Home & More!

WOW - we've been home a week & it has flown by.  So much going on!

Here we are back last Thursday 10th, waiting to be discharged from the hospital.  Because her BUN was high and she had to stay on the blood pressure medicine and the lasix, they wanted her to eat and drink breakfast and lunch before they would consider letting her go home.

Well - finally by 4pm we were out the door with orders to have her labs/chest x-ray; appointment to see pediatrician the next afternoon, appointment to see surgeon the following Monday & appointment to see cardiologist at end of month!  

We get 20 minutes out of town and realized they hadn't given us the order for the video swallow study, which had been discussed most of the week that it needed to be done (that's a whole other story).  So, made a phone call and talked to the discharge nurse who told us that the pediatrician decided to just let our pediatrician order when we saw her tomorrow.  OK - at this point, it is just my best guess that she is aspirating fluids since LAST FRIDAY & we are still supposed to wait until Friday afternoon to even get the order.  So....I decided to call our pediatrician & she gladly ordered it so that we could get it done Friday morning and discuss Friday afternoon.

Guess what.....she is aspirating!  So, she is now increased to honey thick liquids and will begin swallow therapy next week.  (Because of my concern we had moved her to nectar thick liquids in the hospital, but I wasn't super impressed with the concern that was showed by the speech therapist at the hospital.  But I have a survey coming up that I will give them a lengthy explanation about this & the fact that she had to move rooms SIX times in a week!

So we make it home & Christopher had done a great job of taking care of the animals while we were gone....but he dyed his hair pitch black.  Just kind of weird.

I kind of touched on what happened on Friday above, but that wasn't everything that happened.  After getting home around 5pm, we gave her the night time medicine and she got to bed by 8pm.  Not too bad since she has to take lasix at night too.

The next morning was to be her very first shower & the first time the bandages over the drain holes was to be changed.  So I put her in the shower, she was tired, so she sat (which they said was ok, as long as the water wasn't up to the bandages & they weren't).

After giving her the bath, I started to take her bandages off of the drain site.  And much to my surprise & horror, she had a long string of tissue hanging out of one of the holes!  Yes, I panicked a bit, because I didn't know what to do with it, or what it was and I also didn't really want Amie to see it.  She kept pulling the bandage away (which is completely wet) as I am trying to get Darwin's attention for help.  Darwin came in just in time to help with Amie throwing up all over the place (probably because she was panicking because I was panicking).  We got her calmed down & I decided there was nothing I could do but take her to the emergency room.  The tissue was adhered to the wet bandage, it was flat and intertwined in the gauze cross mesh on that end and about 4 inches long going into her tummy.

So, we go to the ED and the ED doc looks at it and tells us it is subcutaneous fat that probably came out when they took the drain out (they took the drain out between two towels to keep Amie from seeing it).  So he cut it at the skin line & bandaged it with dry bandages.  She also was breaking out in a rash.  This we handled with benadryl and cortisone cream.

This picture was actually after the rash had started to get better, she was so miserable with the rash.  But as far as pain - she only had a headache a few times after getting out of the hospital & took tylenol a total of 4 times in a week!

So it was Mother's Day weekend that weekend.  On Sunday, we decided to let Amie go to Aunt Janet's house for a cook out.  Her and Kylee and Timmothy colored on the drive way with chalk.  Tim's comment was that Chris is a packer fan!  Of course I sent that to his facebook page and tagged him!  :)

Tim made me a cute little bag of Hershey kisses and a plastic spoon.  It says, "Dear Mom, A spoonful of love and a couple of wishes.  Hope you enjoy your Mother's Day Kisses.  Happy Mother's Day"  So cute!

And the child life specialist sent home a cute Mother's Day present of Amie's feet prints and hand prints!  Super cute!

The Monday after mother's day would have been my father's 69th birthday.  He's been gone a little more than 11 years.  It doesn't seem possible at times.  Anyway, as we were driving back to Peoria on that Monday, Amie needed to stop at the rest stop to go potty (lasix strikes again).  And as we are walking up the path, there are the most beautiful purple irises.  Purple irises always remind me of my Dad - he loved them.  He had planted them along the sidewalk of my very first child hood home.  I found out years later he planted them because they were his mother's favorite flowers as well. 

We get to Amie's surgeon's appointment & she had to have labs and chest x-ray first.  She did ok, because we had told her we were trying to buy an ipad.  We've been looking at them, the nook, the kindle & the nabi since Christmas time.  In fact, I ordered the Nabi in February (it's on the android platform and is specifically designed for kids).  But it was backordered and no delivery date in sight.

So anyway - we get over to the surgeon's office & she keeps telling me "I don't like Dr. Tuna".  And I keep trying to tell her he's a good guy and that him working on her heart will hopefully let her go out for ballet in the fall, etc.  Well - nothing worked.  Poor guy walks in and gets, "I don't like Dr. Tuna" to his face.  He actually laughed and said, "That's the most verbal you've been to me"!

So appointment went well, we get to stop the lasix at night, but still has to take it in the morning and the blood pressure morning and night.  She will see him again in June.

So - Monday night Darwin finally found the ipad we decided on (who knew there were so many choices).

And by the time I got home Tuesday night - this is what I see (and "If I were your boyfriend" is playing)!  Can you say completely over the moon happy!!

Also on Tuesday our new coach came in.  We love love love it!  But it dwarfs our living room!  Now we just need to finish the paint, trim and pantry & the downstairs will FINALLY be complete!!  :)

Wednesday night I get home from work & she has learned how to make the Justin Bieber app kiss her!  UGGGG!!!

Nothing exciting occurred on Thursday - but Friday was a big night!  Amie graduated from kindergarten!!

She is crazy about the messy bun look in her hair!  And she insisted on this shirt (yet again!)  even though I had about 4 different dresses that I would have loved to seen her wear tonight!  :/  She is so darn stubborn!!

So Friday was the first time she got to see her friends since surgery (she went to a practice earlier in the day for an hour or so & then at the program that night).

Here she is with one of her classmates, Evan.

They are all singing the alphabet verse song!  Super cute, but Amie didn't participate much in it.  But that's ok, because she probably isn't supposed to be stomping her feet and clapping too hard anyway.

Here she is saying her bible verse!

Time to come out in their cap and gowns!  Of course she had to have all the super silly faces!

Kindergarten class 2012!

Time to get her diploma!  Of course more silly faces!

Time to turn the tassel!

"Amie - smile with your grandma's"!  Nice!

So we get kind of a forced smile - because she much prefers the goofy faces and tongue pictures!

With our little graduate!

With Brother Tim!

So today (Saturday) we are two weeks and two days out of surgery.  Amie has only been out of the house for doctor appointments, and the trip to Aunt Janet's house & kindergarten graduation.  She is no longer under rules to stay home, but she is still supposed to not be busy, not use her arms for anything more than 5 pounds, no running, jumping, etc.  Oh it's going to be a long 4 more weeks!

This morning she ran errands with me.  We had some shopping to do.  She also had money burning a hole in her pocket!  Someone at work had told me they had Justin Bieber dolls at Big Lots - Yes they did!

What do you think - is this a hit?

Hopefully this will keep Miss Busy Pants occupied for a while!  She had $25 to spend from a card she got from everyone at work.  She LOVES tattos, Justin Bieber and the Ispy books (this is an Ispy for the DS) - great choices Miss Amie!

Well she bought make up at another store we were at and this afternoon, she gave us the spa treatment!  What do you think?  Is pink our color?

She is doing so incredibly well!  I just hope and pray that this is the last surgery until adulthood!  :)