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Hospital Update – Getting worse before it gets better

From Mark:

As we went to bed around midnight, I went off to the parent bedroom and Kate stayed with Getty. As Getty would fall asleep, her blood oxygen saturation levels (“sats”) would drop into the 80s (normal being 97-100, less than 95 being cause for concern, and less than 90 being bad news due to inability to breathe and absorb o2). They did quite a bit of work and extra treatments through the night to help keep her sats up.

When we first arrived, we thought an IV would be great to keep her hydrated and would allow easy delivery of meds. However, SMA kids are tough to stick with an IV because the veins are so tiny and the muscles are atrophied. After sticking poor Miss Getty in 7 different places with a needle, they gave up. All that crying for nothing. Poor thing. They tried again last night and got a stick, so that’s good. Now she is getting more hydration as she fights this.

This morning, Getty was still wheezing and moaning as she tried to breathe. She was having problems keeping her sats up, even with higher bipap settings and more O2 bleeding into the bipap line. We were doing more treatments, but we couldn’t do the treatments as well as normal because her sats would drop into the 80s every time we took her off bipap to try to cough her with the cough assist machine. Then she would have to do that much more work through her exhaustion to get herself back up into the mid 90s.

Adding to the complexity is that she is just plain tuckered out. She has not slept well at all since we have been here. We also have to wake her up to do the lung treatments, which probably contributes to wearing her out even more. She needs the lung treatments every 4 hours but she could have respiratory failure from sheer exhaustion. We kicked everyone out and this is mandatory Getty rest time. Kate climbed into the little pediatric bed with Getty and they are snuggling and sleeping together.

The doc came in an explained the patch of fog on her x-ray. The working theory is viral atelectosis (collapse of the lung sacs) as opposed to bacterial pneumonia because the affected area is “roaming” around her lung. If it was a bacterial infection, the bacteria would pretty much stay put on the x-ray.

The worst part of a viral infection is the third and fourth day, which is probably where Getty is now. So we expect today and tomorrow may be pretty rough on her, with some improvement on Friday.

Thanks again for all the love and support. Thanks to Grammy Nola, to Takoa, and to Morgan for stopping by for a visit.

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  • emily bilbrey says:

    thinking of you guys and sending very warmest thoughts. i can’t even imagine the struggle you’re enduring. but you guys are SO amazing and SO strong. sweet getty is lucky to have you! much love to all three of you from me & poppy. XOXOXO.

  • Anastasia L. says:

    I pray that you get home soon so you all can rest. I love you.

  • AUNTIE JAMA says:

    What a beautiful picture of our Getty girl sleeping next to mommie! I’m sure having mommie’s touch on her is so comforting…..our thoughts and prayers are with you for things to start getting better…and one more day closer to a “family homecoming”! Love all of you…………

  • Mark: Hugs to you and Kate and little Getty Owl. You are champions for your daughter and she is so lucky to have advocates and loving parents watching over her through tough times and fun times.
    Thanks for the update too – you have so much going on yet you take time to share – much appreciated.
    Randi Kay

  • Jen B says:

    Hope you all get home soon for a decent night’s sleep. Strength to you all.

  • Brenda Barberena says:

    Im praying and praying for you 3 <3 Please give her a little snuggle for me. (((hugs)))

  • JoEl Randall says:

    What a beautiful picture of Kate and Miss Getty sleeping. It just breaks my heart to see what you are going through. We continue to keep your family in our thoughts and prayers.

  • Amy E. says:

    De-lurking just to say that you are in my family’s thoughts and prayers. I found your blog through Girl’s Gone Child and her post on the benefit album. I have a little one with special needs (though different than Getty Owl’s) and I know how hard it is to have them in the hospital. Sending strength and healing your way.

  • We are keeping you in our thoughts especially in the night hours – –


    hoping for a better night to come,


    Nina and family

  • Mike, Michelle, Isabel, Claire, and More! says:

    Mark and Kate,

    Just want you to remember that your immediate and extended families here in SoCal are watching the blog, praying for you both and Getty, and of course, are always wanting the best for your family. You are all extremely amazing and we are so proud of your incredible strengths and your relentless willingness to share your experiences and make a difference for the pure betterment of humankind. Just amazing.

    You are obviously making an incredible difference in the world, one step at a time, and generally, we definitely need more of that kind of thing. As far as parenting goes, it remains clear that Getty has the best of the best of the best, and that is true excellence. As far as your immediate and extended local support goes, thank you all so very much for being there for my younger brother Mark and his family. We love you all, and we are incredibly blessed to have you in our lives. Take care… we know you will.

  • So sorry! All SMA Families know what it’s like to be in the hospital with their sick children – We pray for strength, comfort and healing for Princess Getty! Mark and Kate – you are both doing an amazing job; keep up the good work and we are praying praying praying and asking everyone to do the same.

  • Barbara Coffman says:

    I first heard about Getty and SMA through a Facebook post by Morgan Saunders last summer and I’ve been “checking in” on her and praying for all of you almost daily ever since. My thoughts are especially with you now and I just wanted you to know that total strangers like me have grown to love and adore you beautiful Little Owl and we are praying our hearts out for her!

    Barbara Coffman

  • Danna says:

    I pray that Getty starts feeling better and improving. Lifting you all up in prayer.

  • Getty Owl says:

    Thank you all for your compassion. We have been reading and re-reading these comments for strength. We so appreciate them so much.

  • justbekka says:

    Keep your chins up. You guys are doing a great job advocating for and taking care of Getty. She’s a pretty lucky girl. Hugs from NC along with some slobbery baby kisses, too

  • Leslie Stumpf says:

    Getty, Mark and Kate,

    We are thinking of you and will be sending our thoughts your way. Let us know if we can be of help.

    Leslie, John, Rachel and Sarah

  • The Carichoss Fam says:

    Thinking of you often and hoping the worst is over. Thank you for keeping us all updated. We are sending so much love your way!

  • Cedric Klein (FriarTed@SDMB) says:

    Day Three (?) of thinking & praying for Getty! Come on, Little Owl!!! HOOT!

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