Saturday, December 04, 2010

Still here.... #SMA

Oh my -- It appears time has revealed my ultimate weakness; consistency. :/ --- it's been months since any update from the Lee family, unless you are paying attention on Twitter or Facebook, of course.

Crazy dog
We are alive and well and we've been taking advantage of our longest hospital-free period in... history.
  • Diana: Usual supermom + taking two college courses!
  • Ananbelle: School, Cello, Piano, Pioneer Girls, SuperSister
  • Me: Working, adding features to our "new" Turbo Diesel handicap van, and other things....
  • Sunny: running around, pooping, peeing on our rug... grrrrrr!  HAPPY DOG though, and very kind. :)

Lynn Wheeler and Emily
So what else have we been up to?  Well, we made an epic journey to Georgia where some long-time and new friends put together a gold tournament to benefit Emily. What a blessing!  We finally got to meet the Wheeler family and reunited with many friends and families from when I was in Middle and High School!  Everyone was extremely gracious and truly blessed our family and Emily with their generosity. With the money raised we have been able to upgrade our van situation, which will come in very handy with all our traveling.  We're still making adjustments and will be selling the "old" van very soon -- in case you know anyone that needs a full-size handicap van. It's nice. 
New Handicap Turbo Diesel

Lynn Wheeler Golf Tournament for Emily

All-in-all it's been a very good few months for everyone. The weather is changing and that brings complications to Emily's life, so we are hoping, praying, and working to keep her healthy and strong.  We've managed to keep the breast milk supply coming (THANK YOU MOMS!!!) which really keeps Emily healthy.  
Boating on the Potomac

We have a new insurance company again, Aetna HMO, so we are going through new denials - this year, again, it is Synagis, the vaccination for RSV.  RSV is a TERRIBLE respiratory virus that kills kids with compromised respiratory systems every year. Aetna says that since there are no "randomized peer-reviewed studies on children Emily's age," they are not willing to pay.  Maryland Medicaid has made the same determination, so our only options are to go to the Insurance Commissioner, again. However, if there are not studies then they will say no as well.  SO stupid since Emily's history has shown that no Synagis = terrible PICU visits and near death. If she gets Synagis she either doesn't get hospitalized or her stay(s) are very short as only some support is needed. Basically, Aetna is saying it is more cost effective for them to hope Emily doesn't get RSV and almost die. Thanks "insurance."

We've gone through a couple more nurses, but we have two right now that are really great. They LOVE LOVE LOVE Emily and care for her with the purest attention. We don't have nights covered, but the care we get during the week days warms our hearts enough to take care of the rest --- I am speaking partly for Diana b/c she's got the brunt of the tasks, but I think I am being accurate.  I'm just hanging on. :)  

That's it for now. Follow me on Twitter for more frequent updates -- maybe too frequent for some people's liking. :) 

Tuesday, September 21, 2010

Remembering our precious little Linnea

6 years ago today we lost our little Linnea Grace Lee.  She passed on from this life to the arms of our loving God from the chilling affects of Spinal Muscular Atrophy (SMA).  We miss her each and every day.

Monday, August 30, 2010

3rd Annual Lynn Wheeler Golf Tournament for Emily Lee : #SMA

Well, in about 1 month we will make another trek South to Georgia - this time for the 3rd Annual Lynn Wheeler Golf Tournament... for Emily Lee!!  Thanks to some friends from my time in GA Emily will be the beneficiary for this years golf tournament. What a blessing it is! We are looking forward to the time and fellowship with people we don't really get to see all that much.

Thank you so very much, Wheeler Family, for choosing Emily for your tournament -- and to those who have put the time and effort into arranging this tournament.  And thank you so much for thinking of our family and Emily.

Click on the link above for more details. You can also fill out and print the form below to participate.  Thanks!

Wednesday, August 18, 2010

It's a boy!!!

