No Broadcast tonight :/

I've taken a little break from blogging to get back into the swing of things at work... blah, blah.

First - there are a lot of sick SMA kids (and otherwise) in the hospital with RSV and various other stupid sicknesses. We're praying for them. Get better soon!

We started a weekly live broadcast of Emily's nighttime routine last week and it went over very well. :) We had 9 viewers for 1.5 hrs and went through tummy time, The Vest, Cough Assists, suctioning, administering medicine, and some other things. It was a lot of fun. Our plan is to do this once a week on a day TBD. I thought it was going to be Thur nights, but apparently not... honestly, b/c we watch Hell's Kitchen. :) Anyway, future shows will be viewable at:
http://www.ustream.tv/channel/emily-bedtime-treatments

We're are all doing well - getting back into the swing of things. A couple of things we're trying to get done for Emily:

• Powerchair
• Breast Milk for feeding (to replace Rice Milk) - denied by insurance b/c there is "no scientific proof that breast milk is beneficial to children" -- HA!
• Video attendance at school
• "Eye Gaze" system for communication

Thanks for stopping by!!

Peace <><

1) We're Home : 2) The Petition to Cure SMA

1. Yay! We are home. I don't have much to say for now, but we're getting back into the daily grind. Emily still requires frequent treatments, but we're off of supplemental O2 and stuff (hence going home), so it's just a matter of maintaining her recovery and keeping her happy. We came home to no nursing, so no relief until Tue or so. We're good. :)
   
   
2. I keep forgetting to make a note of this, but there is a Petition to Cure SMA that YOU ALL NEED TO SIGN! If you've been following our story and are wondering what you can do, please follow the link and sign the Petition to Cure SMA!
   

• SMA is an inherited genetic disease that results in loss of nerves in the spinal cord and weakness of the muscles connected with those nerves.
• SMA is the #1 genetic killer of children under the age of 2.
• SMA is estimated to occur in nearly 1 out of every 6,000 births.
• The gene mutation that causes SMA is carried by 1 in every 40 people or nearly 7.5 million Americans.
• There is currently no treatment and no cure, but the National Institutes of Health (NIH) and the National Institute of Neurological Disorders and Stroke (NINDS) have selected SMA as the disease closest to treatment of more than 600 neurological disorders.
• Researchers estimate that we are as close as only a few years away from finding a treatment and/or cure.

Thanks and Peace <><

JCMC: day 12 - Upon going home

Tomorrow's (Sat) the big day!  We've been planning our getaway all day and we're taking turns getting a few zzz's tonight.  My dad flew down and will be doing the driving (THANKS DAD!), so Diana and I will get to rest a bit on the trip.  It's supposed to be sloppy all the way up with snow, sleat, and rain, so we're praying for a SAFE trip back with no incidents for Emily, the van, or anyone else. 

Rather than typing a HUGE THANK YOU to the folks that have helped us during this time, please see the video below:

Emily @ JCMC: THANK YOU!! from Nate Lee on Vimeo.

JCMC: Day 11 :: Talk of going home

Yesterday, Day 10, was a good day.  We had some major plugging in the evening, but got through it ok.  I experienced something new with Emily that we've heard about and other parents have talked about, a "vagal" response when deep suctioning.  Emily usually doesn not let us get the suction catheter down her airway very deep, so when we suction down her nose it is usually about 13 on the catheter.  Well, yesterday I was able to get down deeper, near 20, and was able to get A LOT of junk out of her lungs.  However, Emily's heart rate and oxygen saturation dropped suddenly and she couldn't breath while the cather was down that deep, understandably.

Anyway, a vagal response is when the heart rate and oxygen saturation drop suddenly.  Vasovagal actually leads to fainting.  Even though I knew what it was, it made me a little nervous b/c it never happens with Emily, but I know that it happens frequently with SMA kids when they are pooping and/or when they are being suctioned. 

OK - anyway - the Dr. came in today and suggested we just head home tomorrow.  We feel more comfortable with a target day of Saturday.  We still need to ween her oxygen so she gets back to room air, and we are still getting plugs out of her lungs.  We'll see.  The plan, for now, is to head home on Saturday.  YAY!

