Wednesday, December 31, 2008

Sleeping so sound and relaxed. :)

Sent from my iPhone :: Peace <><

JCMC: Day 2

As we anticipate the worst of Emily's RSV in these next few days, Nathan and I are camping out in Emily's room, taking turns napping and keeping an eye on things, making sure Emily's treatments and such are on par. Nathan and I work well in these hospital situations.  I am thankful for my guy! 

Emily is on 45% O2, with non stop Bipap and treatments every 2 hrs. around the clock.  She has slept most of the day and has had a few major desats.  Her secretions are like glue, so we are doing our best to get them out.  She was awake this evening, played with her balloon and suction yankauer for a few minutes before that wiped her out and fell back asleep.

Thank you everyone for your prayers and support.  Annabelle is back in VA with her grandparents and cousins, so hopefully that relieve some of her heartache from being away from us.  That is one of the hardest aspects of this life for us.  Having to send Annabelle away all the time.  Every time she wraps her arms tight around my neck, not wanting to let go, trying to hold back her tears, it breaks my heart.  It's like we are making her grow up too fast. And she is so amazing about all of this. So in your prayers, please pray for us as well as Annabelle, for her understanding and her peace at heart.  It's been awhile since she has had nightmares, but she has had dreams about being left in the trash or pushed into the street and no one is there to help her.

Thanks for checking in and keeping up with our lives.  The blessings we receive are humbling and encouraging.  I always pray that we can be a blessing to those around us, somehow, because we are always in such need. : ) Diana

Monday, December 29, 2008

JCMC: Day 1

We are at Johnson City Medical Center Children's ( We are enjoying this smaller scale hospital way more than a place like Hopkins bc the care is incredibly more personalized and even though we are the first noninvassive (NIV) Spinal Muscular Atrophy (SMA) family they've dealt with they are amiable to our deman...err... wishes. :) I had a couple of great conversations with Dr. Scroth (Peds Pulmo @ Madison, WI) about Emily's care here and that has been reassuring, to say the least. They're using Dr. Scroth's protocols for SMA kids and since Respiratory has never seen a Cough Assist we're training everybody -- ha -- too funny.

Anyway, Emily had a restless day of coughing and coughing and coughing some more. She had a rough time holding her sats for a while, but her end-titles and electrolytes and all the other stuff looks good, so we're doing the right stuff. We only know this drill intubated, so this is somewhat new to us too. Thanks for your prayers and notes of encouragement!!

Sent from my iPhone :: Peace <><

Emily has RSV :/

Hey all,

So, on our Christmas trip back from Nashville we had to make an ER visit for Emily. She has RSV. :/

We're still 6 hrs from home at this point. Not sure what we're gonna
do about this.

She doing relatively well, but we're getting lots of thick secretions out of her and we pretty much have to do all her treatments here at the PICU bc they can't hear her from their stations and all. Nice thing is they don't mind us doing what we need to, while Hopkins always fights with us.

Anyway, your prayers are welcome :)


Sent from my iPhone :: Peace  <><

Sunday, December 28, 2008

En route to Johnson City Children's

They were good to us at Bristol Regional. Time to go to a Childrens
Hospital. I hear they are good in JC... I am hoping that's true! :)

Sent from my iPhone :: Peace <><

Too cute not to post!!

I've had this picture on my phone and it's time to post it - our
oldest, Annabelle. She's nearly always good for an outrageous
smile. :). You bring us happy times, sweet stuff!

Sent from my iPhone :: Peace <><

Tuesday, December 23, 2008

Selected by elimination

We we've decided to go with the Pediatric nursing agency, Home Health Connection (HHC), for Emily's nursing needs.  I wasn't sure which way to go until I learned of the Joint Commission on the Accreditation of Healthcare Organizations (JCAHO). The higher-class agency is not JCAHO accredited, so that made the decision easy.  

