Kai could hardly stay awake when I bathed and changed her after her vomiting episodes. She couldn’t keep her meds down. Her skin was mottled, worse than yesterday, and her temp was low… So back to the ER we went. We are going in this time. Her PICC isn’t working, x-ray showed that it is pulled out of place a bit. I’m trying not to fall asleep on the floor, she’s looking a little bit better than when we came in. She giggled when I have her butterfly kisses, that’s a good sign. She was hardly responsive at all earlier, even when she had her IV placed. 

#atrt #22q13 #gogold #fightforacure #kaicanmovemountains  (at Seattle Children’s Hospital - Emergency Room)

Kai could hardly stay awake when I bathed and changed her after her vomiting episodes. She couldn’t keep her meds down. Her skin was mottled, worse than yesterday, and her temp was low… So back to the ER we went. We are going in this time. Her PICC isn’t working, x-ray showed that it is pulled out of place a bit. I’m trying not to fall asleep on the floor, she’s looking a little bit better than when we came in. She giggled when I have her butterfly kisses, that’s a good sign. She was hardly responsive at all earlier, even when she had her IV placed.

#atrt #22q13 #gogold #fightforacure #kaicanmovemountains (at Seattle Children’s Hospital - Emergency Room)

I thought all night of ways that we can set Kai up to be long terms successful & stable at home- What I have been working towards for months & months. There’s no way her doctors can think that Kai will be able to go to school with her having uncontrollable vomiting and pain, & not sleeping. There’s no way for Kai to be successful if I’m too drained and can’t care after her properly. Setting me up for success is setting Kai up for success. These are issues I’ve been bringing up to her medical team for months. And they still have no answers or no plans as what to do, which I can try to be understanding about, but a plan to get answers and resolution would be appropriate. Weeks ago, her nurse practioner said she would get Kai on the roll with outpatient endocrine, GI, genetics, therapy. And the still have no schedule put together, which the scheduler even found to be odd. I need the referrals for the appointments put in, because when I call to get appointments, they tell me they are booked up to 9months. We have already been doing this tango for that long… They won’t set those appointments up while she is inpatient, even though Kai is inpatient more than she is outpatient. How long are they going to lead us in circles? Should I just go on strike at the hospital until they put some appointments together to start working on how to manage Kai’s symptoms…? Kai’s next appointment is October 2nd. Over the past several months, the interactions between her doctors and I have become more and more tense, because I keep pushing for resolution for Kai. There’s only so many ways I can say we need to figure out why Kai can’t eat, is in pain, and won’t sleep so much that it’s causing her to have to go in through the ER several times a week. I’m wondering yet again if transferring is the best idea… Back to that point of the circle we keep spinning on. 

#kaicanmovemountains #figttforacure #gogold #atrt #22q13 #latergram

I thought all night of ways that we can set Kai up to be long terms successful & stable at home- What I have been working towards for months & months. There’s no way her doctors can think that Kai will be able to go to school with her having uncontrollable vomiting and pain, & not sleeping. There’s no way for Kai to be successful if I’m too drained and can’t care after her properly. Setting me up for success is setting Kai up for success. These are issues I’ve been bringing up to her medical team for months. And they still have no answers or no plans as what to do, which I can try to be understanding about, but a plan to get answers and resolution would be appropriate. Weeks ago, her nurse practioner said she would get Kai on the roll with outpatient endocrine, GI, genetics, therapy. And the still have no schedule put together, which the scheduler even found to be odd. I need the referrals for the appointments put in, because when I call to get appointments, they tell me they are booked up to 9months. We have already been doing this tango for that long… They won’t set those appointments up while she is inpatient, even though Kai is inpatient more than she is outpatient. How long are they going to lead us in circles? Should I just go on strike at the hospital until they put some appointments together to start working on how to manage Kai’s symptoms…? Kai’s next appointment is October 2nd. Over the past several months, the interactions between her doctors and I have become more and more tense, because I keep pushing for resolution for Kai. There’s only so many ways I can say we need to figure out why Kai can’t eat, is in pain, and won’t sleep so much that it’s causing her to have to go in through the ER several times a week. I’m wondering yet again if transferring is the best idea… Back to that point of the circle we keep spinning on.

