Thursday, December 31, 2009

Day 4: Sinai PICU (Skilled Nursing development) #SMA

Emily has continued to improve today and we've managed to come down near baseline on her BiPAP settings. :)

Now, the HOT HOT news for today is that, with this recent hospitalization, CareFirst has determined to extend Emily's Skilled Nursing benefit 30 more days! So we'll now have some wiggle room to figure things out further while maintaining the level of care Emily needs. We thank God for this decision today!!

Thanks for your thoughts and prayers!

- Posted from my iPhone

Tuesday, December 29, 2009

Day 3: Sinai PICU #SMA

Emily had a pretty good day. We were able to ween her O2 down to nill and started coming back slowly on her BiPAP settings. She is still pretty junky and we are pulling some very thick mucus out of her lungs, but the worst is definitely behind us now.

We know when we're over the hump when Emily starts getting bored and expressing regularly. :)

Monday, December 28, 2009

Day 2: Sinai PICU #SMA

Diana actually let me sleep most of the night last night, and I did -- like a baby - but grown up and on an awkward chair/bed thing with non-breathable fabric that makes you sweat when you're actually cold.

Emily, on the other hand, had a decent night and and even better morning. She's so pampered. ;) Her xray this morning look MUCH improved from yesterday and externally her chest looked more squared out then when her lung was collapsed. This is good. We were able to ween her Oxygen all the way back to 2.5 and she rested a bit. We had a semi-good B'day lunch for me -- and then things went south.

Emily had a pretty bad crash today and, in typical style, it was just after Diana walked off the floor. That's fine, but when she crashes it's nice to have two people. So, I yelled for help as Emily stopped breathing and her Oxygen saturation dipped into the 50's. :/ Sheesh! Thankfully we are Cough Assist ninjas and I got to work clearing some pretty serious mucus plugging out of Emily's lungs. When on the road to recovery JUNK starts to move in the lungs -- and migrating junk is like debris in a flash flood -- it's not good. In this case we were victorious and now Emily is trying desperately to get some sleep. It's not over yet, pumpkin. :/

That's the life of a family with Spinal Muscular Atrophy (SMA) in the PICU. Emily's on 3 different antibiotics and so far her blood and mucus cultures are all coming back negative. They may not reveal anything since we were on meds for a week before admitting to the PICU. Anyway, the bottom line is THINGS ARE IMPROVING -- despite how it may look, like earlier today, we are in an upward trend. :)

Thanks for stopping by.

Sunday, December 27, 2009

Day 1: Sinai PICU #SMA

So here we are - another Holiday season in the PICU. This will be the third year in a row, different hospital each year, that we've spent my B'day and New Year's night at the hospital. But, do you know what?! It's worth it as long as we have Emily with us! :) In fact, I think the only major holiday we haven't spent in the PICU with either Linnea or Emily is the 4th of July.

Anyway, poor Emily has a partially collapsed right lung with all the associated problems -- 4L of supplemental O2, increased BiPAP settings, lots of coughing, very very thick secretions, etc. We're doing treatments every 2 hours with the PICU staff and getting a bunch more cultures to see what's growing. Regardless, she is on Tamiflu and a new antibiotic. We're here, which is good. They cleared a bed for us b/c they were full, which we are incredibly grateful for. I am SO happy that we decided to not go back to Hopkins and found Sinai!!

Saturday, December 26, 2009

Going to the PICU :/ #SMA

We're heading to the PICU. Some sickness came on Emily pretty quick this evening. More to come...

- Posted from my iPhone

No, Mr. President: John Piper's Response to President Obama on Abortion

Tuesday, December 22, 2009

A quick December update

I've been putting this off with plans to post pictures, but here's a quick update without the pics.

We've been working hard for over a week to keep Emily out of the PICU. She's still been suffering frustrating coughing spells and thick secretions. Respiratory treatments every 2 - 4 hours around the clock seem to have been working, however tiring it may be to keep that up. Emily is on the mend, however, and it looks like we will be home for another Christmas. Yay!!

Thanks for checking in and Merry Christmas!

