Thursday, January 27, 2011

We're adjusting

I felt like a crazy person at the hospital on Tuesday.  When they told me we weren't going to get discharged because they weren't going to be able to deliver our at-home IV meds until the following day (due to a hospital error), I really flipped out.  I told the poor resident who had to deliver the bad news that she should be the one to tell my 3-year old that he can't go home because they made a mistake.  I told the social worker who was sent to calm me down that we refuse to pay the hospital for the extra night, regardless of whether or not it would be covered by insurance, because I wanted to hold them accountable. I asked them to deliver a message to the woman who was responsible for the error that SHE should be forced to spend the night in the hospital unprepared, and that if she has any children that one of them should be forced to join her.  If only she realized how much just one more night affects us, those kinds of mistakes wouldn't happen. 

On top of it all, our last night in the hospital was a terrible one.  Our new roommate was an older boy who was there alone.  He has been fighting the fight for a long time now, and his Dad left to sleep at home because he seemed to be doing really well.  By midnight, he was crying out in so much excruciating pain, it kept us all up the entire night.  I just wanted to jump through the curtain that separated us, climb into his bed with him and hold him.  I wanted to give him words of encouragement.  I would periodically get up to offer him a cold pack for his head, a warm compress for his abdomen, a cup of apple juice... but I could tell I was just being so annoying.  The mother in me knew I was being annoying, too, but I just couldn't help it.  I wanted to do something, but there was nothing I could do.  Of course, when things in the room finally did quiet down, Ty pooped all over the bed... twice.  I must have given him too much laxative to counteract his morphine because I didn't want some silly constipation to hold us back from being released the next day. Whoops.  What a disaster.

We have spent such a large percentage of our time in the hospital over the last six months, it takes such a toll on poor Ty's mental state.  He really has a hard time adjusting at the hospital, and then again when we get home.  His sense of security gets so skewed and it's just so sad.  So, we braved the storm yesterday and finally got out of there (of course it was snowing softballs during rush hour when we were finally discharged).  It took a long time to get home, and as we got closer Ty began to get apprehensive.  He wanted to go to the supermarket instead of going home, or out for pizza, or anything.  It is a weird thing that he does.  He likes to run errands when he is home from the hospital.  I think it is a way for him to feel like his life has resumed to "normal" activity. 

So, today was our first full day home.  Ty was in a very bad mood all day but I blame a lot of that on the meds.  Finally, I gave him something to help him nap around 4PM and when he woke up he was in a much better mood.  We really enjoyed being home together this evening.  He ate well, he made jokes, he was finally getting comfortable with being home.  I was even allowed to go to the bathroom without leaving the door open by the end of the day (he has separation issues when we first get home).  It's actually becoming pretty routine.  Ty is three.  There is a strange mental adjustment period that he has to go through before we can try to resume life as usual (whatever that means).  We are getting there and all is good. 

With all of our love.  XOXO.  Goodnight. 


  1. A lesson that they have taught us repeatedly in nursing school: Your patient is a PERSON attached to a FAMILY. They are not Room 123, bed 1. They are not the appendectomy in room 222. They are people with human needs. The concept actually made it to an exam. our obstetrics professor had us watch an episode of ER regarding eclampsia, and the test question was what was the family's last name of the eclampsia patient. None of us got it right sadly.

    I'm sorry you had to endure another long night in the hospital. It's frustrating when health care clinicians forget the lesson... it's not just another night in the hospital for most people. Any parent would have been as frustrated as you!! Thankfully you got past it and now can focus on having a better time at home.
    With Love and Prayers,

  2. Cindy - You are the best momma bear ever. Good for you for calling them on the carpet. I am glad you are all back home, and Ty is feeling better. I pray for all of you daily. Your strength is inspiring.


  3. I hope today Ty is feeling more secure and adjusted. Poor little guy. Your family has been through so much. I'm sorry the hospital screwed up your discharge. Now you are home and I have a feeling today is going to be a good one!

    I love you,

  4. Cindy:
    Wow, you are brave, and at the on the other hand, I hope it help you released ALL that tension you have been carrying. I am sure, you are now back to normal. All this months, without a hick; girl you are a saint. After the roller coaster you are on, no need to ask for pardon; we are all humans.
    But, think, maybe, only maybe; an angel wanted you to be with that boy next door, think; else he would have been all alone. Instead he was accompanied by a team of angels.

    Hmmmm: that is why we are called patients, because we need to have patience :)

    On the other hand, we are sooooo glad you are back home. Thanks for keeping us up to date with everything, that way we do not feel soooo far away. Our prayers are with you all always! Besos = kisses