.... DOG!  Yep, we've moved on as a family and found ourselves a little doggy to accompany us on our journeys.  We've talked about a family pet for a while and have looked into what the best addition would be for Emily's needs -- and that led us to Sunny, Bichon Frise / Shi Tzu -- a "Shichon."  We picked a male Shichon b/c it is small, hypoallergenic, and in my research and conversations found that it would be a good Companion Dog for Emily even while living in a townhome environment.

Our plan is to put Sunny through therapy dog training and immediately started incorporating Sunny into our daily routine of respiratory treatments and busyness.  He is doing quite well.  We haven't found a good trainer just yet, but he is still a puppy, so we have some time to find a good one in our area.

This little guy was made possible by some incredible girls from the Columbia Presbyterian Pioneer Girls.  Through fundraising, their efforts made it possible for us to find just the right little puppy for our family. Thank you so much girls.  We're looking forward to presenting Sunny to you guys this Fall! :)

Monday, August 16, 2010

Linnea Grace

Our time was so short with our precious little girl, but the things that we learned through her life were priceless. Her name holds a lot of meaning to us, our sweet Linnea Grace. Linnea Borealis is the national flower of Sweden, so that is part of Nathan's heritage. It is a pretty and delicate flower, just like Linnea was. "Grace" came as we struggled through being young parents and a rocky marriage.
I was 6 months pregnant with Linnea when Nathan started an internship in Westcliffe, Co. As he spent his summer guiding, I trudged around a ranch with an 16 month old energizer bunny that couldn't quite keep her foot steady when the ground sloped all around us. Porta-potties all summer and changing rooms every few days to a week. I recall freezing mornings with frost on the ground, as we ate breakfast outside, and then, 90 degrees by the afternoon. Nathan and I didn't get to spend much time together, so that really made it more difficult on our marriage. With that said, it was by God's grace alone, that we survived that summer as a family, that we walked away loving each other, together to rejoice in our 2nd daughter's birth. So through God's grace, we were privileged to care for one of His, and we are so thankful for every minute of those 13 months of Linnea's life.

Sweet girl, thank you for your beautiful eyes and gentle spirit. God is good.

Thursday, August 05, 2010

Mom and Dad are on vacation!

By the time many of you read this Diana and I will be on the road, on our first vacation alone since having kids. Believe it or not, we are leaving for 4 days without Annabelle and Emily while an Army of 4 + Annabelle take care of Emily -- My mom, Diana's sister Cindy, and two nurses will take turns on shift covering the 3 nights / 4 days we will be away.  I can hardly believe we are doing it, but we are. :)

So what do the Lee parents do without children?  Not sure yet -- but we have some fun activities planned. Camping, Whitewater Rafting, Motorcycle trail riding, and ---> RELAXING.

We're heading to upstate New York to enjoy the Adirondacks and it is going to be great. I'll be tweeting (duh!) so check in if you'd like to catch some photos and other tidbits of info.

Thursday, July 15, 2010

Our Miracle 5!

Our amazing Emily was born with the biggest wide eyes I have ever seen. Always watching and ready for what life would bring. She already knew she was different, special, and about to change our lives forever. And so she has!
Having memories of almost losing her life again and again just makes today all that more special. I remember when Nathan and I could only talk and hope for a few months at a time, because her first two and a half years were so unpredictable, even with all the medical support we gave her.
I remember the moment when I allowed myself to think beyond a few months, and even dared to wonder about her 5th birthday. That was something I couldn't even talk about, because it scared me just to hope for that. Fast forward a few amazing years filled with her beautiful brilliant smile and bright happy eyes, and here we are.... Happy 5th Birthday, Emily! You are so treasured and loved. God blesses us each day through your incredible life. We love you so much, sunshine funshine girl!

Sunday, May 23, 2010

Late May update

What a busy Spring! From our trips to school and the rest of life we're just hanging on for dear life.

Emily has been in excellent health and we are so grateful for that. We haven't had the nursing coverage we need so it's been a blessing to have no emergencies.

