WEDNESDAY, JUNE 15, 2011 2:22 PM, MDT
The days are going fast now……
The nights too.
But sleep and what they call “I.C.U. Psycosis” is proving elusive and invasive, in that order.
Mia has had a persistent high W.B.C., and fever. Both indications of an infection or other problem. So, we took a C.T…………
Her lung condition/disease is (in fact) worse than we thought. The daily chest radiographs seemed to show improvement? and were not eliciting the kind of concern that the C.T. reveals is warranted. Her left lung is mostly occluded…… with schmutz: blood? fluid? unidentified infection? Whatever, it doesn’t matter. They need to clear. They need to heal. So we’ve stepped up work with the Pulmonary & Respiratory Therapy folks. She’s getting to wear a ‘vest’ four times a day that jiggles and sends shock waves into her chest and lungs to try to break up the schmutz. She looks like a scuba diver on a vibrating bed when it’s on. She’s awake enough and remembers that I told her we need to get the bad stuff out, or she can’t take out the endotracheal tube. So, in pure Mia fashion, she keeps asking every few minutes that they suction and try to get more stuff out of her lungs. The process is uncomfortable, and involves running a suction tube down the endotrach. tube into the lungs…. it feels like your air gets cut off, and then she has to ‘cough’ to dislodge anything,and the thin tube is pulled slowly back up and out…. hopefully bringing anything it ‘grabbed’ with it. It looks aweful. But, Mia has embraced it fully. The nurses are all in love with her. She is so helpful. No surprise.
Secondly, we identified a very large blood clot….. in her Inferior Vena Cava. This has resulted in a persistent swelling of her lower right leg and foot, and may be contributing to her overall discomfort. But perhaps not? It does, however, bring extremely serious concern and discomfort to me. This, of course, poses a significant risk to the lungs, or elsewhere ‘downstream’. This just ‘bought’ us 6 weeks of additional i.v. antibiotics, and at least six months of anti-coagulation therapy……. and very tender steps.
Thirdly, there is also a venous thrombus or phlebitis (poss clot?) in her left arm, which is definitely causing her discomfort.
The right arm is recovering from the i.v. incident that occured durring surgery, and she’s mostly just tender over the entire bicep/upper arm area with one gnarly bruise that she can be proud of.
Her p.t. began, but we can only work with her arms right now. She is extremely week, and will need to relearn now to do certain things. This is obvious.
They really weren’t kidding when they told us that she still had a long road to go? huh? no joke.
But!! her personality is STILL there! and her fiesty attitude is coming out! Today I had to stop and remind myself that a week ago I would have given ANYthing to actually interact with my daughter again! I would have ‘killed’ to see her eyes open and to know we could still communicate!…….. and now, with out words, we are. 🙂 She likes her mouth neutralized and her teeth brushed! (I think it’s because she hates the taste of the anti-yeast rinse she gets several times a day!), and she LOVES to have her arms and legs rubbed with a cold wash cloth, and her feet massaged!
Did I tell you how bad she hates the Chuck Taylor’s?? Yea,…… she does. She kicks her feet when you try to put them on! Ha!
And yesterday when this lovely young lady who specializes in Music Therapy came in to play Mia some music on her guitar, Mia told her she didn’t want to hear it!! Ha!~ But she changed her mind, as long as she didn’t play Taylor Swift (which I don’t understand, because she used to love Taylor Swift??). Well, everyone in the room, EXCEPT Mia, was in tears within a few minutes, and I had to excuse myself before my nose ran off my chin! sick! But, her voice was so beautiful, and it pulled all the emotions out of Heidi, me, even the nurse! We were all in tears! How’s THAT for supporting Mia?? It’s ok. Mia just thought we were all dumb.
This girl is so tough. A bigger heart, for sure, than most. NOt just a new one. And, if medicine and technology can help her through this, as it has so far, and if we can remember our Faith, I know that Mia will never, ever quit. She’s proven that to me now. I’m such a wuss when compared to my 11 year old daughter. Ha! I love it.
So, she’s doing so much better……. as you can see.
And so it seems so unfair, after coming this far, to be faced with such major hurdles! Still, what did I expect??? I expected this! I was supposed to know! Right???…… I guess so.
I can only afford so much time given to negative vibes and depressed pondering. The “Why?” is the stupidest question in the world….. and the first one out of our mouths when things like this happen.
I’m beginning to sound like a broken record…… and many believe I am well on my own way into the world of ICU Psychosis as well.
So, Thank you, Dr. Coor, Julie-G, Marty/Nicki, friends (too many to name), cousins, family, one and all- for your support of Heidi, Eli, and me, not just our daughter. And thanks to Heidi, Sue/Pete, Bob/Jan, for holding the “Family” unit together. She’s been staying with Eli, and I’ve stayed with Mia. We both realize how important it is that Eli NOT be shipped all over Salt Lake, or elsewhere, and that he remain in-touch with Mia and THEMBricks as a Family Unit.
Yea…. last night I wanted to punch the wall. I wanted to punch something. I just want to POUND the disease and clot and anything that is hurting my daughter!! ……. and I can’t.
I came home to sleep.
tbrick of THEMBricks