Saturday, June 2, 2012


I've been going about this whole thing wrong. See, I thought people came to Hopkins for top of the line medical expertise and quality of care. Silly me. No, apparently people come here for the private rooms. Or so that is what was clearly explained to me yesterday. 

The new Children's Center is nice. There is more room, no matter what floor you are on you are able to spend the night with your child if you wish, things look cleaner, it's more up to date and what you would think of when you think "Hopkins". The only problem is that a few things were over looked. Silly, little things. Like safety. 

I won't bore you with all the details about why this is so. Or about how even the nurses don't like the new set up. I will, however, bore you with what I found to be absolutely incredible. I said a few days ago that Rambo was finally moved out of intensive care and into intermediate care. I was wrong. Hopkins no longer has any form of intermediate care. It goes straight from intensive to general pediatric care. There is nothing in between the two. And that is, unfortunately, right where Theodore falls. Just on a normal daily unsick basis, he needs more care than is provided here in general pediatrics. I can't believe that a world renowned hospital overlooked the necessity of such a place. Even his doctors agree that he needs constant care but we are told there is nothing we can do abut it. We are left to pick up the slack. The doctor said quote We thought the parents would like the private rooms. You always have the option of one of you staying here with him overnight. end quote. So we asked the question of why we couldn't just take him home and she proceeded to agree with us that he would get better care at home. 

I'm sorry... what? I thought the whole point of being at a hospital is because you receive better care than at home. 

So here we remain. I suppose I should tell you why we are still here. We thought we would be going home yesterday or today. (There we go again thinking. We should know better.) The reason is because of Rambo's bloodwork. His platelets have more than tripled as have his white blood cells. Neither of those really mean anything on their own but are possibly signs of something. His WBC is usually around 6,000 and it was over 18,000 yesterday. His platelets should be around 200,000 give or take and they have slowly been counting over one million. Of course this would happen. So he was started on a 48 hour course of an antibiotic yesterday and we are working on getting blood today. He's already been poked 4 times today to no avail so the docs are going to try an arterial stick. Painful, but necessary. By all accounts he appears fine. He's on normal oxygen, good color, happy mood, etc. The issue is the possibility of what could happen. We'd like to see both counts start to trend downward so we know that we are covering the possible infection or whatever he might be brewing. If they do not succeed with the arterial stick then we will have to go without the information and just watch him carefully to be sure he's fine. Not necessarily comforting, but what can you do? 

Thankfully Ben was able to come back up for the weekend so I'm not alone and so we can tag team Theodore's care.  We still have the hope of coming home tomorrow. We shall see.

In the meantime, we'll be at Hopkins doing their job. 

I should note that none of this is saying the nurses are bad or don't care. The issue is the way the units are set up. It's quantity not quality that is the issue. They need at the least more staffing. What would be better is having intermediate care again. I think they will find this only overloads the PICU and causes for more trouble without. But what do I know? 

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