Saturday, March 31, 2012

Where We Are At Now

1.5 oz Thursday AM followed by 1 oz PM
Friday .75 oz. peanut butter late evening 5oz. (given by Mimi in 1 sitting)
Sat AM 2TBSP peanut butter/ applesauce followed by 4oz. (given by Mimi, who is now nicknamed the baby whisperer and is currently in charge of all bottle feeding until further notice!!) (Mommy just sings and moves Cianna's arms or does motions to songs to keep her happy :) 0.5 oz, nap @ 10:45am and onto another trial now, I hear success. We are in the library area, Mimi and C. are in a rocker...
So now we are back to letting go and waiting to see if we are witnessing a miracle occurring.
(There are some parts left out of this post, keeping positive thoughts)
So pray pray pray!
Love, Lin, Mimi, and Cianna

Wednesday, March 28, 2012

What's Next?

So I've been busy over the past few days. I want to thank God for blessing me with a sister that doesn't always see things in life right, my way :) , however when it counts is totally self sacrificing, empathetic and loves on me! Thanks Meri for updating everyone.
So as I see it and feel it. (I'll forever trust my maternal instincts from here on out. Prior to kids my instincts were typically always... the opposite of the matter at hand. So I've been leary these past 5 yrs. of trusting those "maternal instincts".)
Tomorrow we will attempt LOTS of offerings of a bottle, she is kind of eating like a newborn in her frequency desire and quantity from today's observation. I have even heard her making sucking sounds in her sleep a few times tonight! Tomorrows eve. meds will be offered by me orally with an RN present, if the Dr.s agree. The overnight nurse liked the idea. I'm not thinking Cianna will be really eating solids well right away, however I think if I can get her up to 24-30oz of fluid a day and taking meds. orally well, then we should be heading out of town Mon. I hope. That's all unofficial, but sounds reasonable in my head at least. :) Night to all and thank you sooo much for everybody's prayers. (thank your friends and church folks as well please from me.)

Tuesday, March 27, 2012

She drank from a bottle!

1:05 pm - From: Lin's Cell - "Cianna drank 1 oz. from a bottle.  THIS IS A HUGE STEP.  I couldn't sing anymore because I was bawling and thanking God!!"

9:07 pm - Lin may update this (since I said I was too tired to do so), but I wanted to get out there that Cianna drank almost 5 oz of stuff (Carnation Instant Breakfast and/or Ensure) today!  


Monday, March 26, 2012

Music - it's good for what ails ya!

In middle and high school, I played the flute.

It didn't bother my parents much, because I hardly ever practiced.

My SISTER...played the drums.

Paybacks are....heck.

Play that funky music, white girl.


10:06 PM - I'm late updating the blog, but since Mimi and Lin haven't had the time, I figured better late than never.

Lin did some research last night and this morning about NG tubes and feeding aversion.  The hospital is ready to put a gastronomy tube (g-tube) in, but they were willing to remove the NG tube and wait a couple of days to see if Cianna will show any interest in eating without having that thing up her nose and down her throat.  She's actually managed to GAIN some weight, in spite of the small feeds (3 oz.) and all the craziness around her.

Cianna DOES seem to be swallowing, so we are hopeful that she's just been full and not "forgotten" how to eat or regressed to her former eating aversion.  (<-- If anyone wants to correct me on that, please do!)

Sunday, March 25, 2012

MicroSteps Forward

Not much to report.  Or, it doesn't seem like much, when you look at where you want to be.

Christianna is still not eating.

BUT, she is swallowing her drool.  It seems like such a tiny thing, but on this road, it's kind of a big deal...

Thursday, March 22, 2012


Something I LOVE to do, ask anyone who knows me, is not something Cianna is into AT ALL these days. Trying not to cry as some sweet gal tries to work with your little child on your lap, who wants nothing to do with food is not easy. Pray God gives her back that desire/ability faster than is natural, so we can get home!!! Thanks.

Wednesday, March 21, 2012

Panini, Chips and a PB cookie

Well late last night we ate dinner and Cianna perked up when Mom and I sat down to eat. She showed interest in all the food. So much that she physically took all three items to her mouth more than once. Then nothing. SOO I think her brain has forgotten what to do next. And I can't open her mouth for her and put food in as that just... irks her. My therapy team today told me to make SURE we get a swallow study done before we leave as she could be aspirating. Some folks do it quietly and the officials think they are fine. We will be sure to get this done. I hope I am wrong about the memory of how to open her mouth or use her mouth to eat, but that's my gut feeling at this point. We shall see today is a new day.

Tuesday, March 20, 2012

Sleepy Baby

Mimi emailed: C so tired. They've put a note on the door to not come in as she needs to sleep. The head neurologist has ordered melatonin for her tonight. She has no interest in food or drink. They need her eating to discharge her.

