Rachel Nyberg's Website
   

Saturday 
Rachel's feeling better, she even tolerated her stander for an hour today. We watched a bunch of old videos and we had Rachel watch movies of when she was a baby. Some of them I didn't remember as well so it was really fun. Even the first therapy videos we did were almost a year ago. She was a lot pudgier and littler then, she really is starting to look more and more like such a big girl!

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Getting better 
Rachel is a little better today, she's smiley and needs a little help from the oxygen. Hopefully she'll be strong enough next week to go back to therapy and school.

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Dr. Visit 
We just got back from the Dr. and he said that we should expect that it will take her a while to get over this. Normally people who get pneumonia will have a cough for weeks. Then it will start to look a little worse when all the gunk in her lungs finally breaks up and she's able to cough it out. It takes quite a while for the lungs to heal. So that's good to know that this is somewhat expected and we shouldn't be surprised that she still needs some supplemental oxygen.

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Still Sick 
Please keep praying, because she hasn't kicked this yet. We're going to go see her Dr. and maybe get more x-rays of her lungs. She's still on a little oxygen and she's had about 4 days of antibiotics. Luke's on his own today so I might go home early from work and we'll take her to the doctor. It's only 9 am now so we'll see if anyone can come in.

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Still not feeling too great... 
Rachel is still pretty sick. She had a really good nap from 5pm until whenever she woke up... sometime after 9pm when the nurse got here. But then she needed a lot of suctioning and a little help from the oxygen again. At 1 am her nurse gave her a nebulizer treatment. When I got up she was trying to get in a vest treatment in between all of her suctioning.

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Better so far 
Rachel needed a lot of suctioning today but she seems to be doing much better. She's sleeping now and I turned off the extra oxygen and she's still doing okay. Hopefully she'll have a good night.

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Okay night 
Rachel had an okay night. I put just a little oxygen on her to help her out a little bit and a nebulizer treatment at 3 am. Her nurse gave her extra vest treatments and her lungs sounded a little clearer a couple of times. It's so nice to be home and have some one taking care of her that knows her. It's also great to have a home care company that's very familiar with all of this respiratory equipment and treatments. Please keep praying for her to be well soon, she looks better than before but she's still pretty sick. Thanks!

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Home again, home again, jiggity jig . . . . 
Rachel seems very happy to home. We have more oxygen tanks and a nebulizer. As back-up for the O2 tanks we have an oxygen concentrator that filters out everything but oxygen out of the air. We won't normally need them but it's nice to have them tonight since her lungs haven't cleared up all the way yet. I'm exhausted :o but I just wanted everyone to know that we're home, she's still sick but she's looking better.

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Pneumonia 
Last night Rachel had a pretty labored breathing so her nurse had oxygen on her. Even then her oxygen level wasn't the best so this morning we brought her to the ER in Duluth. (Since it's a Sunday and the clinics aren't open.)
All she really needed was some antibiotics but when we tried to call her doctor we were told to bring her into the ER. Sigh. So we packed up the van and off we went through the ice and slush. Thankfully the roads improved the closer we got to Duluth and we evaded the 4 inches of snow that hit later.
Rachel's going to stay overnight in Pediatrics so they can give her antibiotics by IV tonight and tomorrow. The only thing that gets frustrating about spending the night in the hospital is that we don't have a nurse or even an aide to watch her 1:1. So Luke's spending the night there alone since I have to be at my parents to feed Kaleigh. (The stinker still doesn't take a bottle.) Rachel hasn't thrown up in a while and they do have a monitor that will alert them at the nurses' desk if her oxygen level dips but even if they immediately ran from the desk to where her room is they wouldn't get to her in time to suction her. Hopefully she'll be so tired out from the busy day that she'll sleep well all night. All day she kept trying to fall asleep but we had to keep moving her and messing with her.
All the peds nurses still remember her, I'm suprised with how few of them I remember. I suppose everything was a blur back then. They couldn't believe how tall she's getting and how she looks so much older. Her hair is also darker and long, long, long. (Rachel was a little peanut before and the Pediasure has so much nutrition in it that now she's 90th percentile for height and weight. She used to be always in the 75th percentile.) Rachel should be discharged sometime tomorrow after a second dose of antibiotics by IV.
So anyway, um, Happy New Year everyone! ;)

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Saturday 
Rachel's still under the weather with an upset tummy and is running a temp if she doesn't have any tylenol or ibuprofen. Kaleigh isn't sick, after her amazing gastrointestinal pyrotechnics yesterday morning she was fine.
We now are officially fully staffed! I think for the very first time... We have three LPNs and three PCAs (four if you count Luke's mom, she's our back-up but not on the schedule). We never had more than two PCAs before. So now if someone calls in sick, there is more than one person to call to fill in for them.

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Sick babies 
It's still pretty early but I think both Rachel and Kaleigh are sick. Kaleigh seems okay now but after I fed her this morning she threw up everywhere! Luckily I took the day off yesterday. Originally I was thinking that I should get some more sleep or I might get sick. I was also thinking that I should help out the new PCA who's never taken care of Rachel when she's this sick. But the PCA isn't here today so it was an extra good thing I stayed home! So I'm just hanging out in Rachel's room today. Even typing this is taking a little too long, I've had to run upstairs to suction her about five times while writing this... better go!

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Sick again? 
Or she might still just be sick from before. She's throwing up again and looks pretty miserable.
She was okay during Christmas and it really wasn't too strenuous on her, we had a pretty relaxing Christmas. We got to see family this year but she still kept up her schedule of falling asleep by 3 or 4 pm so if we opened presents or tried to do something after that time she was zonked. Bill and his family stopped by on the Saturday before Christmas. It was really fun to see them (if you guys could e-mail me some pictures that would be great!) and after we all went downstairs and Rachel was still upstairs she started "complaining"- once we brought her downstairs with the rest of us she didn't make a peep.

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Kaleigh Pics 


Here's Kaleigh in her Mad Bomber hat.


Here's Kaleigh doing a good job holding her head up.

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New Puppy 
Luke came home with a new puppy yesterday, with all we have going on I'm not so sure if I'm sold on the idea of two dogs. (We already have Bailey.) But Rachel LOVES the new puppy! She reached her hand out to pet it and was doing a great job tracking it with her eyes. She has the biggest grin on her face when we bring the puppy in to see her.







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Communication Board 
The other day Rachel came home from therapy with the beginnings of her communication board. She likes to bounce on one of those big therapy balls so on the piece of plexiglass are two squares of paper. One has a basic picture that is a big person standing behind a little person that is sitting on the ball. The ball is colored in to match Rachel's ball and it says "Bounce" on the square. Then lower on the plexiglass is a picture of an arrow pointing away from the ball and it says "Off". I'll try to get a picture of it and Rachel bouncing on the ball when I get the chance. So if we hold it up for Rachel to see and she looks at the "Bounce" she gets to bounce on the ball. If we show her the board and then looks at "Off" then she gets to get off. They also sent home other words with illustrations like book, turn page, blocks, bed, stop, blow bubbles, and a few more. Check back to this post later when I eventually post the pictures.

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