Friday, December 23, 2011

A Merry PICU Christmas (#SMA)

So, we decided to bring Em to the hospital. We're praying it will be a Merry Christmas at home, but either way Belly is now on her way to Nashville with my parents to be with the rest of the family.

I'm not going to bother counting all the Holidays we've spent in the hospital, but this will make 4 Christmas's in 6.5 yrs. At least we're keeping tradition! We are super thankful this is only the second PICU visit in just short of 2 years, so we'll knock this out and get back home before Santa has a chance to start hibernating.

We're not sure what's going on, but this season has been tough on kids, even more for kids with Spinal Muscular Atrophy (SMA). With all the RSV going in we didn't want to risk it.

Thanks for your thoughts and prayers. We'll be updating most frequently on Facebook but I will post summaries here.

Wednesday, September 21, 2011

Linnea: Anniversary # 7 (#SMA)

It's been 2, 557 days since Linnea meet Jesus and we still think about her constantly. She seemed so perfect in many ways, despite her weakness from having Spinal Muscular Atrophy (SMA). I can't believe she'd be 8 right now! :)

Saturday, September 17, 2011

Lynn Wheeler Golf Tournament for Emily!! #SMA

We are getting pretty excited here at the Lee home. In less than a month we will be heading down to Georgia, once again, to take part in the Annual Lynn Wheeler Golf Tournament on 10 Oct!!! Doug and Lynn Wheeler, and everyone that participated last year blessed us beyond measure by holding the event for Emily. We are humbled by the fact that Emily has again been chosen as the beneficiary of this year's tournament. The Wheelers are an amazing family, and we were so happy to get to know them a bit last year.  Keeping up with Lynn's updates throughout this year has been quite encouraging in the midst of all that life brings. Thank you so much Lynn and Doug.  You both are an incredible testimony of love and Godliness to us all. 

So, if you have some time - we'd love for you to come and join us this year at Planterra Ridge Golf Club in Peachtree City, GA for the Lynn Wheeler Golf Tournament. Details for the tournament are in the images below, but you can also click on the above link to check out the Facebook page for the event. 

I also want to thank Joseph Starr for his insane planning abilities, and for bringing this entire event together. Jojo - you're amazing. See you in GA!

Monday, August 15, 2011

Linnea - Another year gone by #SMA

It is that time of year again - when we remember what we have lost - Linnea - she would be 8 years old today. The reality is - I'd prefer to not have the experience to blog about, but on the other hand I would not give up the time we had with her. Figure that one out. I attempt to make sense of this daily - like maybe I "know" something I didn't or I look back and say that I have gained something positive or "grown" from it - but unfortunately, feelings of loss are far greater than intangible feelings of growth. This is not doom and gloom - it just is.

Today, we just exist - and move on as if it's any other day - only feeling substantially heavier - like weights are attached to our feet, thoughts, hands, heart, eyes - and any other physical/metaphysical thing that makes us utterly self-aware.

There is one silver lining for me! Thanks to modern technology it is easy for me to look at these pictures and remember her deeply. Thanks for checking in. Down with Spinal Muscular Atrophy (SMA)!

Friday, July 15, 2011

HAPPY 6th B'day, Emily!!!

Emily had a GREAT time sailing for her B'day today. So amazing that she is 6 years old now!! The Baltimore Sailing Center did an incredible service for Emily by taking us out - and to think, they do this regularly for disabled kids. Completely awesome. Thank you so much!!

Sunday, March 20, 2011

Day 14: Home at last (#SMA)

We are home at last! 2 weeks ain't bad to be sick ad infected with Human Metapneumovirus + ear infection + pneumonia, intubated, extubated, and back home. We faired well and are grateful to God that all went as well as it did. This part of our story with Emily could have easily had another ending.

So we learned a few things this particular stay:
- Breast milk can be given to kids up to two hrs before operative-type procedures b/c it is considered a "clear liquid." This is phenomenal for folks like us who need to maximize Emily's nutrition surrounding intubation/extubation procedures and can not afford to fast their child for more than 4-6 hours.
- hMPV sucks. It is somewhat uncommon and there is no vaccination or treatment - it needs to run it's course - and it sometimes kills perfectly healthy kids with it's veracity. Also, hMPV almost always coexists with other respiratory viruses like RSV, or the Flu. Another good reason to keep your hands washed, coughs and sneezes to yourself, clothes changed if you've been at work or school and live with someone who has a fragile respiratory system, and clean items that person may come in contact with.
- Sinai: a) can intubate and extubated Emily successfully and works with us in the process b) continues to have the best hospital food around c) needs a Cough Assist in their PICU!!
- We continue to be blessed by our community through meals, prayer, visits, caring for Annabelle and our house
- Dr. Schroth continues to be a God-send for families with Spinal Muscular Atrophy
- So many other things....

