Back in the hospital

 

I don't have a picture of Mira, but here's her empty bed, because she's back in the hospital AGAIN. Starting right around Christmas, Mira's been just not great. She was in the hospital for a week or so at that point, but not with a clear diagnosis.

She's been set to have a surgical procedure for a salivary gland ligation (basically stopping her from producing as much saliva because she has a hard time managing liquids, and there's always the risk of aspiration, so this would help to mitigate that.) three times now and has been hospitalized within days of when the surgery was supposed to take place. She also has an infected ear tube, so they're going to remove that hardware at the same time. Except, for the third time this year, she's not, because she's hospitalized instead.

As is often the case with Mira, you know something is wrong, but you really don't have any solid idea of what. This time her hands and feet were swollen and she was having trouble keeping her oxygen levels up and she as having some issues with high muscle tone and high heart rates. So the list of questions/possibilities start going through your mind. Pain from her dislocated hips? gall stones? pain from the infected ears? aspiration pneumonia? neurological/seizures?

Thankfully Gillette has a quick-care clinic we can go to that avoids the emergency room and has doctors and nurses who know Mira. They were really booked today, but managed to squeeze us in between other appointments. First stop was to get some blood drawn for labs, then in for a chest x-ray, then back to the room to wait for the doctor. Labs came back indicating some type of infection (but is it in her ears or lungs or...?) x-ray came back looking worse than some, but the radiologist said there was not indication of aspiration or generalized pneumonia (so why is she having trouble keeping her oxygen levels up without the help of oxygen or her bipap machine?) Blood levels related to liver function are quite elevated (not the worst they have ever been, but definitely quite high) which could point to there being issues with the small gall stones that we know she has. However, by this time it was mid-afternoon and there was not time for her to be off her feeds long enough to get in her for an ultrasound before the end of the day, so that is scheduled for tomorrow morning.

So what do you do in the meantime while her respiratory rate is in the 70's (normally in the teens to 20's) and her heart rate is getting up to 170's (normally 50-70) and she is stiff as a board because of her high muscle tone and none of the tricks for rubbing her hand or back or neck are helping her to calm down?

We discussed with two providers (one who has never seen her before because now that she is 19 she on the adult unit and one who has been seeing her since she first came home) and decided that we would start her on an antibiotic (that would cover ears and lungs) and then give her a small dose of oxycodone to see that would help her to calm down, which would lead us to believe that pain is the source of why she is getting so worked up. If that didn't help, then we would move to valium. She got the oxycodone at 4PM and it was not until 6PM that her heart rate dropped below 100 and stayed there. Seems like the oxycodone should have taken effect quicker than that, but maybe not...either way by the time I left at 7PM, she was resting peacefully in bed with her heart rate around 70 and her oxygen levels in the mid-90's and respiratory rate in the 30's. 

Still no solid answers, but it was really nice to see her calm. I spent three hours just holding her on my lap and to start with, she was like a rigid balancing beaming tottering from side to side over my legs. Slowly she began to relax and was able to just lean against my chest and relax.

Back deck and porch lights

Matt had some time to work on Friday this week, so the progress is a little bit more impressive for the week-end review than it has been for the last few weeks!

Coming around the back of the garage you can see the back deck starting to come together. 

He's working his way back toward Bobbi's bedroom windows. The hope is that this is an outdoor space in the shade that Bobbi can use when the weather is nice. We are planning to have the deck flush with grade on two of the three exposed sides, and at one of those edges we're going to slightly relocate a section of our raspberry bushes so Bobbi will be able to go outside and pick her own berries like the rest of us can!

A wire we'd been wondering how we were going to handle ended up falling RIGHT between two boards!

While Matt worked on deck boards, I trundled dirt from the stock pile in the east yard over to the deck edge. We'll need some rain (please!) to get things settled in properly, but a first pass is a good thing. Every little bit helps, right?

We've only been picking up as many deck boards as we can fit in our vehicle, and have to make one more trip before we'll have all that we need, so when Matt ran out of boards, he went up front and got the light fixtures properly installed on the overhang over the main entry! Yay! I'll have to get a photo at night sometime - very warm and inviting.

He also got a little further on  the front deck. Now we're just waiting to order the grate for shoe scraping (and for access to the well pump, which is under the deck! Funny how the depth of the overhang is also contingent on being able to get to that well when needed!)

In the evening when the littles were in bed, Matt and Rinnah and I came back out to make a few more loads of dirt with the wheelbarrow. Here they're standing up on top of the pile pushing dirt down to loosen it because the dirt mound is pretty well packed after sitting there over the winter!

 

front deck

It's amazing what Matt can accomplish in an afternoon! He had a meeting in the morning, but then got home, ate lunch, and got right to work. He started with pulling up the scrap OSB we'd been using all winter as our temporary surface.

Before I left for the afternoon, he'd gotten the perimeter board installed, and had started a few deck boards.

Looking out the new kitchen window...progress is being made.

And when I got home, he'd gotten it all the way across the door, so it's fully functional! The rest will wait a bit as we're getting a removeable grate for part of it, and we haven't even ordered that yet.

 Went inside and found a surprise...Krassimir was ASLEEP on the chair in the dining room! (He loves to climb up with a few toys and sit up there in the afternoons.) But that boy NEVER naps! Still not sure what was up...he's not sick, nothing out of the ordinary in his schedule...must have just been the lovely sunshine shining down on him. :)

Still something sweet about a sleeping baby, even if your "baby" is getting close to 21 years old! 😍

Soffit!

 The weather is getting pretty decent here in Minnesota, and Matt and I got a chance to go out (between a public health nurse meeting and a client meeting!) and start putting up the soffit material on the overhang over the new main entry!

I am very useful as the holding end on the second ladder.

Once we got to the shorter pieces, Matt's all good on his own.

And by the time supper rolled around, he'd gotten the last board up. One small part done.

Leah's track meet

Leah's running on the track team this year (as a senior, having never done it before, but close to 70% of the senior class decided to join track to get one last hurrah together!) and it just happened that the one meet closest to our house also happened to be the most gorgeous day, so we *all* went. (Even Owen showed up at the beginning and overlapped with some of us, though had to leave before Leah ran.)

Krassi does NOT look thrilled at this moment, but in general he was having a pretty good time and enjoyed the cheering. Mira is next to him, shaded from the sun by the bag we have her suction machine in. Bobbi was there only because Matt had to run mid-way to pick her up from work, but she stayed in the van...

Leah's by no means a track star, but she did run a personal best in the 800 meter with us all there cheering her on! 

Getting the whole crew out for any event is daunting, but days like this make it so worth while, and I know it means a lot to Leah to have the whole family there. :)

Easter afternoon

 While Krassimir's favorite place to spend his time is the floor, it did make me laugh to see 50 % of the children all laying on the living room floor Easter afternoon! Leah's napping, Rinnah's dozing, Gloria's reading a book, and Ebs just thinks he might as well join the pile!

Rinnah and Mira

 Rinnah's preferred location for practicing her cello is right next to Mira's bed. Yes, Mira's deaf, but those deep, rich tones are produced by a deep, rich vibration, and her hope is that Mira can *feel* the music.