Emily's also doing well in school and we're looking at a 5 day schedule still for Summer school. :)

Some big things on our plate right now are job and housing related. Yuck! We need prayers for both and anticipate moving local in the next few weeks. I'll leave it that. :)

- Posted from my iPhone

Friday, April 30, 2010

Still here

We are still alive and well -- I just wanted to let you know.

Emily had been in great health despite some allergy stuff that's hitting us all pretty hard this year. She's growing up so much and we're making plans for Summer school and then she starts Kindergarten in the Fall!! :) Yep! Starting this Summer we're aiming for school 5 days/ week and continuing that schedule on through the school year if we can manage. How exciting! Emily just loves school and she is doing really well. She's a busy kid. :)

The rest of us are plugging along as usual. Annabelle with her growing list of 8 yr social activities, Diana is taking some college courses and I'm completely overcommitted as usual.

If you're the praying type we are searching for a single-story home to rent b/c this townhome is not safe for Emily really. Anxiety is growing in me the longer we are here. Ideally we stay in this county or ens up in one that is good for Emily's education and development. Please pray for a smooth transition out of this home and into whatever is next - we're not sure how that will work since we're upside down, but something will work out one way or another.

I just wanted to shoot a quick note out to say we are well. Take care!!

- Posted from my iPhone

Tuesday, March 23, 2010

Disney MakeAWish update

We're having a blast here at Disney on Emily's Make-A-Wish trip!! Everyone is so nice and accomodating. It's hard to believe this happens every day for so many families like ours. What a blessing. Check out our slideshow above to see what's going on...

Yesterday we played at Magic Kingdom ALL DAY and Emily did great. :) We closed things out with the amazing Disney fireworks. Wow!

Today we spent some time at Animal Kingdom and that is quite a place. The highlight was probably the Lion King show. Emily could see the whole thing from where they sat us and characters were coming to say hi to her throughout the show. She loved it and we loved watching her enjoy it. :)

In case your new to our blog, Emily has Spinal Muscular Atrophy (SMA). This Make-A-Wish trip is a dream come true. :)

Emily may be coming down with something so please keep her and us in your prayers while we are here.
- Posted from my iPhone

Thursday, March 18, 2010

Operation Disney

Soooooo - we are embarking on our epic Make-A-Wish journey to Disney this coming Sat!!! We're heading out in an RV and will arrive sometime on Sunday. How exciting!

This is also extra special because we have family AND friends joining us on this once-in-a-lifetime trip for Emily. My parents, my oldest sister and her husband and 5 kids!, and some very good friends/Emily's nurse with their baby girl will all be participating in this high-speed Florida expedition (complete with smartphone Disney Apps, pinpoint GeoLocation, and live tweeting/blogging as @natedlee, of course!)

We'll be in FL for a week enjoying all the fun the Disney parks have to offer. Give Kids the World is the extremely accommodating place we'll be staying while we're, which caters specifically to disabled families visiting the area..... all I needed to know is that they have free Breyers ice cream 24/7. :)

Anyway, we are so excited to have a crowd with us to celebrate Emily's life through this super-fun trip. Thanks for joining us: Mom/Dad, Kevin/Wendy, Steve/Krissy, and company. You're the best!

Wednesday, March 03, 2010

Help :: Jump Rope for Heart

Hi, my name is Annabelle and I’m in 2nd grade at Bellows Spring Elementary School. I’m raising money for the American Heart Association through Jump Rope For Heart. Jump Rope For Heart raises money to help kids with special hearts. The money I raise will help pay for new medicines and treatments to be discovered. It could help cure heart disease – for everybody!

Will you please help me be a Heart Hero? When you give money you can help kids with special hearts! Will you please help me save lives and make a donation? Please visit My Headquarters Page to donate!