Sunny here in Syrucuse today. :)

Monday, March 19, 2012

Everyone Wants To Help Her

Today I've had this overall feeling of how joyful it would be to be at a shooting range, or maybe a screaming contest.  Just angry.  Cianna's feeding is stopped at 10am.  She's not hungry of course so she goes to sleep around noon. we step out and talk local restaurants and emergency meds w/ the DR.s  As we are about to go eat I pop in and she's sitting up in the crib.  So the nurse says, "Goooo eat!" When we come back around 1:30 they are finishing hooking her up to the EEG.  We've seen twitching yesterday and more today.  They could just be from the meds, or coming back as the meds wear off.  She could go home with twitches. We have to find a point where the meds control active seizures, not incl. inactive ones which the meds don't touch, and her not being groggy/drunk looking/ acting.

Yippie! This is a fun road trip let me tell you!

So after that EEG cleanup, remember no nap yet, we get to work on feeding w/ an audience. Everyone means well, and we appreciate everyone, however you also want to impolitely shove everyone out of the room. MY BABY'S PEEVED AND TIRED AND WILL PROBABLY NEVER EAT IN THIS HOSPITAL BY CHOICE!!! A Dr. finally says, "I think she's to agitated to even eat if she's hungry let's see after she gets the nap." :) yay Dr.!! So Mimi and I sit on our couch, turn on the classical tv station and read and compute. Watching her lie there watching us. Dozing, then waking up. She's back to having anxiety issues, and now trust issues as well!! Yay!! Mom says when I had my eye surgery at 13mos. that after that I refused to lie down for a diaper change and to expect some trust issues w/ Cianna for the next few months. Right now I think I'd even prefer sitting on the paddle in the hallway to this. (Edited to add: Lin used to get in trouble in Kindergarten for talking, or getting up out of her seat a lot. The school wouldn't paddle kids that young, just have them sit on the paddle...)

She has to have braces on her arms while she sleeps so she doesn't pull out the NG tube. Those are annoying as well. STOP COMING IN HERE!!!!!! THAT DOESN'T HELP. She's awake again.

Sunday, March 18, 2012

Mimi texted: "Just moved C out of ICU to floor (regular) room - a step closer to going home"!

Saturday, March 17, 2012

My head is heavy!

I got to Skype with Cianna and Lin. (Sometimes, technology rocks!)

Cianna is sitting up some (and falling over some).  She holds her head up, and then at other times she sits with her chin almost touching her chest, like it's so heavy!  She's not making many sounds, but that could be due to the feeding tube.  She kept pulling off the oxygen monitor, so now it's attached and she has a sock on that foot.

They're still giving her B6 twice a day and she's still getting Keppra and Phenobarbital, although they're not giving her such a big dose...

Christianna is having a better day.

Mimi writes:  They took out the feeding tube, but if she doesn't start drinking from the bottle soon, they will reinsert so she doesn't become dehydrated. Or they might give her fluids through an IV. However, we think she has a sore throat from the breathing tube they had down her throat and can understand her not wanting to drink from a bottle. She mostly acts like she feels crummy and Lin says her eyes look like a drunken sailor.

At the moment she is standing up in Lin's lap. She has shown an interest in playing with several of her favorite toys which Lin brought along from home.

We will still be here for several more days...
4:44 pm - the feeding tube is being reinserted.

Friday, March 16, 2012

The Excitment of Yesterday!

Mimi's been feeling yucky, to put it politely, and got checked in yesterday at the ER and spent the night up on the internal medicine floor. She is waiting for tests. It's hard to test stuff that gets lost in transit as hers did... her second sample at that. Currently someone has pulled the fire alarm. I checked and we are waiting on the run or stay announcement. So Mimi predicts to be in her end of the hospital all weekend. I'm drinking my juice like mad and taking my new elements every day. Getting lots of sleep at night, and water too.

Christianna somehow removed her IV last night around 6:30pm. The RN couldn't save the line, so she and another RN had to poke Cianna 4-5 times in other areas trying to restart another IV as this is how the Keppra has been given. Finally the resident said they could give the drug through the NG tube.

I held her again last night and she seemed to want to be lying on her belly w/ her limbs tucked under her, so after 30 min. I had a nurse help to put her back into her crib. She's on the full load of pediasure through her NG tube today - 42ml per hour. Later on in the eve. last night they did do up another IV - in her hand this time. It was for emergency purposes in case she started to seize again. I was told we did not hear from the Neuro last night about the EEG, however if he had wanted a change in meds he would have called. So that's good, I suppose. I saw her eyes more last night - usually only one at a time and no real focus on me or my moving hand. Waiting until tonight to do labs to see where her phenobarb. levels are at. They've been going down every day. Her face isn't puffy looking from the IV. It no longer looks baby fat chunky, which she only just acquired about two months ago. We got from 18.5 up to 24.1 in around 6 months. Wonder what she'll weigh when we leave??? On a side note, Mimi's bed weighs the patient while they lie on it. How cool!!!

