So the most popular questions by a landslide are along the lines of “Why can’t Piper come home?” and “will she always be on a ventilator?”.
I think I kind of made the mistake in my last post of making it sound like we have the option of bringing her home and we just choose not to. That isn’t the case at all. Having Piper Jane at home isn’t even possible at all right now, not because we have chosen that, but because it is much too dangerous and risky to have her out of an acute care situation. Her doctor wont even let us, and we trust that it is in Piper’s best interest to not argue with that decision. We wish we could, but we can’t.
Piper is missing half of her ribs, she has severe scoliosis and kyphosis. The majority of business going on in her chest/spine area is a little jumbly and funky, causing a lot of problems with her breathing. Her lungs can’t expand all of the way, so she can never take a deep breath. The ventilator gives her a higher percentage of oxygen (normal room O2 percent is 21%, and she gets 28%), and a higher volume as well to make up for the short/quick breaths she has to take. She used to have extremely high vent settings, her O2% was around 60, but was weened significantly when she was about a year and a half old. Unfortunately, since then she hasn’t budged at all with the weening. Absolutely no progress at all. Sucky.
Until she turned one, she was on a gigantic Ventilator called the Servo i. It was huge and not portable, so we couldn’t take walks or bring her out of her room. If she was still on that, she wouldn’t be able to go to school or be taken out for therapy. Switching from the servo to the portable vent was a huge deal for Piper Jane. We were very excited.
Yes, sometimes people live at home on ventilators, but they are obviously not as sick as Piper. She is doing great, really great, but easily will still turn blue if she is disconnected from the vent for any amount of time. She is so dependant on the support she gets from the ventilator, that it is just very dangerous to have her away from a hospital.
And next. We have no idea if or when she will come home. No idea. Neither do her doctors. No idea.
We’ll have a better idea If/When Piper Jane can get off the ventilator. When it happens, we’ll let you know and then we’ll have a party.
With the vent, like I said, she is completely stagnant with her settings. CCMS is so rare, and Piper’s case seems to be the most severe of any cases still living, by a lot….so the doctors don’t really have much to go by. With a more common disease, they might be able to compare cases and see when progress can be expected, but with Piper Jane (and you all know this by now….and love her to pieces for it) she is her own spunky/unique/individual Pip that can’t be figured out. She has made us all very VERY aware that she is doing everything on her own watch. Just when we think we have her number, we are completely thrown for a loop. Way to go Pip.
I hope this answer is thorough and that you will stop asking me when she is coming home, haha! (I guess I don’t really blame you)
For the record, you all asked nicely 
She is gorgeous– in the photos she has SO much personality. I’m sorry people are asking those questions.
When you say (type) Pip, are you saying Pip like Sip, or Pip like Pipe?
and Pippy. is that Sippy or Pipe-ey??
Just want to get it straight in my head!!
@cm: hhahaha. Like Sip and Sippy. This is my favorite thing ever.
I discovered you over at CJane and fell in love with your little Pip. I admire your openness about Pip’s situation and I’m so sorry that people feel entitled to be so insensitive to you. It can’t be easy to be away from your little girl but I so love how obviously crazy you are about her and what a special connection the two of you have. She is adorable.
Thanks for clearing that all up. I had wondered but was too afraid to ask. I don’t know you but I would NEVER want to offend you. I think you are amazing. So is Jake. And most of all, so is Piper.
Her name so suits the awesome, spirited personality you describe! Thanks for sharing her with us!
When Pip is ready to go home, I want fly to NY from CA to party and meet her!! She is amazing!!
I am one of those that asked, not because I was trying to be rude or thought she wasn’t in there for a good reason. I was just honestly curious. I could not fathom the idea that your child would have to live in the hospital permanently (for now, at least). Reagan, I appreciate your honesty and willingness to share your family with all of us. I love your humor, and your writing style. When I come visit your page and read the latest updates I feel like I’ve come to a friend’s house and am sitting down on the couch with her just chatting it up. Thanks for that. It makes a stay at home mother like me, feel like I’ve gotten out of the house for a minute. Hopefully, I haven’t said too much. Just wanted people to know that by asking the question we’re not trying to be rude, we’re trying to get to know our friend a little better.
Reagan, you and Jake are great parents. It’s clear that Pip is happy, well loved and very well taken care of, and that’s all that matters. Keep up the great blogging, and don’t let the insensitive, shortsighted people of this world get in your way (or into your head).
Great post. Thank you for explaining.
BTW — you have a great writing style. If I was a literary agent I would scoop you up in a heartbeat. Would love to read a book about your journey into Mom-hood.
I hope no one actually thinks that you wouldn’t bring her home if you could.