Thank you! :)

Tuesday, March 02, 2010

News, Make-A-Wish, and a Court Hearing #SMA

Wow! We are so happy with how the WBAL news segment turned out!! Please take 5 minutes to check it out (or click here for the YouTube broadcast) if you haven't already. Basically, we've been battling our insurance carrier over skilled nursing coverage in our home and I turned to WBAL to see if they'd be interested in doing an investigation, and you can see the result. Yeah, the situation sucks, but this is good press for Spinal Muscular Atrophy (SMA) and everyone needs to know how disabled families can easily be bullied by these MULTI-BILLION DOLLAR insurance giants.

We've received our final approval for Emily's Make-A-Wish trip!! Yep. We'll be heading to the sunny south to take in the sites of DISNEY!! WooHoo!! And, yes, we'll be sure to... oh... I dunno - maybe blog and tweet while we're there. ;)

The other thing I haven't been talking about is this: we are going to court against CareFirst insurance over the denial of skilled nursing. We have navigated the formal and proper appeal and grievance process with both CareFirst and the Maryland Insurance Administration, as you can read in this previous post, which has lead to my requesting a court hearing with the Insurance Commissioner.

So, on 20 Apr 2010, the burden is on our family to show that CareFirst has done something unlawful by determining Emily has no qualifying medical needs for nursing and consequently canceling her nursing coverage. We'll be working on things until then.

I've been asked why we'd continue to fight this even though Emily's nursing is now covered under Maryland Medicaid. Well, if we can set some precedent for other families that are faced with this same crappy, unethical situation hopefully they'll find some comfort knowing there are other families fighting the same battle - and that they SHOULD NOT TO GIVE UP!

Let us know if that's you and maybe we can find a way to help you fight too. :)

Monday, March 01, 2010

We're on the news tonight!! #SMA

Don't miss Emily on WBAL tonight!! The I-Team is doing a special on Emily, Spinal Muscular Atrophy (SMA), and our struggles with CareFirst insurance and the Maryland Insurance Administration.

I'll post the video after they put it up. In the meantime, watch the primer.

Gene Therapy Research for #SMA!!!

E take a minute to read how gene therapy is reversing the effects of Spinal Muscular Atrophy (SMA) in mice models. We are SO close to curing SMA!!! Praying for a cure.....
COLUMBUS, Ohio – Reversing a protein deficiency through gene therapy can correct motor function, restore nerve signals and improve survival in mice that serve as a model for the lethal childhood disorderspinal muscular atrophy, new research shows.

Within 13 days after the injection, 90 percent of the treated mice had the muscle coordination needed to right themselves as quickly as normal animals. By this time, untreated SMA mice already were suffering symptoms that left them unable to right themselves. The day-1 treated mice also were nearly identical to normal mice in their ability to run on a wheel.

Thursday, February 25, 2010

An Introduction to Spinal Muscular Atrophy #SMA

Tuesday, February 23, 2010

What I love about my family #SMA

A note from Emily's big 8-yr old sister, Annabelle:

I'm Annabelle and my sister Emily is a Joy to have in my life. Another joy is the music in my family. My family has great musicians! I love my family so so much they cheer me up when I'm down! Definitely, Emily is one of the first people I go to when I am hurt. I live with my sister Emily, my mom Diana, my dad Nathan, and my two fish.

That is what
I love about
my family

Sunday, February 14, 2010

It's double V-Day!! #SMA

That's right! It's Victory Day AND Valentines Day. :) We're heading home from the PICU.

We are still waiting to hear back on some lab results for infections, but the Tobramycin and Orpred have either worked or Emily's just getting over whatever she had. Either way, we will be home in a few hours.

As always, thank you very much for your thoughts and prayers.

- Posted from my iPhone

Saturday, February 13, 2010

Waiting on lab results #SMA

Emily had an ok night. She's getting respiratory treatments every 2-4 hrs and needs quite a bit of coughing, but she's so happy - probably b/c we said "No IV's this time." I'd be happy too. :)

So they've ruled out RSV and the Flu, so we're waiting to hear back about Pseudamonas and some other nasty stuff. Regardless, we've started Tobramycin and Orapred to try an kick whatever this is.

