Downhill Slope

So today has been bad. Arianna had a bad night and kept desating into the 50's and her fever was eleavated, they continued with motrin and xopenex(breathing treatments). It seemed to help for a while but her o2 needs have now increased to 1.5 ltr and her CBG(blood gas CO2) came back at 57, not good. She is retracting a ton more and weezing alot. We have had the PICU docs come in to check her out, they want to try C-PAP here on the floor hoping to avoid taking her to the PICU.
She is such a fighter, but when she gets just too tired she goes down fast. I feel so lost, so helpless.

My Turn to Meltdown

I need to cry, and so I have almost the whole afternoon and this evening. I came home to be with Kenna and do a few things at home and I kept crying, thinking that I should not have left Arianna. I know I need to take breaks and take care of myself but it doesn't feel right. I am always hearing from people 'how strong I am' and how 'they don't think they could do it if they were in my shoes.' Well I say to them all, I had no choice, but I wouldn't want to not have her. All that she has given to our life is inmeasurable, and I thank God we have this much time with her. Still it always lingers in the back of my mind, today could be the day she leaves us. We are resolved to let her go when she can't fight anymore, if she can't recover and breath on her own it's okay. It has been this way since she was born, but now that we have had 19 beautiful months with her I plead with God to please let her stay, let her be healthy, to let her show countless others the miracle he created.
You maybe asking youself, 'why is she talking like this'. Well it has to do with the term 'heart failure', and how a radiologist 'sees' this in her chest x-ray, 'maybe'. The doctor overseeing her care tells me this but does not explain the true deffinition. To me I hear 'her heart doesn't want to work anymore, it's failed'. So I call her primary Dr and she explains that it means there is extra fluid bulid up, the heart is failing to get rid of it, they just need to help her get fluid balanced. I now feel a bit better but still want to cry some more, so I do.

I have decided not to return to the hospital tonight, I let Matt go instead, I really need to get a good nights sleep in my own bed. It is tearing me apart not be together as a family at home. I know that she will be in good hands, not the best, those belong to me, but I will trust that the Lord will keep her in his hands. I made sure to tell Matt all the things I want answers to, and told him to make sure that her nurse takes great care of her.

I shall now go have a big bowl of ice cream and go to bed. Thanks for the release.

Still Fighting

Her O2 needs went back up this morning, we had her down to .80 and she is now back to 1ltr. We went down for a CXR and her lungs look worse, but her blood gases are still good. We are having to suction her out a ton and it is thick. She still has a high fever, we just can't get it down. I am going to try and make it home today, I don't have my car and have to ride trax, we were brought it by ambulance.

My little Kenna is really missing her mom and her baby sister, I need to spend some time with her today.

Please pray for her and our family, we need that extra lift. I will try my best to keep you all updated.
Julianna

Our Turn

What a sad and crazy day we had yesterday. I took Arianna into her Ped because she had a really wet cough, a fever of 102.6, and her o2 need had gone up to 1 liter. We did a breathing treatment in office and it didn't do to much to help, we then went in for a chest x-ray. Arianna has pneumonia again. Her doc sent us to PCMC by ambulance, when we got here they did a VRP and CBC, she came back with a white count of 30,000 with a left shift, which means bacteria. Her VRP came back positive for RSV. I am not sure where we picked up the bug, but she has a triple whammy. They have given her IV antibiotics and her CBC came at 15,000 this morning. She is really cranky and does not want mom to put her down, when she coughs she cries. I feel so helpless. At least we are not in the PICU, they are so full here, we waited five hours in the ED for a bed. I can only hope that they can get her well enough to let us go home real soon, we can do everything but IV there and I can sleep in my own bed. Your thoughts and prayers would be greatly appreciated at this difficult time.

I will update when there is something new.
Julianna

Today We Laugh!

It has been so quiet and I have nothing new to post, so I will give you all a laugh about Utah.

FORGET REDNECKS; THIS IS WHAT JEFF FOXWORTHY HAD TO SAYABOUT UTAHNS!

If your local Dairy Queen is closed from September to May, you live in Utah.

If someone in a Home Depot store offers you assistance and they don't work there, you live in Utah.

If you've worn shorts and a parka at the same time, you live in Utah.

If you've had a lengthy telephone conversation with someone who dialed the wrong number, you live in Utah.

If 'vacation' means going anywhere south of Salt Lake City for the weekend, you live in Utah.

If you measure distance in hours, you live inUtah.

If you know several people who have hit a deer more than once, you live in Utah.

If you have switched from 'heat' to 'A/C' and back again in the same day, you live in Utah.

If you install security lights on your house and garage but leave both unlocked, you live in Utah.

If you can drive 75 mph through 2 feet of snow during a raging blizzard without flinching, you live in Utah.

If you design your kid's Halloween costume to fit over a snowsuit, you live in Utah.

If the speed limit on the highway is 75 mph -- you're going80, and everyone is still passing you, you live in Utah.

If driving is better in the winter because the potholes arefilled with snow, you live in Utah.

If you know all 4 seasons: almost winter, winter, stillwinter, and road construction, you live in Utah.

If you find 10 degrees 'a little chilly' you live in Utah.

If you actually understand these jokes and forward them toall your friends, you live in Utah.

Have a good and quiet weekend friends!