I think that's it.  Hoping to go home soon.  

Peace <><

JCMC: Day 9 - Tiger and Clydsdale

Emily continued on her path to wellness today.  No more desats and stuff - just lung maintenence as we clear out the RSV crap.  Such a nasty virus! :/

So, Emily has a couple of friends that watch over her while she sleeps, a Tiger and a Clydsdale. Being just within her reach, she pets them and they in turn keep her company.  Apparently they are quite the conversationalists as well. :)  So, thought I'd post a couple pictures of this very important relationship:

Peace <><

JCMC: Day 8 -- Some pride can be good

Well, today was a good.  Emily was very playful and awake during normal times.  We had some good RT treatments and things were pretty standard, for being in the PICU and on the road to recovery.  

I labeled this post "Some pride can be good" b/c there is something we've experienced here that makes us proud to be Emily's parents and makes our countless hours of work with her worth all the more.  Pretty much every Nurse, RT, Doctor, and even a family that was here in the PICU has said, "Emily is blessed to have such dedicated parents that take such good care of her.  We don't see that very often here.  You guys are so loving and patient..." and/or something to that effect.  Of course it's always nice to get compliments, who doesn't like those, but I'm not writing this to get MORE compliments, but rather to reflect on the impact families like ours have on people around us -- good and bad.  

In this case, it is good.  I hope and pray that our dedication to Emily's life gives others, particularly parents, the willingnes, encouragement, and hopefullness that they can give others and/or their kids the care and attention they need -- b/c it's worth it.  BY NO MEANS does that mean that we are models of parenthood -- NOOO, we are not.  I, in particular, am a selfish impatient kid who happens to have an extraordinary task that I struggle to complete daily.  We are not, but I pray that God uses our circumstances, our willingness to broadcast our lives, and our encounters with others, as broken as we are, to make them think about what is actually important in life. :)  Jesus once said, "I tell you the truth, when you refused to help the least of these my brothers and sisters, you were refusing to help me."  

A fellow SMA dad and friend said to me on the phone the other day, "the PICU certainly has a way of motivating us!"  Indeed - it gives us an unusual time to reflect and see what in the world we're doing, who in the world we are, and where in the world we've come from.  And, for me, it brings me back to the reality of the impact my life has on others - especially when and where I least expect it.  I hope that I continue to remember this so God doesn't have to stick us in the PICU to remind me. :)  More importantly, though, I hope that my life - and all of this - draws others into a better knowledge of our Creator (that'd be the God of the Holy Bible), who gives us strength and encouragement to endure what often seems impossible and endless.  

Now on to some more respiratory therapy for Emily b/c her O2 saturations are lower than we want them to be.  Till the next post...  Peace <><   

JCMC: Day 7

Day 7 was good - so good that we mainly just played with her or sat and let Emily sleep while we watched movies or whatever.  

We also had some visits from friends and/or friends of friends -- it always nice to see familiar faces and have people take your dirty underwear to wash it for you... yes - we have met some nice people here and are being taken care of.  Thanks!

Peace <><

JCMC: Day 6

Not much to report today.  Emily had a great day except for about 1 hr that came from a bad mucus plug in her lungs.  I think we've cleared it, but now she's back up to 4L of O2 -- argh! Anyway, she babbling right now when she's supposed to be sleeping --- yeah, I'm talking about you, Emilybemilyhead!  Go to sleep, crazy!

Anyway - We're here.  Forgot to mention that Emily has a sadly sore bottom.  All the pooping from the antibiotics has really messed her up down there.  Poor little crazy - it's a tough area to heal, down there!  

Want to see what we do while we're in the PICU?

Play

Look at Emily's cute little feet

Take pictures

Sleep

Peace <><

JCMC: Day 5 :: Playin'

Today Emily has been all over the map.  She's mainly needed 4L of O2 to keep her sats up, but her xray looks decent, so no major concerns about spreading pneumonia or anything like that.  Chances are it is simply RSV flaring up and causing difficulty and fatigue for Emily.  