- Posted from my iPhone

Friday, February 12, 2010

Taking Emily to the PICU... #SMA

So, we're off to the PICU again. Yay. :/

- Posted from my iPhone

Saturday, February 06, 2010

Snowpocalypse 2010!!!

We are COMPLETELY enjoying this huge snowfall. This is the part of God's creation that I am most fond of. :) Emily's sick, so we didn't get to do much as a family outside, but we managed to snap some pictures. Hopefully we won't be stranded at home too long, but the electricity is on and our utilities are working... we're doing just fine.

Thursday, February 04, 2010

MRSA and Lyme and Snow, OH MY! #SMA

Ugh. Please keep us in your prayers. Diana has tested positive for Lyme disease and MRSA; Emily has come down with something that caused a major desat at 2:30 this morning; and we have snow headed our way which brings some anxiety if we need to get to the PICU in a hurry. Poor Annabelle is an infected finger too, let's not forget about her needs :/ We're tired. Thanks.

Wednesday, February 03, 2010

January was full of surprises (#SMA)

I can't believe this month is over. I also can't believe how hard it is to consistently blog, so Good On Ya, mates, that have the personality and tenacity to keep your audience stimulated.

We've had a whirlwind couple of months with an incredible amount of emotional and intellectual stock invested in Emily's well-being. Let's just cut the story short and say that I hate mankind. We suck. Our ability to make extremely complicated systems that cripple the GOOD in this world gives me a perpetual need to vomit. It sucks that we have to FIGHT for good, while the bad just has to exist to screw things up.

Now that I have that out of the way -- this month has been spent battling for Emily's life -- but what's new, right? After MANY phone calls, emails, faxes, text messages, appeals, calling people on lies, recalling and recording Emily's history, and so on.....

Emily has been accepted onto the Maryland Model Waiver for 8 "global hrs" of nursing, per day, 7 days/week. - which means any time of day! And, CareFirst has agreed to cover 12 global hrs until she has transitioned onto the Waiver, until 2/26.

I have to say -- I thought I would faint or something when I imagined getting news like this. But to be honest, after my small victory breath, but my neck and back muscles remained rigid and my mind turned to the other things that haven't been settled - as well as the unexpected surprises that we have yet to face.

HOWEVER, getting Emily into the Medicaid Model Waiver program is a big win for us. We met with our new coordinator yesterday and it was so incredible to hear that someone is going to help us with the constancy of Emily's plan of care, and fight on our behalf to get the things we need for Emily.

The nursing battle isn't over yet. I have also appealed the Maryland Insurance Administration's determination that b/c Spinal Muscular Atrophy (SMA) is terminal, they will not enforce services such as nursing. Insane. So, out of principle, I will continue to fight these issues and hope to help prepare a more friendly state for other families in situations like ours.... more on this point at a later date.... we have some buns in the oven, so to speak.

Emily's power chair is also supposed to be delivered in the very near future. CareFirst came through on that one and Emily is getting a very appropriate chair for her needs! This will be great for her by giving her some ability to exercise more and more independence. I can't wait to post video of her zooming around. :)

Saturday, January 23, 2010

Happy Birthday Annabelle!!!

Our big girl is 8!!! Annabelle, you are the most selfless little girl I have ever known. You are a blessing to us and everyone that meets you. Linnea and Emily are SO privileged to have you looking out for them. :)

- Posted from my iPhone

6th Place for Gwendolyn Strong Foundation and #SMA

CONGRATULATIONS Gwendolyn Strong Foundation!!!!

Well, It's OFFICIAL! Take a look at and you will find that the Gwendolyn Strong Foundation has won 6th place and $100,000 to accelerate a CURE for this cruel disease called SMA.