Quiet Time

Life is pretty quiet right now, dinner is in the oven Matt is not yet home and both the girls are taking a nap. So here I sit at 7:20 not knowing what to do with myself. I am so used to going 90mph that I can't think of any thing to do, not that it is so bad to have some time to decompress. I am just the type of person who wants to take care of everyone, even if they can do it themselves. When I was working(pre-kids) I was nick-named Ma, I just wanted to help out all the time, I had ladies in their 60's calling me that. So it's not any wonder that I want to reach out and help strangers that might be going through similar things as our family. I know that I can't do much considering all that I have going on at home, or what it would take to lug Arianna and all her goodies. I am just a nurturing kind of gal.

Well dinner is done and Matt is home, let's eat!

Can I Have A Tooth Please

So I have found the source of Miss Arianna's crankiness, she is teething. But it's not that simple, she is pushing in 8 teeth at one time, ooouch. It took her a very long time to get her bottom front teeth, I think it was September and she was 15 months. Sooo now she is making up for lost time and pushing in her eye teeth, upper and lower 1 yr molars, and 2 more bottom front teeth. Let's just say that Tylenol is our good buddy right now. Over all she is still pretty happy though, she just doesn't want to take a good long nap anymore, she never really cries unless it hurts something awful, like a shot or an IV, sometimes she will cry if she hasn't pooped in a good long while. I find it funny now that when any other baby is crying it takes me be surprise, I am just not used to it, Arianna barely makes any sound when she is screaming at the top of her lungs. I know I should feel lucky and stop gloating.

Julianna

Visiting Friends

So yesterday I took a break from the girls, I left them with their Noni(grandma). I took sometime to go visit some of my mom friends that have kiddos in the hospital, both in the PICU. Sometimes mommy's need visitors to come see them not just the kids. I first visited with Lacey, Jackson's mom, he is Downs and is having a rough time getting he seizures under control. I could tell that it was good for mom to have a break and just laugh a little about other things than the kids. I then went and spent time with Brynn, Alex's mom, I haven't seen them since the summer, that little guy has grown so much. We had a great time catching up on a the little things you just don't blog. I think the funniest part of my visit was all the nurses that know me and Arianna were asking where she was, like as in what bed space in the hospital, it was nice to say that I was just there visiting without the kids. I also went and donated blood, it is such a great gift to give, and it only took 1/2 hour to do. Think about it and then go donate.

Arianna has been a bit of a cranky pants today, I think she really just needed a nap but she did not want to go to sleep in her bed, I finally had to put her in the rocking chair, she is out cold right now. I just hope she will go to bed tonight without a fight. She is definitely turning into a 19 month old a defying what mommy knows is best, like napping.

Well I am going to go get dinner started while Arianna is sleeping. Please keep Jackson in your prayers, he really needs it.

Julianna

Here's The Story

So it has been a while since I last posted, this is going to be a long one.

Well to start off Kenna has been sick with a nasty cold, I am not sure where she got it, could be preschool, anyway 4 year olds are very needy when they a sick. I am trying my best to give her as much attention as I can, but it seems miss Arianna does not approve of this. One morning while I was trying to comfort a coughing Kenna, Arianna decided to find a way out of her rocking chair. You see it has a waist strap do you can't slide down and out, but Arianna loves to do back bends and arched her self over one side of the chair, I came to her room to check on her cause she seemed to be laughing and found her head first on the floor, her feet still in the chair, barely hanging on, she thought this was a fun new way to see the world, what am I going to do with this kid?
She still loves to pull her oxygen out of her nose, so I tried putting socks on her hands to make so she can't get a hold of it, but she still finds a way. I can see that she wants to do so much but her body just doesn't understand what her brain wants to do, she is such a smart little girl she just can't get the signals right.
We went in for her FEES study yesterday, and she did not do so well. She continues to aspirate even thickened foods. This is a good thing in one way, it means that Dr. Grimmer can not remove any tissue from her airway, so we don't have to go in for surgery anytime soon. He wants to wait until she is 2 to do anything. He did say the only other option to help the apnea spells is a trach, which he does not really want to do, he thinks that she has done so well in the past 19 months that it would be a set back. He is hopeful, and so are we, that she will grow out of the laryngeal malaysia, most kids do.
As for this mommy, I am really feeling the winter time blues, we are such an outdoors family and love to go camping and just be out in the sun and fresh air. We don't get to spend much time with friends and family for fear of catching colds, I have tried so hard to keep the kids healthy. I think I have done well to keep Arianna from the cold Kenna has, but I woke up this morning feeling really cruddy, who takes care of me when I don't feel good? I know I have let myself get a little run down, these kids are a lot of work and I don't get a lot of me time to just recoup. I am taking a daycation next Saturday, Matt got me a day spa package for Christmas, thanks honey! I hope that it will help me get back in the game. I am also going to try and get a new healthy eating habit, I seem to forget that I need to eat too. Let's hope for a good start to a healthier new year.
That's all for now Kenna wants me to go fix her Mac & Cheese for her breakfast, hey anything to get her eating works for me.
Julianna

What's New

Well not much has changed. Her lungs look just a little less cloudy and her right ear is pink again, so back on Omnicef we go. Her FEES study was changed to January 11th so that her speech therapist could be there. Other than that we are still plugging along.

So here is my new problem, Miss Arianna likes to pull her canula out of her nose and chew on it. It would be fine if she had the holes directed into her mouth, but they rarely are. The funny thing is she knows just what she is doing cause you can tell her to put them back in her nose or ask her where they belong and she will push them back in, sometimes, other times she will just blow you a raspberry. Little stinker. I just don't know what to do with her.