We are set to start services on the 24th, but we're heading out of town so that will give our nurses some time to get on board with the new agency --- yep, we have some great and committed nursing for Emily and they want to "follow" us to the new agency. :)  We are very grateful for them, indeed.  

Care First started this new relationship with HHC by telling them that they were going to put a 6-month hold on paying them for services, however. I wanted to scream.  Apparently the Med. Director of CareFirst has said that will not be the case, but HHC has to have it in writing before they can start on our case.  Hopefully that will be supplied by Tue morning sometime.  

So, that's the scoop.  There are inevitably more battles to be fought.  Next will probably be whether or not we get nursing during the day b/c CareFirst probably only wants to pay for nights -- when we could really use day and nights like we did with Linnea.  If these people would come and see Emily we may not be having discussions like these.

Thanks for your thoughts and prayers.  This transitioning has been frustrating and frightening.  

Peace <><

Saturday, December 20, 2008

Decision Weekend

Well, today is decision weekend for me.  Diana's busy at a wedding in CA and Monday morning the insurance company needs to know what decisions we have made for a private duty nursing agency so we can get the ball rolling.

I am mainly considering two agencies:

On one hand we have a Pediatric agency that has many cases in MD and the surrounding states and at least a few of those cases are with SMA families.  They are your standard good agency and very nice.  They feel confident they can staff our needs and are local.  In fact, they staff another SMA family's need that we are aware if nearby.  A less complicated case, but at least they know about SMA.  This agency will most likely pull from the same pool of nurses we have already experienced - and that has been hit or miss with us.  We are very picky and Emily requires talented and caring people. 

On the other hand I have a high-class agency that hasn't dealt with Pediatrics, but they specialize in ventilated patients and Alzheimer's cases - and many of their nurses do have Peds experience.  Why does this matter to me?  Well, Emily has many of the needs of a ventilated patient - but requires "more" support b/c she isn't actually vented, but is dependent on BiPaP 14-16 hrs a day when well -- more when sick.  She will stop breathing w/out it if falling into a deep sleep. -- Anyway, this agency mainly caters to the wealthier and older crowd, but after hearing Emily's case through an employee they said they'd be interested in working with us.  My main concern is the fact that they haven't had to staff any Peds cases, so would we have to deal with a learning experience that we don't want to, or can't afford?  They sound great and b/c they cater to "pay out of pocket" people they have a very high standard for nurses that they employ.

Tough decision b/c I enjoy the familiarity of the Peds agency, but am enticed by the stature and professionalism of the private agency.  What to do.....

Peace <><  

Friday, December 19, 2008

Nursing Coverage :: 1st issue :: Update

A quick update for anyone that is following.

After MANY MANY phone calls making it unequivocally clear that I was NOT pleased with the direction this nursing situation was going the contract that was written for a new agency has been put on hold and our current nursing has been extended through 12/23. This gives us time to 1) find a new agency, or 2) work something out with our current agency that will work for everyone.

We have to make a decision SOON, however, b/c everybody wants to put ridiculously restrictive time lines on us. Find a new agency and get our nurses transferred over to the new agency in... say, 1 day. Yeah right.

Anyway, they know that I will not sit here and let people make decisions for us without our involvement, so I think that is half the battle. We are not idle by ANY stretch of the imagination. The day ended with some good conversations and we are hopeful to have an appropriate plan of OUR choosing by early next week.

Thanks for your concern and prayers.

Peace <><

Thursday, December 18, 2008

Nursing Coverage :: 1st issue

Oh no you don't! Don't EVER EVER EVER make decisions about my daughter's life without my consent - EVER! I'd prefer you strap weights to my ankles and throw me in the ocean. DO NOT mess with my kids!

Care First has taken it upon themselves to select another nursing agency... to start tomorrow, without our approval! Oh, and by the way, the new nursing agency informed us that Care First will only cover night nursing as of 1/1/09. What gives them the right to make these decisions and inform other people without our consent? I didn't authorize anyone to pass on Emily's medical information to ANYONE! When they come down and spend spend some time with Emily MAYBE then they can make some decisions on their own, but probably not... ever. Until then Care First better get their ducks in a row b/c it AGAINST THE LAW to pass on information without our consent - and I don't think I've passed on any signed papers to give them permission -- much less any sort of anything that gives them the right to make decisions about my daughter's life and well-being without my consent. Got it?!