Not only is this $$ for SMA research, but in INCREDIBLE effort means of spreading awareness about this terrible disease. Thanks for all the votes, thank you for spreading the news about SMA, and thank you for participating in our lives and the rest of the SMA community! :)

Thursday, January 21, 2010

It's not too late to #VoteForSMA!! #SMA

Hey everyone -- I am PLEADING with you to vote for SMA in the Chase $1MM giveaway on Facebook if you haven't already. Please take a moment to head on over to and cast your vote which could win the SMA community $1,000,000 that will go towards research and family support for this terrible disease. Remember:
  • SMA is the #1 genetic killer of kids under age 2
  • 1/6,000 kids are born with SMA (that is an estimated 10,000+ kids that die each year from Spinal Muscular Atrophy!)
  • 1/40 people carry the gene responsible for SMA. That could be YOU
  • There is NO TREATMENT and NO CURE for SMA :/
  • BUT, NIH says SMA is the disease closest to a cure.
Please vote and tell your friends. Voting ends tomorrow, 1/22! Also, head over to the blog to read more about this competition. The support we've generated for SMA through social media and networking is down right AWESOME!!

Friday, January 15, 2010

Vote for #SMA !!!

I really really really want to tell you about the eye-gaze system Emily tried out today, but I want even more for her to not need one.

So, PLEASE vote for Spinal Muscular Atrophy (SMA) in the Facebook Chase $1,000,000 giveaway to help find a cure for Emily's disease, the #1 genetic killer of kids under two - which has already claimed the life of one of our precious girls, Linnea.

NIH says SMA is "the disease closest to a cure"!

Don't delay, and please spread the word.

- Posted from my iPhone

Tuesday, January 05, 2010

A Sovereign Surprise

-- A message to my family from my dad --
Dear Friends and Family: Some of you know I appreciate Proverbs 16:9: "In his heart a man makes his plans, but the Lord determines his steps." I remind folk that God is a "Sovereign Surprise" God in that most of us could never have planned how our lives turned out!

Well, my life has been wonderfully surprising in every way...but now I'm facing another surprise: I've been surprised with the news that I have prostate cancer. Wouldn't you know...those with this cancer in their family (my Dad had it but did not die from it), Scandinavians, and just plain old American men are all good candidates for it...I happen to fit all three. This was not my plan for the next chapter of my life, and, as some on this email have experienced, this is a surprise I could have done without. There's good news and bad news:
  • the good news? It's been caught early thanks to a PSA test (men - be sure to get that annual test!). I had a biopsy and a very small percentage of the 2 (of 12) tissue samples had cancerous cells. Early detection is always good news with this cancer.
  • the bad news? I have cancer...the #2 men's cancer, in fact. It's definitely deadly if not contained.
Nancy and I go to Walter Reed on Jan 4 for a day-long consult where all the options will be spelled out. I also hope to go to Johns Hopkins Cancer Institute tor a second opinion. My research so far tells me major surgery may be in the plans...

I'd ask for prayer as I comprehend the prognosis and treatment options. Pastor John Piper wrote a piece on cancer just before he went in for prostate surgery some time ago. One of his points was "You will waste your cancer if you do not believe it is designed for you by God." What else can we think but that this, too, is a "Sovereign Surprise" from the hand of God? Pray I will practice what I preach!

Your love and friendship is cherished...may all the Sovereign Surprises in your lives not surprise you too much... and may these celebratory days of Christ's birth bring you much joy as you enter the new year!

Blessings, Doug

Douglas E. Lee

Saturday, January 02, 2010

At Home and More About Skilled Nursing... #SMA

First -- Emily is home. Not even 2 hrs after arriving at home Emily's oxygen saturation started dropping and her heart rate started climbing. Ugh. We thought maybe she caught something while in the PICU and now it decided to show itself to us. We packed everything back up and started arranging something for a very sad almost-8-yr big sister. SUCK! We decided to continue at home and do treatments all night with supplemental O2. That turned out to be a good decision. Maybe Emily was just REALLY tired or something, but we are back off O2 and she has been quite happy today. Her BiPAP settings are still elevated, but that's ok for now.