I spent the evening with Emily and did a little video of her playing with her balloon.  Mind you, in this video she has RSV, she is on BiPAP 24/7, and has 4L of O2 to keep her sats above 94.  Our kids can still have some fun, even in these circumstances. :)  

Emily playing on BiPAP :: RSV 2008 from Nate Lee on Vimeo.

 

Impromtu at the PICU

I thought I'd share a discussion that happens periodically when we are in the PICU.  A Resident Dr. came by to observe Emily and here's how the discussion went:

Dr: Do you mind if I ask you a question?

Me: No, ask away. :)

Dr: You mentioned that you had another daughter with Spinal Muscular Atrophy (SMA), and now you have another one. Did you consider genetic testing? I'm thinking of becoming a neurologist, that is why I am interested.

Me: Sure. We understood the genetic probability of having another child with SMA, but had decided we wanted to try for another either way.  

Dr: Couldn't they test in utero?

Me: Yes, but we didn't want to have the discussions about abortion that would follow, so we chose not to test.  We were comitted to having a child, with or without SMA. (long story followed about Hopkins doing the wrong test when Emily was born, etc, etc)

Dr: Do you not believe in abortion b/c of religious reasons?

Me: Yes, religious and ethical beliefs. (should have expanded at this point b/c I have A LOT to say about this)

Dr: Even though her care would be so complicated?

Me: I don't believe that I should only make decisions in life that bring me convenience.  If I made decisions that way then I'd be compromising my beliefs at every turn.  We know we can care for Emily, so we chose the possibility of a complicated life to care for another wonderful child.  Everybody's life is complicated, everybody has a choice in how they will deal with those complications.

Dr: Thank you very much! (thumbs up)

Me: You're welcome! :)  Thanks for asking!

----  So, there's a little window into the life of the Lees.  We are an anomoly (along with thousands of other families). We make people wonder and consider life a bit differently.  Not b/c we're great, or selfless, or anything else - but b/c our life is severely out of the comfort zone that "normal" people live in.  It's either a curse, or an opportunity... a blessing.  I may whine and complain and kick and scream at times b/c... THIS SUCKS!  These days I feel it's more of a curse (in my head anyway), but I know that it's not.  It's just what we have to handle in our life.  But, we believe it is the life God has allowed for us, for His good reasons. So, we press on and make it to the next day - after all, we all suffer.

Thanks - Peace <><  

JCMC: Day 4

Here we are, day 4 at the Johnson City Medical Center PICU.  Wednesday, in particular, went so well that we thought maybe we were homebound, but that may not be the case.  Half way through the day Emily's heart rate started going up and she was needing more O2, so now were up to 3L of O2 and back to respiratory treatments every 2 hours.  Each one lasts about 30mins or more, to give you an idea of our schedule.  The respiratory therapists have only been able to get in every 4 hours, but often are not able to stay long enough to finish the treatment.  So, even though this hospital is compliant with our plan of care and very kind, the Respiratory Therapists are:

• not familiar with our equipment (cough assist) and our drive for noninvassive ventilatory support (NIV protocol)
• not familiar with weak neuromuscular needs (they are different from other needs - VERY different)  
  
• severly understaffed from what we have seen this week.  They have had too many patients to care for to get adequately involved in Emily's care, or any other individuals care for that matter 

Anyway - Most of the respiratory therapists have been friendly, and that is nice.  A couple have taken particular interest in Emily and our level of care for her and they have been as helpful as they can be.  Today I had a frustrating conversation with one, however, when the appropriateness of our care of Emily was challenged.  Thankfully the words in my head didn't match those that came out of my mouth, but it was very frustrating to have to explain airway maintenence and clearance to a respiratory therapist.  I provided a copy of the Standards of Care for SMA document and pointed out the Pulmonary section.  Hopefully they will all read it and learn something valuable for future SMA families that might end up here. 

OK - it wasn't all that bad today.  My text above sounds kinda depressing.  We're fatigued and ... gotta get some sleep now.

Peace <><