April 12, 2011

Hailey and her family spent their first night back at home last night!  After passing her swallow study at the hospital on Monday and being allowed a "regular diet" again they discharged Hailey!

She spent the evening relaxing with her brothers watching TV!  First time they've been able to do that in a month!

After waking up this morning in their own home, in their own beds, and relaxing to their own coffee, Jen and Dave got busy scheduling Hailey's therapy.

Today Hailey had Occupational Therapy. The Therapist said she shouldn't have even read the notes the hospital sent because everything they said she couldn't do then, she's already doing now! Hailey is impressing everyone she comes across!

She'll also have Physical therapy.  They are looking at therapy 3-4 times a week at this point here.  Hailey is already scooting herself across the floor on her butt and crawling on her hands and knees to get places.  She still needs help going from floor to couch or vice versa and obviously can't walk or anything yet, but she's working those muscles so it will be no time at all till they start getting their strength back.

Can't wait to see the progess she makes as she makes it!

Hailey and Jen and Dave are on their way HOME!!!!!! Hailey has officially been released from the hospital!!!!!

Still lots of therapy and rehab in her future but she's going HOME!

April 8, 2011 10:48pm

Hailey was moved to the regular pediatric wing last night!!  In this wing of the hospital she has no monitors on her and nothing keeping her in the bed :)

Jen took Hailey to the play room today to get a few toys to bring back to the bed for her to play with. They brought back a farm toy and pretended to talk to each other with Jen being the cow and Hailey being the dog.

Therapy came by and worked some more with Hailey today. Therapy is custom making Hailey a pair of boots to stretch her achilles tendon and strengthen it.

More therapy tomorrow.

Until then I'll leave you with a picture of Miss Hailey getting ready to watch Dora :)

Ahh I just wanna squeeze her!!

April 7, 2011 12:37pm

Look at this beautiful girl!!!!

No more feeding tube!!  IV's are out!! She's even in her own PJ's!!

And look at that smile!


"Family meeting" today at 1:30pm (Eastern time) to discuss the next steps.  Let's hope Jen and Dave can take their little girl HOME!

April 6, 2011 11:09pm

Hailey is working really hard at therapy each day.  She's getting stronger and stronger.  She's being allowed to have a "soft food" diet now instead of a "pureed diet" and is allowed a thickened juice box which is like the consistancy of maple syrup.  She still has the feeding tube until she can take in more liquids. She's receiving pediasure to supplement her diet at night.

Jen and Dave have a meeting with her doctors tomorrow to discuss Hailey's rehab placement.  Jen and Dave are really pushing for outpatient rehab for Hailey after being discharged from the hospital.  The doctors are really pushing for inpatient rehab.  Having her do inpatient rehab is not an ideal situation for the family, so pray they can sway the doctors to see things their way tomorrow!

Hailey's immune system is pretty much gone and they've given her an infant roomate who we've overheard is there with the flu!  How the hospital can put someone with a compromised immune system with someone who is sick with the flu is insane!  Hopefully they can get Hailey either a private room or at least change her room mate to someone who isn't going to compromise Hailey's immune system more than it already is!

Lots of mail came to Hailey's room today and made her and her mom smile!  Love all the love and support everyone is sending them!  Such cute cards and gifts!  Thank you SO much to everyone.   I told Jen pretty soon the mailman is going to have to carry a bucket with him to deliver their mail :)

April 5, 2011 6:15pm

Therapy came by today and decided to bust Hailey out of her hospital room for a little trip outside the PICU to the place they call the "forest".

She looks SO good without those tubes and wires!

Her immune system is still pretty much gone, so she had to wear a mask, but even with the mask you can see her smile :)

April 5, 2011 9:38am

Last night was Hailey's first night in intermediate care instead if the ICU!  Hailey was also allowed dinner last night!  She ordered beef and mashed potatos and gravy and peas.  She's on pureed foods, so it was surprising that although gross looking, the food looked so "real".

Jen stayed with Hailey last night and had said last night:

Nothing makes you jump from a dead sleep faster than when a monitor starts beeping. Initiate panic when it's flashing "Brady" by her heart rhythm. Found out this means she's in a deep sleep so her heart rate is a little low. No big deal. Someone tell my nerves to calm down!  After a few times of it going off and no one coming in I stepped out and asked and she just said her alarm settings were probably higher here than in icu and the nurse lowered them from the desk. That didn't go off again. Then her respiratory rate kept going off ALL night long! Saying 9 breaths a min. That alarm is set at 12.  Nurse said the chest things aren't great for someone who moves. It would hit 9 then jump back up to 20. If you remember the Drs in icu kept saying that monitor count wasn't accurate. I sware I got less sleep last night from the monitors in this hall than I did from nurses in the icu.

They are supposed to be repeating the swallow test today.  Lets pray for Hailey to be able to tolerate liquids so we can get that feeding tube removed!