeing what she has gone through this week, I think it is probably time. There are a few medications that are not currently FDA approved for use in our country that have shown some SLIGHT promise for kids with gut issues similar to Kendall’s (well, what we presume to be the issue – that’s part of what we need the testing for! To pinpoint exactly what IS going on!). There are a few surgical options that may be beneficial depending on what the testing shows (not that I am a huge fan of ANY of those either). And then there’s always the fear that we will get NO info out of this testing whatsoever (it could show her having a better day than she normally does, it could give conflicting info, it could leave us no better off than we are right now except she endured two days of horrible pain and we blew through even more of her precious lifetime max). Anyways – like I said – hope is on the horizon! We ALWAYS hope for the best. We just sometimes don’t know what that best is.

There are a few other issues cropping up at the moment that need to be addressed in their own post, hopefully that will come tomorrow. Stuff that we live with, and I just never update about it cause I have to process it, and by the time I process it, its just a sucky new part of life, and I forget to come back and blog about it. That pretty much sums up most of life since the last hospitalization. And I am not trying to be a bummer when I say that it’s a sucky part of life – I just mean, some of the stuff is less than ideal, and it requires adjusting everyone’s schedules to new things and changes and whathaveyou. I can’t think of a good example right now, so I should probably just stop rambling, insert the pictures, and hit publish on this post. Its been a very long day of driving back from southern IL, and just a long weekend in general! And we jump right into it with labs first thing in the morning and then off to a “well child checkup” with Dr. Natalie, and all the other weekly regalia ad nauseum et cetera, et cetera. Now if I can just start breathing and stop coughing, we might all survive this week…

Keep on keepin’ on.

T-crest.