#kaicanmovemountains #figttforacure #gogold #atrt #22q13 #latergram

We got to leave the ER after 3am. Kai screamed hysterically the rest of the night and morning so far. She has cried in her sleep, for the few times she slept for 20minutes or so. She’s vomited up more than she has taken in. She panics every time she vomits & has fought me trying to keep her on her side during her episodes, so she has choked on her vomit several times this morning and now has a gargling sound like she may have aspirated. I realized this morning that I honestly don’t know when I slept last, usually I have some sort of idea… But my eyes have been so dry that they hurt, and I feel sick to my stomach… That’s a bit of an indicator of my loss of sleep…

#latergram #kaicanmovemountains #atrt #22q13

We got to leave the ER after 3am. Kai screamed hysterically the rest of the night and morning so far. She has cried in her sleep, for the few times she slept for 20minutes or so. She’s vomited up more than she has taken in. She panics every time she vomits & has fought me trying to keep her on her side during her episodes, so she has choked on her vomit several times this morning and now has a gargling sound like she may have aspirated. I realized this morning that I honestly don’t know when I slept last, usually I have some sort of idea… But my eyes have been so dry that they hurt, and I feel sick to my stomach… That’s a bit of an indicator of my loss of sleep…

#latergram #kaicanmovemountains #atrt #22q13

Three things I foolishly and hopefully believe over & over: 1) Every time we leave the hospital, I imagine us moving forward and not spending so much time in the hospital; 2) There will be time where eating dinner after 2am isn’t my norm; 3) I will sleep a few hours straight tonight. 


#mamateal

Three things I foolishly and hopefully believe over & over: 1) Every time we leave the hospital, I imagine us moving forward and not spending so much time in the hospital; 2) There will be time where eating dinner after 2am isn’t my norm; 3) I will sleep a few hours straight tonight.


#mamateal

I remember dreaming up Kai’s nursery. 
She has spent most of her life in a hospital room. 
I remember dreaming up her childhood as peaceful and encompassed with love. Her life has been a constant beautiful struggle, from us escaping her abusive father to diagnosis followed by diagnosis. She has exceedingly overcame everything thrown her way. 
I remember dreaming of her saying, “I love you, mama.” Kai likely will never be able to verbalize words. 
I use to feel somewhat robbed of motherhood by this thief, cancer. 
I mostly felt heart ache for Kai cancer stole so much from her. 

But now I see that I’m still a mother to a remarkable little lady, and Kai is still a little girl dreaming up big dreams. 

http://enoughwiththesmalltalk.wordpress.com/2014/05/14/cancer-is-a-thief/

Working on publishing those drafts from my blog…

#enoughwiththesmalltalk #mamateal @tealherself #childhoodcancer #advocate #gogold #lifeontheeinside

I remember dreaming up Kai’s nursery.
She has spent most of her life in a hospital room.
I remember dreaming up her childhood as peaceful and encompassed with love. Her life has been a constant beautiful struggle, from us escaping her abusive father to diagnosis followed by diagnosis. She has exceedingly overcame everything thrown her way.
I remember dreaming of her saying, “I love you, mama.” Kai likely will never be able to verbalize words.
I use to feel somewhat robbed of motherhood by this thief, cancer.
I mostly felt heart ache for Kai cancer stole so much from her.

But now I see that I’m still a mother to a remarkable little lady, and Kai is still a little girl dreaming up big dreams.

http://enoughwiththesmalltalk.wordpress.com/2014/05/14/cancer-is-a-thief/

Working on publishing those drafts from my blog…

#enoughwiththesmalltalk #mamateal @tealherself #childhoodcancer #advocate #gogold #lifeontheeinside