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. :)

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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.


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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.


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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!)

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 <><

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. : )

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.

Praises:

~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!

Human Metapneumovirus = Crappy :: (#SMA)

• The verdict is in - Emily has 
• Human Metapneumovirus (hMPV) (pronounced: meta-noo-mo-virus) -
  - AND 
• a middle-ear infection
  

• 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. 

Intubated (#SMA)

:*(


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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.

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 Facebook.com/natedlee.

Thanks or your thoughts and prayers!


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