- Posted from my iPhone

Wednesday, December 16, 2009

You are not going to believe this... #SMA #insurance #CareFirst

Guess what! -- According to CareFirst BlueCross BlueShield Health Insurance, Emily has no medical need for skilled nursing care. Yeah. I'm not kidding. The letter of denial says that the Medical Director reviewed our Letter's of Medical Necessity submitted by Emily's Dr. and LPN nursing notes provided by our nursing agency to determine the following:
... The services provided by the private duty nursing are considered custodial. The patient received oral suctioning multiple times a day, occasionally nebulizer treatments and basic positioning ...
If THIS is what he determined from the paperwork submitted, I can only assume that he did not actually read any of it. Insane. The LMN's and nursing notes are EXTENSIVE - not to mention the common medical knowledge available about Spinal Muscular Atrophy (SMA)! Not only do they show that Emily requires frequent suctioning, 24 hours a day, to prevent Naso-pharyngeal aspiration, oxyhemoglobin desaturation, bronchial infection, pulmonary failure, hospitalization, or death - they also show that she is:
  • dependent on mechanical ventilation when sleeping and sick - provided via BiPAP- or she will go into respiratory failure
  • continuously fed via gastronomy tube b/c she has no ability to chew, swallow, or protect her airway
  • dependent on routine pulmonary treatments multiple times a day to include chest physiotherapy, nebulizers, a mechanical cough assist that is deadly if used incorrectly (or ambulatory bag), and postural drainage
  • highly susceptible to respiratory infections such as Influenza and RSV
  • unable to have a bowel movement without intervention
  • dependent on vigilant skin care and repositioning to prevent breakdown due to diminished tissue turgor and immobility
  • dependent on parents and caregivers for all activities of daily living
But there is more... the letter also gives examples of what IS considered medically necessary for skilled nursing. Among them are the following that, WITHOUT A DOUBT, apply to our situation:
2. Levine tube/gastronomy feedings.
3. Naso-pharyngeal and tracheotomy aspiration.
!! But, since this is the denial following an appeal, CareFirst will no longer hear anything on this case and we are forced to go through the process of submitting a formal appeal and grievance with Maryland Insurance Administration.

It is hard to believe that a company like CareFirst can get away with such blatant disregard for medical evidence and patient well-being. Throw in the added complications associated with the multiple severe disabilities Emily has and it is purely unethical at best. Decisions like these that deny medically necessary services to a child like Emily cause irreparable difficulties in her life and our family.

We are pursuing a few options to resolve this issue that I will not go into via the blog.

Monday, December 14, 2009

A great day! #SMA

Well Diana and others were praying hard and, we had a great day. I don't know what happened, but last night's symptoms played little to no part in the day. It's possible we thoroughly cleared her out, but we are just thankful it was a good day.

As we started the evening Emily was understandably tired since she hardly slept at all Sat night. She had a low fever, but that's it. None of the glue-like secretions!

Sleep well my pretty little girl!

- Posted from my iPhone

Sunday, December 13, 2009

Sick again #SMA (maybe #RSV)

Well this stinks. Emily appears to have come down with RSV. We do not know for sure, but the glue-like secretions, come-and-go fever, high Heart Rate, High Respiratory Rate, labored breathing, etc -- all indicate something like RSV anyway. Our insurance company finally overturned their denial for the RSV vaccination last week, but it appears it may have been too late - you know, b/c Emily isn't "high risk" for getting RSV. :/

In classic fashion, Emily is in good spirits. Every year we deal with these scarier illnesses she's a bit older, so the experience is always new.

Anyway, we're doing more frequent treatments (~Q4) with thinning nebulizers like Pulmazyme. She's tolerating her feeds well, so hopefully we'll just get through this thing sooner than later. We've been on the phone with our PICU in case we need to bring her in though. Nothing like another Holiday season in the hospital to continue the Lee Family Christmas story!!! ;)

Tuesday, December 08, 2009

A new site for Linnea #SMA

I just launched this "new" site for Linnea using Google Sites. Basically I took the content from the old page and gave it a new look - and it is now accessible via I think it's easier to look at. :) I've been wanting to move the information for quite a while. I may add some more information or thoughts about her to the page from time to time, but for now it serves as an historical digital momento of our life with Linnea. We still miss her each and every day.

If you are looking to create some simple but nice pages for yourself - check out and you can always let me know if you need some help.

Peace <><