October 19, 2011

We're Home!

I'm a few days late updating but we are home - and have been since Monday evening.

Our hospital stay was completely miserable.  Kate had a really hard time with this admission.  I'm not sure if it was the fact that she wasn't feeling well, if she remembered the hospital setting, something else, or a combination of the two but, she was miserable.  She refused to sleep more hat 8-10 hours total a day (night time and naps combined), was very fussy, and you could tell she just wasn't comfortable in her surroundings.

We also ran into many frustrations during our stay.  The 9th floor (which is hematology/ oncology) is not my favorite.  I will go as far as to say it was downright horrendous.  There are no visitor guidelines so siblings of other patients were running around the halls with snotty noses, coughs, and every sickness imaginable.  The little boy in the room next to us had, no joke, 15+ people visiting him at all times every day.  The nurses weren't nearly as knowledgeable as the nurses on the BMT floor and had absolutely no clue how to take care of a BMT patient.  They didn't close Kate's hospital room door - which meant the sickies in the hallway probably made their way into Kate's room, improperly handled her line (because they are more accustom to ports verses teeny tiny baby central lines).  Ruptured Kate's "good" line and so many other things.  I was constantly closing her door, asking the nurses to wash their hands, to put on gloves, to clean her lumen every time it was used, etc.

By Monday morning I was demanding discharge papers.  As in, we will walk out AMA if you do not have signed discharge papers in my hands by the afternoon. 

BMT knew how unhappy we were but, unfortunately, there wasn't much they could do about what floor we were on.  The BMT unit at TCH is very small - only 16 beds - so it fills up quickly and hem/onc is where overflow BMT patients are admitted.  Thankfully the on-service BMT doctor agreed to let us come home Monday since all of Kate's viral panels came back negative. 

I'm praying we are not readmitted again - both for Kate's health and my mental sanity.

As if a horrible hospital stay wasn't enough, Kate decided to age me a solid 20 years this morning.  When I got her out of her crib this morning, I quickly noticed that, at some point during the night, she ripped off her central line dressing and managed to pull 3 stitches out as well.

I had a huge freak out moment (and may have sent Alex a text that said EMERGENCY CALL NOW - I realize now that might have been a bit dramatic) while I tried to figure out what to do.  I called out home health company; no answer.   I called the BMT clinic; no answer.  I called my sister (who is a nurse); no answer.  Panic set it.

Thankfully my sister called me right back and helped me figure out what to do immediately.  Then, I realized that I had our home health nurse's cell phone number so I called him.  Thankfully, he answered, talked me through what I needed to do, and came to the house pretty quickly!  Her site looks good, has a fresh dressing, and now all we can do it pray that it doesn't get infected since it was exposed overnight. 

I'm hoping the rest of the week is not nearly as eventful as the past few days have been!


Shannon said...

That all sounds absolutely terrible. So sorry you guys had to go through all of that and praying Kate can stay away from the hospital!
Praying for you guys!

Anonymous said...

Oh my word!
That's way too much going on for you guys. I can see why you wanted to get out of the hospital ASAP!
Thinking of Kate and praying that she stays well and that her site stays infection free.
Enjoy home as best you can :)

PS I follow you on Twitter and always want to say hi but I'm private!! So thought I would let you know that I've been praying for Kate through all of this!


Shasta said...

What a crazy hospital stay. Those nurses should have been more diligent in making sure her lumen was cleaned after using it. That's just improper care right there. No wonder you wanted out of there ASAP.

Lindsey said...

So glad you are back home but what a rough time for you! That must have been so terrifying to see the line out like that. Praying that since you do such a good job with her at home that she was not exposed to anything. Hope a restful night's sleep comes soon too. Thoughts &Prayers!

Alex said...

Oh this post brings back nightmares. My daughter is a neuroblastoma survivor--she was 9 months when she was diagnosed, and also had a central line. I had freak outs just like the one you described, where I was hyperventilating, trying to decide what to do as a squirmy baby was lying there with a central line half out. And the hospital stays!!!! I feel for you! The only positive in my case was that we were in the hospital during the swine flu epidemic and there were STRICT policies of no visitors. It was hard for our older child, but so nice we didn't have kids running the halls like you describe above. Best of luck, I know you're beautiful baby girl will do wonderfully!!!

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