Thursday, July 12, 2012

Thankful Thursday - v. 35

Psalm 9:1 (NIV)
I will give thanks to you, LORD, with all my heart;
I will tell of all your wonderful deeds.

My mind is pretty much mush right now after the past week.  I've seen too much of the ER, hospital and doctors offices thank you very much!  {Ok, I realize I technically said "thank you", but that was sarcasm...not one of the things I'm actually thankful for!}

I am thankful for the medical community who has been taking care of Peyton to make sure that we can get her better!

I am thankful for an amazing nurse practitioner in pulmonology who actually responded to an email I wrote Monday night when Peyton was becoming sick again - sick enough to possibly wind up back in the ER.  I was hoping she'd get the email Tuesday morning and give me some direction as to what we should do {as in, another ER trip or just change of meds}.  Fortunately for us, she actually checks her work email at night, which meant that we knew what we would do Tuesday morning before our heads hit the pillow Monday night!  So I am also thankful for her ability to work Peyton in first thing in the morning Tuesday so we could avoid an ER trip {although we were there about 5 hours as it was!}.

While I didn't actually see the nurse practitioner, we were met by an LPN and an RN in clinic who took amazing care of us.  They were well aware of how long we were there and they were just so nice to us.  They even brought Moira juice and crackers at one point.

1 Thessalonians 5:18 (NLT)
Be thankful in all circumstances, for this is God's will for you who belong to Christ Jesus.

I am grateful for a pulmonary doctor who seems to be very careful with how he's handling Peyton right now.  He decided that she needed to be on IV antibiotics, but since she has a port, we are able to do this at home and not as an in-patient in the hospital.  So I am very thankful for that.  Although if I told you the absolutely ridiculous schedule this has me on, you might not be very quick to be in agreement with this!  It isn't just hooking her up once every 6 hours round the clock.  The meds have to be taken out of the fridge 2 hours in advance and then she has to have Benadryl to prevent "red man syndrome" {which she does get with this medication} about 30-40 minutes in advance.  So at night, meds come out at 10p and 4a.  Benadryl at 11:20p and 5:20a.  Meds at 12a and 6a.  Unhook/flush/heparinize her port at 1a and 7a.  Repeat all that 12 hours from each one of those times.  The bummer is that for some unknown reason, the home nurses are not allowed to handle anything dealing with the port, so all of that is on me.  If you can figure out when I'm supposed to sleep, I'll be forever grateful!

Moira and Peyton {this is the same picture as last week..I just really liked it!}

Philippians 4:6 (NLT)
Don't worry about anything; instead pray about everything.  Tell God what you need and thank him for all he has done.

As you may know, our family is traveling to Boston, MA in mid-August in order to take Peyton to the Children's Hospital there to see several doctors for second opinions.  The whole concept of a trip like this is incredibly daunting.  If you knew what a day in the life of Peyton really entailed, you'd understand better.  It's more than just the 18 hours in the car {not in one day, thank you!}.  Anyway, even though the medical costs should be covered by our primary insurance, there are a lot of expenses associated with this trip.  The biggest, of course, is the hotel room.  Boston is not cheap.  There is a hotel within walking distance to the hospital which someone recommended to us.  They bring their child up there from here for the same reasons.  The room there is $190 a night!!!  I want to give a huge shout out to GOD for answering some mighty prayers.  We applied for a grant through a local children's charity.  They were able to approve our application and they will cover the cost of the hotel room only {all incidentals, travel costs such as gas, food, parking, etc. are at our own expense}.  We will be there for 6 nights, so this is an enormous burden lifted!  Oh, and we also extend the same shout out and thanks to the charity that approved the grant!

Aside from this, I will ask for prayers...yet again...for our nursing situation.  It doesn't seem like a week goes without getting a call from the agency saying that one of the nurses is going elsewhere and we need to figure out a back up plan.  I'm not sure why our home seems to be the farming grounds for all nurses to come through to go elsewhere, but that is what it has felt like for the past couple months and I'm pretty stressed and tired of it.  It seems to be ok to allow our coverage to fall into question so another family can get what they need.  I'm not concerned about them.  I'm concerned about Peyton and our ability to care for her.  With her IV meds and illness, she's needing MORE hours of care - not more nurses coming in and orienting right now.  Over 2 months, we had 7 different people in and out of here to fill in gaps and fill in regular shifts.  Is it any wonder Peyton's sick??  So, I asking for prayers for consistency - consistency that means the same nurses are filling in the time...not that our hours are being filled by back ups coming from other places.  Consistency means they are our regular nurses, not someone else's on loan for a shift or two.  Once again, the possibility of another turnover in Peyton's caregivers comes at a horrible time.  She is sick now and needs consistent care now...not a trial of a nurse or two or three to see who fits and then we get the consistent care.  Sorry for the rant, but I really need for this area of my life to calm down and just be, well, consistent for once!

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Featured At The Fontenot Four

linking up with:
The Ramblings of Mrs. Hargrave
Thankful Thursday with First Day of My Life
Thankful Thursday at InspiredRD
thankful thursday with kate says stuff
a thought for Thursday hosted by: Elf House Chronicles
thankful with a punk a pumpkin and a peanut
thankful Thursdays with black tag diaries
Thankful Thursday with Brown Eyed Bell(e)
A Day In The Life

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