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Exhausted and Thankful

From Kate:

Before I pass out of exhaustion, I wanted to update on where we are at in the Kaiser drama. As of 4pm today, Mark and I are allowed to suction, use the cough assist, and complete Getty’s treatment. We will be able to continue to give her the consistent care she deserves throughout our stay. We had an absolute angel come see us today who helped facilitate for us and to advocate for us. Jill, I am not sure how to thank you. I hope you don’t mind that I am thanking you in front of many people, but you need to be recognized for your willingness to fight for us. Bless you my friend and thank you.

Being in a hospital for so many days and then on top of that administering Getty’s care around the clock with treatments every 4 hours and then to be told that you can no longer care for Getty. Well I will be honest I seriously think I have aged about twenty years. I would love to say that I am fatigued, but that would be putting it lightly. You know when you get so tired that if you stopped you would just faint. Yep, that is how I would describe it. So as I write Mark is going on 3 hours into a nap. After he wakes and is up an at ‘um, it is my turn next.

Getty is doing better every day. Her lungs are slowly doing better and better. I know her treatments are making a difference and in time we will be going home, no question about it. Not sure when and I don’t really care. We are going at her pace. We tried Getty off bi-pap today and she held her sats for about two minutes. We were so proud of her. We try again tomorrow and then the next day and then the next. She is certainly in better spirits. I got a couple of smiles. She flirted with one of the RTs. She enjoyed watching Yo Gabba Gabba. And i think overall she is just happy to feel good enough to enjoy our company. There were a few days early on that I think cooing to us hurt and that broke my heart. But she was certainly chatty today.


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  • I am so glad to hear this! Take care of yourself! I hope Getty is all better very soon! (((HUGS)))

  • Thank you for keeping us posted! Lots of love!

  • Thank you for the update – hoping you can get some relief at some point….Nina, Mauro and Malena – SMA family whose also been “there”

  • caroline lamont says:

    So happy Getty is getting better!! so sorry you have been through such an ordeal 🙁

  • So happy to read this. Love you Getty!

    Kate, you and Mark are doing an incredible job. Praying that the rest you get gives you more than enough of the fuel that you need.

    Love you guys!

  • JoEl Randall says:

    This is great news to hear. Miss Getty fights for and dad, and you fight the fight for her. Continued prayers for all of you.

  • AUNTIE JAMA says:

    Jill ~ thank you for being that absolute angel that this family needed to move forward to bring “OUR MS. GETTYOWL HOME”! Kate ~ thank god you reached out~ because OMG THERE WAS JILL……hopefully each hour now can be devoted to helping Getty get STRONGER & STRONGER & letting Daddy & Mommy do the job that they know BEST HOW TO DO ~ HELPING GETTY TO COME HOME! We love you guys and our prayers are still coming your way even STRONGER…

  • Beth Andrews says:

    Glad little Owl is better. Please take care of yourselves too!

  • Melissa B. says:

    Jill ~ I just want to thank you on behalf of Getty and her family, they really needed an angel like you to intervene. I am SO glad that there are still Angels like you that walk amongst all of us and help when needed. Thank You!

  • SOOOOOOO glad you found an angel to help you out!!!!! I’m very curious if Jill is a lawyer or advocate and how she was able to help. This is a problem many families have come across and it wonderful that you were able to get it resolved. I’m nervous if we ever need to take Ally back to the hospital in how much they will fight me in caring for her now that she is trached and she may need to use the hospital ventilator vs. ours and they don’t like you to touch their machines. When she was NIV, I always was involved, but anytime we were on a hospital breathing machine, it would get trickier. We also fought over settings and o2 levels. I usually could find a doc who would support me, but hospitals can get way toooooo stressful and for the wrong reasons. Our prayers continue and I hope you will get a little rest and be home in your own beds soon (of course, when Getty is ready).

  • cedricmklein (FriarTed @ SMDB) says:

    So glad to read this news! Go Go Gadget Getty!!!

  • Jen B says:

    Delighted to hear that things are looking up and you’re allowed back in your rightful positions as Miss Getty’s primary CARE-givers. I think it’s so stupid that the hospital suddenly decided to fight you on this. I’d bet good money that it was the reckless RT who got scared to death of you after he screwed up, and he went whining to management about it all and they got nervous about being sued and decided to come try to “put you in your place”.
    On the flip side, be sure to thank the *good* nurses and techs!

  • AUNTIE JAMA says:

    Good morning to all!!!! Hope you were finally able to have a calm & pretty restful nite ~ without having to sleep with one eye open!! Grammy called last nite and said Getty’s coloring looked so good ~ and beautiful blue eyes had some sparkle to them! ~~~ Happy early 4th of July~~~ we will be thinking of all of you! Going over to see if I can get a Mt. Shasta 4th of July t-shirt for our little gal….they look pretty nice this year – light blue with a great pic of the mountain.
    Miss Getty ~ you are doing great & I’m sure with all the LOVE being surrounding you, you will be home soon………..Love from all the family

  • AUNTIE JAMA says:

    Hi Getty – got the t-shirt for you & it will go beautiful with your incredible blue eyes! Hope you & mommy & daddy are having a good morning…you are so brave young lady and we know you will be home soon…..HOOT HOOT TO ALL!

  • Great to hear things are getting better. We’ve had many of the same challenges at Johns Hopkins over the years – I swear I suffer PTSD as a result. Don’t these people realize that pushing back on parents like us is only going to be a bad thing — sheesh. We’ve since moved hospitals.

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