Thursday, March 15, 2012

So there are these little ticks???

She opens one eye a little more today. The other is usually pressed into the mattress as she is on her belly w/ her feet tucked under her. She seems to have these twitches/ticks. They look like a person sleeping that gets twitches. But are hers more rhythmic? So the resident Neuro on is ordering another EEG monitor. I guess that means another head wrap that looks like a brain surgery wrap. Last night I sent Mom to get dinner w/out me. Safe right?

Wednesday, March 14, 2012

I want to BE ON MY BELLY!!!

Sooo yup it's time to move you into a crib baby girl as you want to be sleeping on your belly. It's freaky when she moves on her belly w/ wires and iv's. The one alarm amongst many monitors beeped and oxygen was measured at 57 for a moment. So as the new nurse on was not in site (their constant vigil has lessened) I go to the desk and say I'm sorry to be a paranoid mother however... and she inspected and levels were back up to 79 and 96. Better safe than sorry. Do I go home and become an anxious mother. Every lengthy twitch... thank god I won't have monitors and wires back home.
I saw about a 2 milometer crack of her one eye open, then again an even smaller slit last time she was awake!!! Catheter is out. Groin iv not in use. Out tomorrow or next day...
Life is precious, and there is a last breath, so enjoy each one given to the folks you love.
Thanks for praying and caring enough to read.

People Are Soo Amazing!

The tube is out and has been for about 2.5 hrs. She stayed awake for about 1.5 hrs after that. Whimpering and moving her legs all over and up in the air, wiggling her booty up, sliding down on the bed. The wonderful RN kept repositioning her up higher on the bed to be more comfortable only to see her scoot back down and move her up again. She has a mask on today to keep oxygen going to her nose and mouth via CPAP setting on the ventilator. She had two breathing treatments. Her throat and such are swollen so these were to help take the swelling down. Finally right when visitors came she dozed off to sleep. The visitors were the paramedic and his wife a nurse from Samaritan hospital (the first hospital she was taken to)! Isn't that amazing! These strangers cared and came to visit. He said he'd been thinking about her since that night because in 16 yrs as a paramedic, around 55,000 runs, that was the longest time he'd seen someone in a constant state of seizure. Usually a patient seizes then they are given meds so they stop. Then they might start seizing again after awhile, but never constantly seen before her.
He is also in the reserves and they have five of their own kids, and it is his wifes birthday today. Very busy people, yet they stopped in to see Christianna. People are awesome! Stop watching the news to hear about all of the small circle of idiots and psychos and see the beautifulness that us humans are. (Well at least that's my humble advice)
2:30 pm Still waiting for a doctor to authorize removing the catheter. She's still getting oxygen through a mask which she's not been alert enough to try to pull out....yet. She's been like crying....whimpering and coughing. They said there is partial lung collapse from lack of deep breathing and a slight fever which is common when a lung collapses.

We Got Booted Out!

Yup. so they could remove the breathing tube!!! Currently!!! Small Prayer said now! OK so they tested her on he CPAP setting of oxygen, which means it's all her breaths, she did great. So we are waiting for a nurse to come get us and tell us it is done. ... ... ... what to type i'm waiting...
Breathing tube is out!

Just talked to Lin

I just talked to Lin - Cianna was sedated again last night to help her sleep.  The sedation was stopped this morning at 6:30 am, and she's slowly (slowly!) coming around.  Lin says she'll try to update this blog sometime today!

Tuesday, March 13, 2012

Posting A Comment

So you have to get a blog account to post comments on here. Yes it annoyed me, too - the first time i ever tried to post a comment onto someone's account.  However... you are very welcome to call us as we really miss and need to hear your voices of support, so just comment on the cell phone to us.

More Bad Humor Than An Update!

She looks good says the serious doctor on the rounds tonight. (Temperament task oriented. He doesn't seem to appreciate my humor. Good practice for me on working on not interrupting.)
Tube not coming out until tomorrow or next day. Don't want to take it out to early, and then have another poss. lung collapse???  I did not realize we had already had one. I asked. He explained this to Mom and I about 5 minutes ago. However, neither she nor I can reiterate what he said. (Go sanguines) You see I walked back down the hall from getting to make a concoction of my newly arrived MV element for the brain. I'm all excited to try this and there's 6 ppl standing in her room and the hall. So after the update, my brain went back to one of it's favorite subjects as the Gibson's, Knowles and my family are well aware of: FOOD!! My first thought after the doctors left the room was, "So let's get online right here on mom's computer and check the balance on this Tim Horton's gift card we've been given!!!" Thus you get the bit I remember! Tube stay in. See you tomorrow.
I remembered more:
I keep forgetting to tell. I confirmed with the RN on now that the seizures are classified as Status Epilepticus