As of now Care First does not authorize our current nursing agency to continue staffing after today. If you have ever dealt with nursing (especially connected with Spinal Muscular Atrophy (SMA)) you can imagine how I feel. If you haven't --- hit yourself in the gut and then the head with a hammer... repeatedly... now imagine that is some random person you don't know is doing it and there's nothing you can do to get them to stop... they want you to give up. That's what it feels like.

Wednesday, December 17, 2008

Nursing Coverage Approved!!

Well, what a few weeks we have had. Due to my regular employer dropping the health insurance that covers Emily's nursing benefits I had to quickly find a new company to work for. That news was nerve racking. Very few insurances available through companies in our area cover Private Duty Nursing (PDN), much less all the other needs of a Spinal Muscular Atrophy (SMA) patient, so the task was daunting -- especially since people aren't necessarily moving between companies very easily these days.

We were very fortunate that a smaller company that contracts in my office wanted to hire me... and digging in their benefits showed us that their insurance provider, Care First (CF), would cover PDN for Emily. So, we started the transition (which is fairly involved as far as my job goes - and 1,000 x's more involved concerning Emily's medical needs). We received EXPERT help from the new company's insurance broker and MANY hours were spent to make sure the transition of Emily's care would work.

So, I started actually working for the the new company this past Monday - only to be told by CF that they would not cover PDN for Emily! Was I shocked? Nope. Unfortunately, I wasn't -- but I was very angry, I'll tell you that! Fortunately, I had spent weeks up until this point communicating with the insurance broker and new employer to create an extensive document trail showing CF that they WILL be covering PDN - we were ready for battle, b/c EVERY insurance company we have ever had to deal with has tried to deny Emily coverage for different medical needs. :/

Anyway, to make a long story short, our nurse case manager with CF presented our case to the Medical Director with documentation of Emily's needs and a Letter of Medical Necessity (LMN) signed by Emily's doctor and they approved to continue the 12 hrs/day that Emily is currently receiving. Yay!

We may still have to find a new nursing agency, but we're trying to work through some political issues to make that work out with our new insurance. For now, Emily has nursing coverage, and that means I can calm down... for now.

Peace <><

Monday, December 15, 2008

Sister time. Accompanied by Dora stories :)

Sent from my iPhone :: Peace <><

Friday, December 12, 2008

Wearing daddy's hat and lovin it. So what if it smells like my scalp!

Sent from my iPhone :: Peace <><

Friday, December 05, 2008


So - we've been having issues for a while here - Emily's doing very well, btw.

We've had these strange situations where Emily will wake up gasping and stuff -- very puzzling. Plus with the long sickness and stuff it's been weird.

Well - we discovered the other day that herBiPAP backup respiratory rate had somehow been set to 10 (vs the usual 25) and NO ONE has any clue when that happen or how. That BiPAP has recently come back from getting serviced a couple of times, but we set the settings ... or did we?! Ugh. Chances are we probably, for some unknown and insane reason, didn't reset her backup rate to the normal 25.

So, I think we can attribute some of these complications to this -- Emily will stop breathing when sleeping, we've seen it before. So, falling into good sleep at only 10 breaths/min could cause some issues. We're just glad she's doing as well as she is despite such a dumb mistake. It's strange when something like this happens b/c we're so meticulous with her care and equipment that we were immediately stumped -- like it'd be easier to think someone came in and sabotaged our BiPAP b/c we just don't do stuff like that ! Ha.

Anyway - thought I'd share our dumbness -- go check your equipment settings now (or if you're not an SMA family remind someone you know) - I know we'll be doing it more carefully from now on. {eyes rolling}

Peace <><