Sunday, August 29, 2010

3 guesses

I don't even want to count the number of hospitalizations this girl has had since February 11. 

I also don't want to count the number of times that we've been told someone has found "the last" IV site for this girl.  It's the thing that ate its way into my brain and made me want to drag her home with a PICC line on June 30, even though we had nothing that needed to be given in that IV.  So we flushed that line twice a day, checked for blood return, heparinized it, ... until it gave back no blood return, even after we got it de-clotted.  So I let it go.  I had said all along, that when we lost blood return, I knew the next fever, it would be taken out, because no one would have a way to know if an infection was in the line.  And I said at that point we'd be back to just trusting God to find her another vein, ... or grow a new one.  And of course, He has done that.  Twice.  Both of them have lasted as long as they were needed, to everyone's amazement.  And two well-loved nurses have not even hesitated to let me cut away some hair so they could try her scalp.  He takes good care of her.  And apparently, doesn't need much help from me.  He has nurses and doctors and respiratory therapists for that.

Every hospitalization, I get to learn something(s) important that we need to be able to care for our girl. This time, one of those things was the importance of positioning and CPT.  If I ever wondered if it "really" made a difference, I know better now. 

So we know these things. 
  • Mallorie does, too, have IV sites.  Or she will when she needs them.

  • An oral airway is a blessing from God, and in our lives, is superior to a tracheostomy.

  • Diastat for seizures is amazing.  Better than IV Ativan.

  • There is no end to the peace that comes from telling people she is having a seizure ... and going to get something for it, instead of going off to "discuss" and coming back to say they want to watch it for awhile.  I still have my guard up, even after all this time (since June 30), expecting to have to argue for treatment, but no one is arguing.  Even when they are still learning what Mallorie's atypical seizures look like, still no one is doubting, and since hers often can bring on respiratory difficulties, this is a blessing.
  • Tylenol can sometimes stop her from heading into seizures.  This I am begrudgingly admitting, because I had to learn it from one of the residents in Houston.  I was not very happy the day I had to learn this, but today I am grateful to that resident. 
  • A great pediatrician makes life easier than you would ever think possible.  A great pediatric group multiplies that blessing 5 times over (soon to be 6).  And a smart neurologist who is able to be reached by phone, and who your awesome pediatrician group happens to like, as well, is a gift from God. 
  • If you are really, really lucky, one of your relatives might decide to become a pediatrician and join Dr. B's group.  So when Mallorie turns 21 or whatever magic age she'd have to be when you usually have to find an adult doctor, you can try to pull rank as "family." 
  • Kefir is nothing short of a gift from God.  Still learning about this stuff, but it's cured Mallorie of the diarrhea we had been battling since June ... and prevented c-diff, despite all the antibiotics she had to have this time.
Oh, I did get one set of labwork out of that crazy PICC line.  One very relaxed blood draw done from the safety and comfort of our bedroom, and dropped off without having to bring Mallorie out in the heat, with results in a few hours.  So it was good for that.  But I really ought to have learned, by now, that God will come through and really doesn't need my help.


ANewKindOfPerfect said...

Oh how I have missed seeing your beautiful little girl! We need pictures of HER - her gorgeous face. :) I am glad that things are going well. It is great that Diastat is stopping her seizures. It is a wonder drug for my Peanut as well! Thank heavens for doctors and nurses willing to work with you and listen to you and realize that YOU know Mallorie best. :)

I hope this blog entry is the start of you blogging again. You have been missed sweet friend!

The VW's said...

I have thought about you and Mallory lots lately and I have missed you too!

Sorry to hear about all the hospitalizations! But, happy to hear that you are learning things along the way!

I always wonder why I put so much effort into worrying, because like you said, God needs NO HELP from me! One day I'll truly remember this...I hope anyway!

Take care of yourself and your sweet girl! I'll be thinking of you and praying! Hugs!!!

Jacquie said...

Glad to hear you're seeing blessings. I checked on you and Mallorie often.
Poor girl.
I'm sure it's hard on the rest of the family also.
I hope you get moments of peace and enjoyment in the midst of chaos.
(and isn't it nice to be taught something by a profesional who looks old enough to be your kid. You may not have experienced that yet, but I have and it ain't pretty. :)

Krystal said...

I too have missed you and Mallorie. I'm praying for you!

Cathy said...

Wow, I had just quit coming! I thought you were not doing this anymore! Ha, in all your spare time. Thank you for the pictures of Mallorie and so glad you are having a good spell of being home. Shhhhh, I better whisper that!

Kathleen said...

I just heard of Mallorie's passing by way of By God's Grace.

May God comfort you in your grief, and may you be blessed with many wonderful memories of this beautiful little girl who showed many of us that life, even when it is not perfect, is beautiful.

I will never forget the picture of her looking up at her daddy -- it is obvious she loved and was loved.

She is perfect and whole now, snuggled in the arms of Jesus.

Love and prayers

ANewKindOfPerfect said...

Dear family, I am so saddened to hear the news of Mallorie's passing. My heart is crumbling just thinking about it. I hope you know how many people's lifes have been touched by your beautiful daughter and your entire family!

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