I am glad to learn more about Piper. You write so well and describe her really well I feel like I have met her.
You guys are great. Simply great. Thank you for your post.
Hi Reagan,
This is the first time I am leaving a comment. I came to know of your blob via CJane a while ago. Big mistake …. I spend far too long every day being captivated by your little daughter Piper!! You’re great too and you sure have a knack of explaining complicated medical terms in a way we can all understand. I agree …. just looking at pictures of Piper one gets the feeling that she marches to her own drum. Go Pip go! Thanks for sharing her with us!
Thanks for letting us know a little bit more about your Pip! I did ask a question (for the record, I did not ask why you don’t have her at home…I assumed that it was because you couldn’t). Anyways, just to clarify I was not trying to be rude or nosey…just wanted to know more about your wonderful Pip. You are a great writer (very funny!) and I love seeing your pictures of Piper. Thanks for sharing your sweet girl with us!
I went back in your archives one night and read many of the posts which is where I learned that she was not able to come home. Looking at your love for this little girl I knew there was no way you would leave her in a hospital if she could be home with you and your hubby!
Looking forward to hearing more answers to the questions
I love this. I love her. I love you guys. I love that you want her home, and I love that you are trusting and love her enough to trust the doctors when they say it’s not possible.
She’s so lucky to have awesome parents, and you guys are so lucky to have an awesome Piper Jane!
You guys rock, keep your chins up and love that little lady with all your hearts (which duh, I know you do anyways). Have a wonderful day.
I too was linked to your blog from cjane. I have enjoyed reading your stories about you and your adorable little Pip. Regan,I really admire you. You make every post positive and uplifting, you’re witty and funny and are an amazing mother. I don’t keep up on too many blogs of people I don’t know, because…well I don’t them and don’t want to be the creepy stalker, ha ha ha, but I have enjoyed reading yours becuase you are an inspiration and an example to all mothers. Listening to how you cherish every moment with your daughter makes me also want to cherish moments with my children. You make the best out of every situation and to me that is one of the hardest things to do, for anyone going through anything that is hard. It’s almost natural I think to want to give up and sulk, and you have to be super strong to decide to keep on moving forward. Any way, it’s refreshing to read someone who is “real” and takes things head on with a smile. Any way, I hope these compliments brightened up your day as your blog does mine.
-Valerie
P.S. you’re outfits are always rockin’ too!
Thanks for helping me understand the trials and tribulations better. Because CCMS is so rare, it was difficult to understand what the little Pipster is up against. That she’s a feisty firecracker, and keeps the doctors guessing makes her that much more special to me.
I’m glad she’s made it to the new ventilator so she is able to get around a little more, find her monkey card, pull on your earrings, and sleep in Jake’s lap.
You’re a beautiful family.
Thank you for sharing.
i just want to ask. when/if pip comes home, what should i send: brownies or a mozzarella stick fried sandwich?
Reagan, you are one amazing chica!!! Keep rockin’ the world girlie
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Well Said and Clarified. Thank you.. Way to Go Pip!! Can’t wait to hear and see what she is up too. Jamie
I love reading your blog and admire your openness. I think that you and little Pip are fabulous!!
This post made me laugh, weird I know. But Same thing with Davy, I felt like everybody wanted answers that I could never give. I do love all the details you gave though(with her vent/s).
Seriously? You are killing me you are so cute. Are there people out there as great as you and your fam? Just to let you know I think you are as unique as the Pipster. Amazing!!! Once again, stalking would be easier if the Pip were at home and I could just follow all 3 of you around!!! This is my daily prayer!
You are OK, Ms. Reagan. You’re doing a great job! Kid and blob!
Dear Reagan,
Thanks be to CJane, queen of blogs, for introducing me to you (the queen of bloBs) and your rockin’ little pipster! Is it ok if I’m completely in love with your pippy pip squeak? I mean, how could I not be? She is awesome and ridiculously cute!
I am so inspired by your incredible optimism and humor through such a tough situation. You make me LOL… For real… TOTALLY NOT lying. So, take that! =D You are a blessing to your little PJ and to all of your readers!
Thanks for sharing your adventures in motherhood and for helping ME to be a better mom. Lots of love and prayers for you, Jake and Piper Jane. <3
I think you have a new group of fans. You can call us Pipple. : )
thanks for taking the trouble to explain–i’m an early intervention physical therapist and i never know when a little one like piper will come my way! there is a little guy here (he’s seen by another PT) who was born missing a good deal of ribs and he has gotten titanium ribs! crazy eh? they have to be grown/replaced as he grows, but he’s got them. i wonder if that would that ever be an option for piper.