Current Nursing
: Like I said, after submitting a new request for nursing since we were in the PICU, CareFirst extended the benefit for only 30 days. In the meantime, our primary nurse is not available for the next 2 weeks, and there are no backups. Yay. :/ So, we now we are switching agencies b/c in the last year the current one hasn't staffed one new nurse that has stayed with it. Ahhhh - so we have NO nurses, and will probably have to train new ones while in recovery from the PICU - while maintaining her recovering ourselves around the clock. Tis life. Not sure how that is going to work out.

Nursing Grievance & Appeal: So when all this crap started I submitted a formal "Grievance & Appeal" with the Maryland Insurance Administration (MIA). They gathered information from us, CareFirst, home nursing agency, and our Dr and contracted a third party reviewer, MAXIMUS CHDR. So I was informed that they determined there is "no skilled nursing need" as well - but I wanted written acknowledgment of Emily's needs with an explanation as to why there was no qualifying medical needs. Today I received that letter. I'll summarize a few things here.

The letter provided thorough acknowledgment of Emily's needs as we had presented them. A Pediatric Neurologist was consulted for the review, which I think it unfair b/c SMA families primarily deal with Pulmonologists b/c the complicated care of SMA is mainly Pulmonary as a result of muscle weakness. So, there is no reason for maintaining health, and ultimately life, when you look at SMA purely from a neuromuscular standpoint. There is no therapy that is curative in nature for SMA, so neuromuscularly there is nothing to be done.

The medical evidence has nothing to do with neurology!!

In summary, MAXIMUS determined the following:
... there is no known cure for Spinal Muscular Atrophy (SMA) ... consequently, Emily's care would be considered "custodial in nature and not therapeutic" ... the care is "comfort care and is not curative in nature" ... so, skilled private duty nursing services are not needed and "home health aids would be more appropriate to help manage her care."
So, there you have it. Based on some neurologists recommendation, since SMA is not curable, otherwise qualifying needs are determined to only be for "comfort." Translation: Because Emily will eventually die from SMA, CareFirst is not responsible for providing life sustaining support b/c it is not "therapeutic" or "curative." Is that a loose interpretation? I don't think so. So, MIA has determined there is no medically necessary need for Private Duty Nursing and CareFirst is off the hook.

Special Note: This is how one part of our government system has come to the conclusion that Emily's care is being properly rationed by CareFirst based on their beliefs about her survivability -- in other words, they are determining how we can care for Emily due to her diagnosis - NOT her medical needs. There are other parts to our government system, however, and I plan to become quite familiar with them in very short order. This is not over yet!

Friday, January 01, 2010

Going home!! #SMA


- Posted from my iPhone

Day 5: Sinai PICU (going home...) #SMA

We've decided that it's time to go home. Emily will still require more frequent treatments and increased BiPAP time, but we can manage with the home nursing and she'll be more comfortable there anyway. :)

So, time to go!! Thanks for all your thoughts and prayers. I'll try to update as the days go on.

I wanted to note a couple of things we have learned while being here:
  • Emily loses about 12oz/day of fluid through drool and suctioning. The staff was worried about Emily retaining water, so we did some science by weighing drool napkins and measuring the suction cannister. Add in sweating, breathing, and diapers and you get a much better measurement for fluids lost
  • If we bleed O2 into Emily's BiPAP tubing, 4L of extra O2 only amounts to about 31%. Keep in mind that 21% is room air. So, 4L of supplemental O2 may not be as much as you think.
  • A good way to maintain calories even when doing so many treatments like this is to use less water in the feed mix and supplement with IV fluids. That way you can run a slower rate and not worry about missing calories at the end of the day.
- Posted from my iPhone