Thank you for your thoughts and prayers. If I don't remember to thank you specifically for something you have done for us, thank you for that thing as well. :)

- Posted from my iPhone

Saturday, March 19, 2011

Day 13: My girls are sleeping (#SMA)

My girls are sleeping, b/c everything is going well. :) Emily's extubation appears to have been successful and I think we are all ready to go home. The Dr. wants us to go home with nursing ready to help upon arrival because we "look exhausted." So, we may be waiting till Monday. In any case, we're getting Emily's feeds back to normal, her BiPAP settings are like home, and we're planning to spend some time off the bipap this evening.

- Posted from my iPhone

Friday, March 18, 2011

Day 12: Extubated! (#SMA)

We made it! - And Emily looks great! This literally just happened, so we have to see how things go today, but it went well and she is relaxed and happy. Now for the frequent coughing and suctioning until she's all cleared out. Noninvasive ventilation is often entirely more precarious than invasive ventilation.

- Posted from my iPhone

Thursday, March 17, 2011

Day 11: Extubation tomorrow (#SMA)

So it looks like extubation day is tomorrow, day 12.  We are very excited, and a little anxious.  The last couple of days were VERY good for Emily, and a little stressful for us, for various reasons.  The important thing is we have a plan that works for all involved and Emily will start straight breast milk 6 hours before extubation.  We can't do regular feeds for fear of aspiration, and her IV's keep failing, so we don't want to risk trying PPN and losing an IV they need for medication.

We were very concerned about Emily's nutrition plan for this event, and one of our nurses (thanks Loni!) recommended we use breast milk b/c we can feed Emily closer to extubation. This was an excellent recommendation b/c we have a lot (thanks to our donor) and it will ensure she gets maximal nutrition, keeping her strong for the transition back to her BiPAP.  This is something we've never thought of, and a good trick for SMA families, or others, who are negotiating nutrition plans before and after extubation. Breast milk is considered a "clear" liquid and is allowed during the perioperative period.

So, Emily has hardly slept at all since Tue night (maybe 3 hours total!), but she has been super happy and observing everything, and everyone, with the utmost interest.  She is so curious.  She has been off sedation for two days now and just handles everything really well - after all, she is a veteran at this.

I predicted almost a week ago that we'd be home in a week -- I hope I'm right! If I'm not we won't be running out the door though.

Thanks for your prayers, and thanks for the meals delivered to our house this week!!  (don't forget to follow Diana or I on Facebook for more frequent updates - and more PICTURES!)

Monday, March 14, 2011

Day 7: Some troubles, but all clear by end of day

Day 7 was Sunday. Emily had been doing so well and we had managed to come down on her vent settings, but Sunday morning things started changing.  Emily started sweating, was very uncomfortable, needed more supplemental O2, and so on -- not fun.  Something needed to change.

When Emily was intubated they said they put a smaller Endotracheal tube down (see pic) and that there may be some leaking around the balloon that inflates in the trachea (C), but that it shouldn't be a problem.  Well it turned out to be an issue for a few reasons: 1) The balloon needed too much pressure to minimize the leak, 2) it is harder to exhale through a smaller tube, 3) and there wasn't much tube to manipulate at the mouth (A).  I believe it was becoming increasingly difficult for Emily to breath properly, even though she was being vented.

Anyway, a long-story-short -- We needed a tube change so we could plan her vent time more efficiently. That is not a trivial thing when working with a child like Emily who has a difficult airway (see floppy airway) -- Emily is difficult to intubate and it always requires the most skilled of anesthesiologists to get it done. They take no chances with difficult airways. So changing out a tube is risky.  However, all went well. :)

Emily has been doing much better on the larger tube. All of her numbers are better and we have weaned her pressure support back a little bit to start letting her body take over more of the breathing responsibility. SMA kids should not stay intubated too long b/c there is a potential they could atrophy more and have a difficult time coming off of the vent. When extubation time comes, we will extubate straight to BiPAP and she will do great. For now she is still pretty sedated to minimize her discomfort and anxiety, but that will need to be weaned before long as well. All in good time. :)

Emily also has continued low-grade fevers - part of the infections and virus process. As I am sure we all know, fevers really zap your energy - and it's been 12 days for Emily. :/

Thanks to the staff at Sinai for such great care of Emily AND Diana and I! -- to my parents for all of their incredible help with Annabelle - house - dog - fish - etc, for meals that have been provided, the donations to help with Emily's care, the visits from family and friends, the memory foam mattress to use on our non-comfortable chair/bed thingy, and for your thoughts and prayers. How long we are here all depends on how Emily does - I am hoping for less than a week more!

Please pray for everyone's health, Emily's vent and medication weaning process, rest and sanity for us, and comfort for Annabelle while we are not getting to spend a lot of time with her.

