No nurses = no sleep

I'm a little, actually more like a LOT amazed that my sweet girl can be so demanding even tho she doesn't do anything. *sigh* From 6am to 12am its something every couple hours...meds, breathing treatment, changing food bags, wiping drool, diaper duty(thankfully she holds it like she normally does...makes much less trouble for me) and physical therapy.

Right now I'm sitting here waiting for her breathing treatment to be done. The last for the day. She loves it...I think. I am feeling very frustrated that she's not more awake these days....I miss being able to discuss important things with her, like what to name the new kitty we have coming from my aunt. I have a pretty good feeling that the names I think she'll like are not what she would actually pick. She's much more creative than me....like when she named her stuffed horse Rango before we ever even heard of the movie. I have been getting some very wide open eyes in response to questions, but she's still very much out of it. Kinda surprising since she's on a lower dose of phenobarb than she came home on in March. I'm anticipating that we'll lower it after Mondays labs come back. Her twitching has seemed to lessen by miniscule amounts each day. Its most prominent in her shoulders and face. I really feel the face is due to her not knowing how to dispose of her spit because of the trach. She's constantly moving spit out of her mouth and I think if we can get the trach out the twitching will slowly cease...sorta like a nervous habit. Thats my hope at least. Unfortunately the trach isnt going anywhere until she's more alert. So I'm all for lowering her phenobarb. We've been on the same dose for two weeks and I don't think her seizures are any worse than before we lowered it last....I'd say better even :)

She's been looking really good lately. So pretty! We have fun doing her hair and she gets weekly mani/pedis from Aunt Carolyn. Tonight I was even able to get her to open her mouth a little wider and gave her teeth the best brushing she's had in weeks. A win for mommy!
We also have a great day nurse who picks up where I leave off...with massages, book reading and lots of chatting. I really wish I could clone the nurse...especially on these long weekends when we are on 24hr duty. Oh well.... Only one more day and then I get to sleep in my bed again for the whole week!

Please pray Averie starts to wake up more and her twitching continues to improve. :)

Survival

"I know I have seriously neglected to blog, but this first week home has been a whirlwind! First off let me say I'm so thankful for all the love and support from my family over the last couple months. Especially to those who took hospital shifts...to my mothers in law and Justin's aunt who were willing to lend a hand, to my dad for for driving my mom over every week and especially my mom who was able to relieve me sometimes for a couple days in a row, who advocated for Averie on the days I couldn't be there and who has been my comic relief many times. I am so grateful they all were able to jump in and learn to care for Averie and her new needs.  With out them and all the words of encouragement and continuous prayers from all of you we might not have survived our hospital stay.  Certainly I wouldn't have survived without my husband, Justin. He has stood by me thru all of this, giving me so much support and constant optimism on the days I didn't think could do it.  I don't know how I could feel more blessed to know my little girl means so much to all of them!

Ok...enough mushyness...hard to type when I'm crying...

Like I said in the beginning, we've survived our first week at home. Last Sunday we were released after Averie's labs came back negative for growth...it meant we had no reason to wait till Monday for pic line training since we wouldn't need IV antibiotics. Our wonderful nurses decided to try and get us out and all of a sudden we were in the car on our way home. It was seriously so fast...well I guess it DID take forever to load all Averie's stuff and install her carseat, but in terms of hospital discharge it was fast. I wasn't about to say we weren't ready for fear that each second spent in the hospital was exposing Ave to more infections.

We came home to Averie's room all ready for her to be moved in. We spent the first day getting all her boxes of supplies put away. A months worth of sterile water, food bags, humidifier tubing, suction catheters, formula, trach care kits and much more. I got it beautifully organized and the next day I had to make room for more. *sigh*

It took a few days, but by the time Tuesday came we had a pretty good routine down and I was able to walk our first nurse through it and relinquish some control and rest. ( & celebrate our 1st wedding anniversary with a glass of wine from our wedding! I had been holding on to it all year! A yummy St. Chappelle Huckleberry!) We had 24hr care the rest of the week...something I'm not sure I love yet. Nights are essential of course...because on the nights I've got no nurse I don't sleep for much more than a couple hours at a time. Day nurses are ok for now...since we don't have her wheelchair yet, but I think that'll phase out a bit as Averie recovers. So far I like our nurses which is great.

Averie's first couple days home were a bit rough. She hit withdrawls from a phenobarb dose reduction on Tuesday and was very twitchy and sick looking. Later that week she had one day of throwing up and Thursday  night we ended up in the ER because her tummy had blown up like a balloon. We thought it might be a blockage, but xrays showed she's got a lazy colon. Probably from all the phenobarb and too much miralax during our hospital stay. Since pooing it up in the ER she's been doing great and being pretty regular now. She's spiked a fever a couple times, but all in all its been pretty easy to handle.

Wow reading this shows me why I feel like I was hit by a bus. Averie's keeping us on our toes around here! I'm excited to see her more awake each day as the phenobarb levels slowly drop...those big brown eyes and all those pretty eyelashes are a welcome sight! Her seizures have been improving too which is great and we get to see her relax much more often now. My favorite times are when she's falls asleep and her body becomes still. I know those times she's laying there healing!

Waiting to go HOME!

Averie's been doing awesome. Not much change so I haven't been updating as often. We've spent the last few weeks trying to recover from mrsa and learning to care for her trach and gtube. Averie's phenobarb level got as high as 84 , with no significant reduction in her seizures. So we have been letting it drift back down. Our goal is to find the best seizure control with the most consciousness. We haven't made it there yet....but seizures are the best controlled since this all started. Most frustrating is that the seizures are primarily in her face. How come they moved? Your guess is as good as mine. Her feet barely move now and her hands are very relaxed most of the time. I can't honestly say if its the phenobarb or the EPI ...my gut says its the EPI. I am learning to have great amounts of patience these days...oh, except with shitty doctors!!
Couple days ago one of the neuros wanted to lower Averie's phenobarb even more...she also wanted to skip a dose so we could get Averie's level to 60. I said I preferred to lets it drop more slowly.. Drift down so its easier on Averie's body. Since I didn't agree the neurologist got pissed and was acting like a child. Stomped off and everything when my mom explained my preferred method (I was out sick)...lol...needless to say she'll not be working with Averie any longer!!!  Its pretty amazing how childish grown adults can be!

So now we are just waiting for a nurse to be hired so we can take Averie home! I'm very confident in my ability to care for her, but I do need relief at night. I really feel if we get Averie home she will recover much faster. I can't wait! We have a hospital bed ready and have a cool fuschia colored wheelchair ordered for her ;) I'm soooooooo looking forward to routine...and family time...cooking real meals...baking bread and I'm really looking forward to my bed every night!

If you want to help, please continue to pray for Averie's seizures to stop and for a nurse to be hired!