Our Adventure at “Camp Hospital”

We arrived, and from the minute we checked in, it was a whirlwind of meeting doctors and techs and nurses, etc.  As soon as we got there, a volunteer from Child Life came in and asked if we wanted a visit from the pet therapy dog…the answer was a resounding YES.

Straight off, they sent her for PFT’s.  The Lung Function Test department was OUTSIDE the hospital in one of the office buildings, in the Pedi Pulmo practice office. (It makes sense that they have one there, it just blows my mind that the hospital doesn’t have a PFT machine IN HOUSE.)  To get there, we had to walk about 5 minutes…in the gross humidity…past the smokers enclave area…Mariella pulled her shirt over her nose and mouth as we walked by.  I hadn’t realized it was so far away, and outside…or I would ahve taken their offer of a wheelchair for M.

Basically, we hung around and just waited.  The first night she slept with a sat monitor on.  We did have a little bit of a scare when her sats dropped to about 87….alarms rang and nurses and the night residents came running in.  She had BEEN running between 92 and 96.  We adjusted her position,(raising the head of her bed, and fixing her pillows) and her sats improved greatly.

The big issue we had, is that Mariella very rarely BEHAVES as though she isn’t breathing well…unless she’s REALLY REALLY sick, the low level of breathlessness she’s feeling doesn’t really keep her down…which is GOOD, except I kept saying, she’s getting breathless…stopping to take breaths in between words, or gasping after laughing, etc.  However, no one really SAW that, because when they were in the room, she was sitting quietly being examined, or they were talking to me.

They ran a generic blood panel, and also bloodwork for autoimmune issue.  She had an X-Ray done.  The X-Ray wasn’t horrible but did show signs of issues.  She had a follow up PFT that showed some reduction in her numbers.  They were still good, but not as good as they were when we got there.  It will be interesting what they are in a month.  The pulmo on the floor also wants a copy of her sweat test values.  He kept saying “I don’t think she has CF, but I want to see the values.  The Ambry Panel isn’t the definitive diagnostic tool, I need to see the values.”  I HATE when they do that.  If he doesn’t think it’s CF, then why does he NEED to see the sweat test values, and why did he say the genetics weren’t the definitive diagnostic tool?  (I don’t think she has CF, I just get very tired of it even being brought UP)

No one was really able to put their finger on WHY she isn’t growing, they all agreed it isn’t likely due to steroid use…but they don’t know what it’s from.

We got sprung early, because she was showing no signs of adverse reactions from coming off the steroids…no adrenal insufficiency, which was my fear. (albeit an over the top fear…I really had no reason to fear it, and I KNOW that)   There were no more tests they needed to run either, so they had no way to justify to the insurance company the need to stay.

I talked with both the pulmo on the floor and her attending pulmo separately,  and they both said that Mariella would not be able to stay off steroid medication.  That it was important to give her body a break, but that eventually (it may be a week, it may be a month, it might be 3 months) she will end up back on them.  I asked how I would know, and they both said the same thing, “Her lungs will tell you when it’s time”

So, right now, we’re in the waiting game.  It’s a very uncomfortable place for me to be.  I wish I had a time table…”in 2 weeks, restart medication” or something like that.  “her lungs will tell you” is kind of nebulous.

I AM glad to be home…I don’t THINK this was a wasted exercise.  I wish we had gleaned more information, but it is what it is.


4 Responses to “Our Adventure at “Camp Hospital””

  1. 1 sarahsasthmablog July 10, 2011 at 6:30 am

    It’s wild that the hospital doesn’t have their own PFT machine. Where I live, the hospital is the only place where you can get a ‘full’ panel of PFTs done (and I’ve been scheduled for that… sometime this month. I swear, I have so many appointments this month, it’ll be amazing if I manage to make it to all of them!)

  2. 2 mommato2beauties July 11, 2011 at 9:30 pm

    they didn’t make her go in the box…but they would have if her PFT’s didn’t show what they expected them to.

    When she’s medicated, her PFT’s rock…but unmedicated…well…we’ll see. I’m not sure what to expect.

    • 3 sarahsasthmablog July 12, 2011 at 11:06 am

      I’m similar: medicated, my PFTs are so far >100% that, depending on what you’re measuring, 100% can signify dangerous airway narrowing.

      • 4 Elisheva July 12, 2011 at 2:00 pm

        Yup, mine are pretty high over 100% too normally. That’s one of my peeves – when doctors think you’re fine when you know you’re not.

        Anyway, Camp hospital sounds like fun. I especially liked the pics on FB. Enjoy your trip!

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