C’mon Getty, find the strength to cough that stuff up and out. We’re all behind you.
I hope and pray that Little Getty gets better and can get a good night’s sleep.
Thank you all for pulling for little Getty.
Here’s another update.
Holy cow. That RT sounds like an idiot. What amazing advocates and parents you guys are.
Ditto! The only question is: in the 2.5 hours she’s not being treated, which one of you stays with her while the other one finds a place to hide the RTs body?
RT needs a beatdown for sure. Glad you are rid of that guy… Glad she pulled through that, & hope she keeps getting better. Thanks for the update, BTW.
When Wee Pundit was in the hospital with febrile seizures, they had to put in an IV. Unfortunately, she was dehydrated from the fever and her veins were tiny to begin with, so it wasn’t easy. A nurse, who I’ll call SB (for Stupid Bitch), attempted to stick her but failed. To make matters worse, she completely blew out the vein, meaning it wouldn’t be available to be used again until it healed. Not good when you only have a handful of good sites to begin with. So she moved to another spot on the same arm. No go. Blew out another vein! Meanwhile, my daughter was hysterical and I was trying to soothe her and not cry myself.
Well, she tried a third time on the second to last good vein, and this time, in her zeal to do the job, moved the needle back and forth under the skin to search. My daughter was writhing in pain and crying so hard she couldn’t catch her breath. It was horrendous.
Another nurse gently suggested that SB call the ER team in, who apparently is very adept at getting IVs in, and the nurse refused. She declared, “No, I’m going to get this.”
My husband walked over to my daughter, placed his hand over the spot on my daughter’s arm where the nurse was poised to stick her again, looked her straight in the eye, and said very quietly, “You’re done here.”
I have never seen him so livid, or menacing, in my whole life. Hope to never see it again. Guess what? They called the ER team up and they got the IV in on the first stick!
But I learned an important lesson that day. You have to be an advocate for your child. Instead of speaking up, I sat there and let that incompetent nurse torture my child. There is an ART to running an IV, and not everyone can master it. I knew that; why didn’t I speak up? There’s undoubtedly an art to administering an RT, and the Bearflags have mastered it out of necessity. Shame on the RT for not trusting them. When everyone acts like a team with a common goal, it’s better for everyone.
I am told by those who should know to rely on folks with both baby and ER experience to find a vein. When three EMTs couldn’t find a vein on me, they hauled me into the local children’s hospital ER and presto, I was receiving fluids. I was 35 y.o. at the time and sick with food poisoning.
Quoted for truth!!!
I have crappy veins. Blood draws come from one specific vein on one arm - it’s the only one everyone can get easily. Starting IVs requires multiple attempts and usually a second person.
When I had my colonoscopy last year, THAT was the part I was dreading more than anything else.
The nurse got it in one try, almost painlessly. I complimented her. She said “I learned in the NICU”.
Good move Bearflag. You must protect Getty from the idiots. Unfortunately, there are a lot of idiots.
i’m glad to read things are getting better. y’all are often in my thoughts.
i hope everyone gets good, healing sleep with therapys spaced a bit more. poor wee owl is really working hard on her breathing, you can see it in her face.
having cuddle time is really important, and i’m sure getty was feeling much happier and more comfortable.
Thank you for your support! Likely discharge form hospital tomorrow.
So happy. 
I’ve been following your blog very closely during your hospital stay. What an ordeal. I’m thrilled she’s being discharged. Wish I could give her a hug and kiss.
It’s likely our last night in the hospital tonight. Time for celebration … but for the fact the nurses are new to our case tonight and have already made some mistakes.
The main one is they forgot to open her feeding tube, so all the food from the food pump was just backing up into her ventilation bag, and she could have fasted for four to eight hours had my wife not caught the mistake. SMA kids are not supposed to fast for more than 4 hours because they have so little fuel reserves in their muscles.
Then this new nurse (new to Getty) handed off to another new nurse and we got to talking about protocols. He kept saying things like, “OK we will be sure to suction Getty’s mouth before we move her.” What he should have been saying is, “We won’t move her at all, and we will wake you up when the time comes to reposition her so you can move her.”
On top of this, we know there will be a new nurse and a new respiratory therapist coming on in the middle of the night. We have no ide what information will be or won’t be passed on to the new nurse and RT.
Bottom line … recipe for disaster. We don’t trust them. They give off bad vibes like the guy who desatted Getty a few days ago.
Kate and I will be taking shifts on the night watch. I’ll be up until about 3 or 4 am just to keep an eye on these people. Then Kate will take the next shift. It sucks that we feel the need to do this, but one wrong move by some bonehead, and we lose our daughter.
So glad that Getty has improved enough to go home! And wishing virtual wedgies upon those so-called professionals who won’t bloody listen when her parents try to help them do their jobs properly!
And virtual hugs to you, and Kate, and Getty as you share your lives with a bunch of internet strangers who wish you all good things.
I don’t understand what the hell is wrong with them. It’s like they don’t even know the very basics of SMA care and are intent on forcing their inexperience on Getty. You can bet they’re talking about Getty’s “overbearing parents” and conveniently forgetting that they almost killed her.
I think you’re absolutely doing the right thing by having one of you with her all all times till you go home. I wouldn’t leave her alone with them for a second.
It’s like you’re getting both ends of the spectrum there, the best nurses and the worst. What they fail to realize is that you and your wife have immersed yourselves in everything to do with SMA for the last year and your knowledge of it, and in particular, Getty, far exceeds theirs, and I think that’s hard for them to admit.
Good luck and get that baby home.
The nurses and RTs who see Getty for the first time or for only 1 shift probably have little idea what we are all about and think we are overbearing nut cases. Those who see her a second and third shift start to “get it.” The nurses and RTs who have seen Getty for 4 or more shifts are our biggest friends and supporters. We love them and they tell us how much they care for her and they would do exactly what we are doing.
The new nurse last night came on his first shift with Getty and I could see his head spinning when, at 1 a.m., I asked him for 2 cups of coffee. I didn’t tell him I don’t trust him not to accidentally kill Getty and I intend to watch him like a hawk. I just said politely, “I have a sudden craving.” 
i’m glad you are going home soon. all of you will be more comfortable there.
it must be a lot easier to deal with red tape and those who are unfamiliar with sma when you know the end of the stay is in sight.
Home!
Hooray!