Monday, July 11, 2011

Can We Go Home Yet?

For real.  There's nothing worse than being in the hospital with a baby who feels wonderful.  She is so full of energy, it's crazy to me.  And like everyone said, we didn't know just how sick she was until her heart was repaired.  Now she wants to be awake, playing, talking, etc.  Marlon and I have had many sleepless nights here.  One would think having a baby less than a week out from open heart surgery that I would have a lot of time to post updates.  Not so much the case.  Kennedy NEVER sleeps.  It's getting impossible to amuse her in a tiny room, when you can't walk 6 inches from the bed because of the wires from all the monitors. 

We were supposed to be going home yesterday or today.  The ARNP came in and went over all of the discharge paperwork FRIDAY night.  Even made us go get the prescriptions filled.  Everyone warned me not to get my hopes up about going home, and I was perfectly fine with being here as long as we needed to be.  Until now.  The ARNP who went over our discharge paperwork told us all we needed to do was get her lungs clear and off the oxygen and we could leave.  They started her on a  new medicine on Friday, to help clear the fluid out of her lungs.  Unfortunately the doctor ordered it IV, but it was started orally.  But with the IV dose.  The doctor realized it during rounds Saturday but we essentially wasted 36 hours before she could be given the correct IV dose.  Then last night the nurse only took her off the oxygen for 5 minutes.  When it dipped a little, they put her back on.  The doctor said this morning during rounds that it wasn't a fair chance, and she should have left it off longer to give her body time to adjust.  So another day wasted.  She came off the oxygen and is doing wonderful.  But now they want to keep us until the end of the week to change her medication from IV to oral.  WHAT???  No one ever said that, and WHY does it take 5 days?  I'll be speaking with the ARNP who was planning to discharge her during rounds today.  Today also means a new doctor for the CVICU and a new cardiologist.  Another one whom I've never met.  I suspect I'll be putting a call in to my cardiologist today as well.  On Saturday the hospital cardiologist said she called Dr. Nardell and that she was on board for a quick discharge once the oxygen was discontinued.  They even did the echo on Friday already for her discharge.  The ARNP went over all the findings and said it was completely normal for being post-op and that they would repeat at 2 weeks when we saw Dr. Nardell for her follow up.  But now they want to do another one today?  I don't get it.  We've seen nothing but improvement.  I'm not willing to pay for a bunch of unnecessary tests, or stay here even longer if we don't truly need to be.  I won't even go into the fact that I heard someone say, "This is great, we're almost at half capacity" last night. 

I finally got a swing and a bouncy seat for her for her.  Of course, it doesn't swing.  So I spent a few hours yesterday afternoon pushing her in the swing.  Oh, and the mobile doesn't turn on its own.  So I also spent a few hours spinning the teddy bear mobile.  Kennedy was looking at me like, "Are you kidding mom?  I'm supposed to be happy with this instead of my sheep?"  The bouncy seat has no toys on it.    But at least it's somewhere else for her to sit.  It's just a matter of keeping her entertained with what we have.  I also had daddy go to Toys R Us yesterday and bring back more toys.  And bring the play mat from home, which is now on the bed.

As if trying to keep her entertained all day isn't hard enough, there's the whole lack of sleep issue.  Since she can't use up all of her energy she's not really napping, and doesn't go to bed until around 11pm.  Then the nurses are in all night.  Hr monitors don't pick up the right signal, so they are constantly going off, and the nurses are coming in to correct them.  Then there are the IV lines.  Every time one finishes it beeps.  Loudly.  Until someone comes and shuts it off.  They also wake her up to change her diaper.  Ridiculous.  Just let the poor baby slep!  Because you aren't the one dealing with trying to get her back to bed.  By the time I get her back to sleep, they come in again.  Between being sleep deprived and bored, Kennedy is miserable most of the time.  I just want my happy baby back!

Snuggles with mama!


Excuse me mom?  Why do I have socks on my hands?

Kennedy sent Grandma to the grocery store for a cake for Mommy's birthday!

Kennedy doesn't look so thrilled about the socks on her hands.  At least they had monkeys on them.

Mama Snuggles!!!!!!  FINALLY!  (I was so afraid of hurting her incision).

Looking at Pinky!

Mom...who is this crazy nurse lady?  And why is she blowing bubbles at me?  (We loved Devra!)

Just chillin' in bed.

"WTF?  Where are my sheep and why doesn't this thing move on its own???"

Drastic times call for drastic measures.  Even if it means the play mat on the bed.

Kennedy has her purse, and she's ready to get the heck out of here!


  1. This is crazy. I was fully expecting a discharge post! I can just imagine what you are feeling right now. I hope you keep on them to get you out of there. Every day she spends there that is not necessary is another day she could possibly get sick (you know...from the real sick kids that are there). I remember having it out with the doctors on rounds about that...the hospital is for sick kids and I don't want mine getting sick when she didn't even need to be there.

    I am definitely saying a few extra prayers that she is released really today. You all will be much happier at home and she will recover so much better.

  2. She is adorable!!! So frustrating being in hospitals on the weekends. It is never the same - they don't let people leave on weekends even if you could. Hope the next post is saying you are home.

  3. Your commentary is dead on...sending thoughts of discharge and hope that these people will talk to each other so the right hand knows what the left hand is doing (i.e. get home soon) Aviva sends kisses and says, "come play with me"

  4. Uber frustrating. Hope you get to go home soon. It's crazy seeing what your baby can do without having to work so hard just to pump blood. FYI, our daughter had her OHS 3 months ago, and had an odd sleep schedule with extra crying for a couple of weeks. Not sure if it was pain or what, but I think it's good to know that it's normal. (I've heard that from lots of other moms too). While our girl definitely is fussier than before (probably due to the energy she now has) that fussiness subsides.

    Hope all goes smoothly and you get home with your lovely girl soon!