Thursday, January 30, 2014

Home at last

We made it home just in time as a snow storm is moving in.  Alex is cozy playing with her balloons and cuddling with her little friend Sir.  We couldn't be more thankful to finally be home.

Adios Children's

Alex was discharged this afternoon and feeling so much better.  
We are so excited to go home! 

Wednesday, January 29, 2014

Guess who's here?

Alex told everyone who entered her room today that her Nana was coming to visit.  Then she would ask, "do you want to meet my Nana?"  She's definitely feeling so much better and telling everyone about it.  She weaned off the heated high flow oxygen today to regular oxygen and has not needed to be on bipap all today.  If all goes well tonight, we'll go home tomorrow!!  

Tuesday, January 28, 2014

Dance Party

So what do we do at the hospital all day and night?  We have dance parties of course.  This is what we've decided to call her vest treatments that shake her up and today we decided to add some music to our party.

Alex had a great day and did 2 four hour high flow oxygen trials.  She is getting stronger every day and and has really turned a corner.  Next we work on weaning her off of the heated high flow oxygen to regular oxygen.    

Moving on up

Yesterday was very busy and started off with a rough morning.  Alex needed more respiratory support overnight and during the day so they were considering keeping her in ICU.  She improved a little in the afternoon so we finally moved to the floor yesterday (Monday) evening.  She has copious secretions and mucous so she's getting a lot of deep suctioning, vest treatments and continues to get extra support from her bipap and heated high flow.  We didn't get much sleep last night because her oxygen saturation kept dropping so we are hoping to make some big strides today while she is awake.  

Sunday, January 26, 2014

Nite Nite

All Smiles

Alex is having a good day and is happy as can be with her new Cinderella Barbie.  Her nurse made sure she got an extra special surprise for being the sweetest lil' patient and doing all of her respiratory treatments. She is back on track with her high flow oxygen trials and tolerating almost two hours at a time. Because of the fevers yesterday, she was only able to do one trial.  She woke up with a low grade fever this morning but hasn't had one the rest of the day.  They aren't quite ready to transfer her out of the ICU but we are really close and hoping to move to the floor tomorrow.

Mommy was able to sleep in her own bed last night and be home with Daddy and Ryan for a little while this morning thanks to Cat who stayed with Alex last night and my grandma.  Jimmy came down with an illness the same time Alex did, over a week ago and finally went to Urgent Care this weekend since he wasn't getting better. He's on antibiotics now and they think he has the flu based on his symptoms so he hasn't been able to visit Alex. It's always hard being separated and I'm thankful I was able to spend time with them and give them big hugs. It's easy to feel isolated, not step foot outside for days and feel delirious from lack of sleep when you are staying here.  Looking forward to going home and the family being together again. Situations like this always put things into perspective. We really appreciate all of the love and support we've received.  We'd especially like to thank KK and Katie for bringing us snacks and a home cooked meal tonight and Cat for sleeping at the hospital on her night off.

Saturday, January 25, 2014

A lil' bump

As a nurse taking care of kids in similar situations as Alex, I often tell parents that the healing process is typically not a straight road, and more like a rocky road with bumps and ups and downs.  Alex has hit a little bump in her recovery and is spiking fevers again.  We are holding off on her high flow oxygen trials this morning and letting her rest and working on getting rid of the fever.

She's been in good spirits and was up in her wheel chair a couple of times yesterday.  She even crashed my little corner space in her room last night and wanted mommy to hold her.  All the nurses, doctors and respiratory therapists love her and say how sweet she is.  She says please and thank you and asks, "what's your name" when anyone comes into her room.  She truly has the sweetest little soul.          

Friday, January 24, 2014

Things are looking up

Alex did 3 high flow oxygen trials off the bipap yesterday so definitely making some progress. She tires out after about an hour or so and will need to tolerate the trials a little bit longer before she can transfer out of the ICU. She's been awake and talking more and playing with her balloons.

PS - Thanks to our amazing Michigan family (Christy, Brian, Luke, Dorothy, Maria and Buddy), Lauren & Nathan, and Jenene for our special ballon deliveries.

Morning Sunshine

Woke up to blue skies and a beautiful sunny day. Alex had a good night and we were able to get some much needed rest. We appreciate all the love, texts and offers to help.  Means the world to us.  

Thursday, January 23, 2014

From Ryan

Ryan goes to preschool and told her teachers that her sister was in the hospital and the class made her this card.  Ryan is such an amazing little sister and always looking out for Alex.

sisterly love 

Our sleeping beauty

Dreaded respiratory season

It's ironic that the last time we posted was when Alex was hospitalized last summer.  Seems lately that's the only time our life has slowed down enough to blog. Last Friday Alex came down with a respiratory illness and she started going downhill by Sunday afternoon.  By Monday her condition deteriorated quickly and she ended up in the ED at Children's via ambulance.  I was working so I was able to meet her in the ED when she arrived. She was admitted to the PICU with a confirmed case of H1N1 flu and here we are. It's day 4 and Alex is still needing a lot of respiratory support.  She's on continuous bipap through a nasal mask (same one she wears at night to help keep her lungs open) and we are doing small trials off the bipap with high flow oxygen through a nasal cannula. Once she can handle more time on the high flow oxygen, we'll be able to move out of the ICU to the floor.  She is very weak and has been sleeping most of the time but we are thankful she remains stable and is getting a little bit better each day.