Peace <><

Saturday, March 12, 2011

Day 5: Much Better

Friday was a great day for Emily. Her fevers stopped for almost the whole day, and her need for sedation went from 1-2 hrs. to 3-4 hrs. She was awake at times, not quite aware, but opened her eyes for a couple of minutes.
Thank you for the prayers, because it's great to see her fevers stop. Her temp started to creep up a little on Friday night, but not too much. If Emily can keep this trend and just ride out this metapneumovirus, that would be good.
Annabelle got to visit for a little while! I was surprised that she was hesitant to touch Emily, but she was much younger when she saw her intubated last. However, her precious sister's soft skin drew her in, and soon she was right next to her. : ) When Annabelle is sad or hurt, touching Emily's soft hand or ear helps her feel better, so we were glad to see that some physical contact was made.
Let's pray and hope for a smooth weekend. : )

Thursday, March 10, 2011

Day 4: Continued fever and longer stay

Day 4 Sinai PICU
It's 5:25pm, and Emily is continuing to rest due to constant sedation. It's very uncomfortable to have a tube down your airway, so they sedation is constant for now. We do have a video of her playing with a balloon while intubated back in 07/08 winter, but she is not there yet : )
We don't know much about Metapneumovirus, since it seems to be a fairly new virus, but it seems to be worse than RSV. Our pulmonologist in Wisconsin said that Emily could potentially be here for another few weeks! Oh dear... that means we have to switch up our system, and start thinking not day to day but week to week, as far as Nathan and work, Annabelle and care, etc...
Thankfully, Grandma has had time to stay with Annabelle this week, but we night have to work on other options next week...
Thank you for the continued prayers for our precious radiant little girl. She hopefully won't remember much of this experience... just the part when she goes home would be nice.

As for prayer requests: please pray for her fever to break. She has had constant fever for 7.5 days now. It's not high as it was when she was home, but the constant fever is really concerning. Therefore, more tests are being done... And that our stay will be the right amount of time for Emily to get better, but not any more than that!
~Continued strength and endurance. Sleeping shifts, being in a hospital with dry cycled air is tiring, and Nathan needs to get better. He still has a cough that isn't going away. He probably had what Emily has, and isn't contagious, but is working it out.

~Sinai is working with us as well as we can pray for, and the team is full of familiar faces, and when we call in, they always know who Emily is. The attending has been very willing, with conversations with our wonderful pulmo in Wisconsin to help our Attending truly grasp what we are asking for.
~Annabelle is handling everything well, with loving Grandma and Grandpa, who have embraced their own "special needs" life so graciously. It's amazing to have parents that love you without a blink, and take on what you take on without a question.
~Our family and friends, who are praying for us, and driving up to see us after my teary quick call and hang up right before her intubation. It's good to have the support!

Wednesday, March 09, 2011

Human Metapneumovirus = Crappy :: (#SMA)

  • hMPV is described by our attending as "similar to RSV" and "could get worse." Crappy.

  • There is no vaccine for hMPV. Crappy. 

  • If you are reading this - you are from my office - and was sick before or after me ----- you probably had or have hMPV. Crappy. 

Tuesday, March 08, 2011

Intubated (#SMA)


- Posted from my iPhone

Bug in her stool? #SMA

That's the question for today. Poor Emily has lots of diarrea so it begs the question. Theyre running some tests, so we'll see.

The one thing that we DO know us that Emily has pneumonia. What from is the mystery. Preliminary tests for Flu and RSV have come back negative, so we're still waiting on the regular tests to make sure. She is in two IV antibiotics for infection - Motrin and Tylenol for fevers.

Last night was rough and we discovered Emily was not getting enough fluids. Too much diarrhea and not enough humidity through the bipap dehydrated her to the point that thigs were not looking good. Extra restless, high heart rate, and heavy breathing were indications that something more was going on, but it's hard to tell when Emily is really out of it and can't communicate how she feels. After making some adjustments things have improved, but she is still really working hard and not very comfortable. No special Emily smiles, no glittering eyes and funnyness - just a sad cookie.

Thanks for your thoughts and prayers and offerings to help. Thanks to Erik for the visit and lunch. Thanks to my mom and the Vandenheuvals for spending time with Annabelle and Sunny. We are blessed to be so well cared for and loved.

Monday, March 07, 2011

Gig is up - to the PICU we go

So Emily has been pretty sick the past 4 days - fevers ranging 102-104 and just feeling pretty crappy. We decided we reached our limit and admitted Emily to our regular Sinai Hospital PICU. She's getting swabbed to see what's going on. Looks a lot like the Flu.

For more frequent updates feel free to friend me on

Thanks or your thoughts and prayers!

- Posted from my iPhone

Thursday, February 03, 2011

Extreme Van Makeover! #SMA

Hey folks. I hope you are doing well.  We are.  We've worked through some sickness in the house, but otherwise things are peachy!

So I am writing this post in preparation for a big event that is happening to honor Emily this coming Saturday, 2/5. The Mustang Club of Maryland is generously hosting an Extreme Van Makeover for Emily's handicap van -- they will be fixing up the van with some pretty sweet upgrades for our extensive travels!!  We are extremely excited and Emily is just going to love the new features. Lighting, carpet, sound proofing, DVD screens, disco ball (serious), some fancy new SMA-specific body trim I am dying to show you, and some other essentials for our travels.

A local news station, the county fire department and a few other Mustang clubs in the area are all planning on being there to lend a hand -- should be amazing!! If you're in the area and want to attend please let me know and I'll fill you in.