I am sorry to report that there's been no progress so far. Total bummer. Her belly was actually looking a little better earlier today, but this afternoon it is WAY worse. I don't see how in the world she could last much longer without compromising something. I mean, something's gotta give!
So I wigged out a bit. I just couldn't take it any longer. She is signing "milk" which she has NEVER done (asking for nutrition of any kind) before. So, she MUST be HUNGRY. Which is kinda hard to understand when you see how she looks. But, I'm only giving her apple juice or water. I gotta tell you - I would have given my right arm to have that child ask for nutrition! So, to have to tell her no KILLS me. Like you wouldn't believe.
After having to tell her no a few times, and wanting to explode, I went to find my social worker. I had to vent. My problem is that we are in the cardiac intensive care unit. She isn't critical. Well, she might be if she doesn't poop soon. But, as far as their care goes - she's not ranking very high. Which I totally get. But, I'm less than impressed with today's nurse. Especially for the CICU. We've hardly seen her at all. And, quite frankly, I don't know that I want her doing much anyway, if you get my drift.
So, between the docs having more important patients to take care of, and a nurse that's awol, I just feel that it is totally up to me to watch for danger signs or get anything accomplished. And that wigs me out.
Luckily most medical professionals are able to care about your problem, even when they've got tons of other problems of varying degrees on their mind. That always blows my mind. So, my social worker helped me out and got them to order some more help for Harlie.
They gave her a glycerin suppository last night, which produced nothing. This afternoon I asked them to give her another one. Again, nothing. So, they have ordered an enema, but it hasn't gotten here yet. This is what I was referring to in yesterday's post - things take a lot of time in a hospital. The docs had to put a order in, the pharmacy has to pull it off some shelf somewhere (it's not like they have to make the stuff!) and then it gets brought up (apparently from China, because it's STILL not here!) then the nurse has to get it and then bring it in and give it. I don't know where the current breakdown is in that chain of events, but it leaves us no closer to relieving her discomfort.
I could have driven to CVS and gotten one and just given it myself by now.
We are supposed to move to the floor (heart and kidney unit - HKU) as soon as a bed is available. But there are several kids on the waiting list to be moved there, too. So, I'm thinking we're staying here for a little while.
I wish I had better news, but hopefully my next post will be MUCH better!
Thanks,
Christy
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8 comments:
Total bummer! Hoping things get better quickly.
Sorry to hear Harlie is still dealing with constipation problems. That's probably the one downside of being in the cardiac ICU. The ortho floor is probably more tuned into the issues that Harlie is experiencing post surgery. You are in a tough spot and it makes your having to be Harlie's advocate all that more intense. I hope Harlie gets some relief very soon.
Hugs.
Ann
Gosh Christy, this sounds awful. You are such a good advocate. I hope things turn around soon for Harlie's sake and yours too! This is why you need to be a medical caregiver someday--you've seen the good and the bad and would be awesome. Blessings!
I agree with B-Mama..in your spare time (which I know you have plenty of.LOL) (geez...I can't even find time to do anything and I just hve the boys) you need to take some college classes geard toward social work...you could work in a children's hospital and understand first hand on what the parents need. That is how I got into the nursiong home field..understanding what my parents needed..it helps when someone has been there and done that!
Hoping tomorrow is a much much better day. Try to keep your chin up. Im hoping that today is the worst she'll give you and she wil come back kicking like she always does.
Thinking of you guys. Sorry today wasn't as great as you'd like and I hope she starts to get things moving quickly! If you need any help with the boys - give us a shout. xoxo
You're doing a great job advocating for Harlie and she is going to receive better care as a result! I can't imagine how exhausted and wigged out you are right now, but I do know that your sweet girl is lucky to have you there. May you both have a peaceful night tonight!
I'm sorry things are so tough at the moment and that you are having to fight for Harlie. It's just so wrong that it takes all that time to get what she needs. (Thought that was just a UK/NHS thing).
Hope Harlie gets to 'go' today and her stomach goes down. I think it's great that she's asking for milk. Fingers crossed that she continues to do so, even though you can't comply at the moment.
Lisa B
Hampshire, UK
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