So the Pacers Suck

says the man at the parking office. I told him, "I don't really pay attention to sports, I don't watch baseball." Yup he fell for it too.
Looking really likely to be removing breathing tube today. It's at lowest oxygen setting, and 10 breaths per minute so we watch her # and see she's doing more work on her own. I've told them when she wakes up, she is usually very impatient and wants her bottle instantly. The next step with breathing is to be on the CPAP setting on the ventilation system. What this is is still having the tube in for safety. However, the machine no longer does any breaths for her. and the RN's monitor her standing in the room. if she breathes on her own for 15 min. then the tube comes out. If not then they go back up to the breathing for her settings and will try again tomorrow.
I rubbed and held her hand as it was moving this morning around 9:30am and called her name to her and she was blinking w/ her eyes closed. When I was on the phone with Daddy I held the phone up to her ear and she closed eye blinked again a few times and got all squirmy.
Scout (her singing puppy, way cool gift from Grammy) sang some favorite songs to her a few times as well..
went to Mass yesterday and the priest will be by today to bless her. He came by yesterday, but we were talking with the Child Life Specialist.
Christianna keeps trying to lift her butt off of the bed when she is awake.
We will probably transfer out to the floor, after she's off all of the tubes, and this is where they will observe her on the meds that we will give her at home from now until...

Bath time!

So, I'll update this with what I know, but I haven't spoken to Lin since yesterday:

The EEG monitor came off yesterday, so Christianna got a bath and had her hair shampooed.  Mimi and Lin spent the night at the hospital again, and are checking out the option of staying at the Ronald McDonald house tonight.

Lin left this in a comment to a previous post, so I'm reposting it here in case anyone missed it:  "Well the breathing tube won't be out for at least 2 days... that is where they will start feeding her (through it) yum!

Probably yes, looking into Ronald McDonald House as well. $20 a night, won't have to keep making our beds every day and stripping them daily, free parking 1/2 mile 5-10 min. walk depending on our pace. We can keep our things there. Has a pantry full of food. some nights local restaurants donate dinner for the house."

Monday, March 12, 2012

Cradle Song

Cradle Song

Sweet dreams form a shade,
O'er my lovely infants head.
Sweet dreams of pleasant streams,
By happy silent moony beams

Sweet sleep with soft down.
Weave thy brows an infant crown.
Sweet sleep Angel mild,
Hover o'er my happy child.

Sweet smiles in the night,
Hover over my delight.
Sweet smiles Mothers smiles,
All the livelong night beguiles.

Sweet moans, dovelike sighs,
Chase not slumber from thy eyes,
Sweet moans, sweeter smiles,
All the dovelike moans beguiles.

Sleep sleep happy child,
All creation slept and smil'd.
Sleep sleep, happy sleep.
While o'er thee thy mother weep

Sweet babe in thy face,
Holy image I can trace.
Sweet babe once like thee.
Thy maker lay and wept for me

Wept for me for thee for all,
When he was an infant small.
Thou his image ever see.
Heavenly face that smiles on thee,

Smiles on thee on me on all,
Who became an infant small,
Infant smiles are His own smiles,
Heaven & earth to peace beguiles.

William Blake

So, how cool

The Neurologist Dr. Yaman Eksioglu, MD, PhD can view her EEG from home!!!
Last night around 9-11pm she stopped having seizures. probably taking EEG off 24hr monitor after lunch. he said her EEG looks remarkable now. She moves her arms and legs a bit, though still asleep most of the time due to lots of meds in her system. Her eyes may open today or tomorrow. Soon she'll be impatient w/ me again for her bottle.!!!

Sunday, March 11, 2012

Curious... About God's Plan

So she also has a tube now for urine. :( We met w/ a nice Episcopalian minister, Renee today. I don't remember what all exchanges we had, but it was an awesome feeling. Looking forward to the "prayer circle" I believe it is called. It is a circle of around 200 people in the city praying for the children on this list that I can go add her to. Random people. praying for her - how neat.
Yup this was not my plan. However it was nice to only have to be bawling while I repack into the smaller bag last night rather than have to go home and figure out what to pack.... We were already packed, had reading material and snacks. We were brought to SUNY State Univ. of NY Upstate Medical University which my Indiana friend informed me that she knows a child brought here to Syracuse after not getting answers at Riley. Apparently Syracuse hospital is known for genetics, epilepsy... Curious to see what a second, third, etc. set of eyes see.

An Unexpected Turn

Some of you may have already heard that Christianna's adventure took an unexpected turn.  

On Saturday, the girls made checked in to a hotel in Watertown, NY.   That night, a little after midnight, Lin noticed that Cianna's lip was tremoring (and I believe her eyebrows) and she seemed to be coughing.  Something didn't seem right.  They called an ambulance and Lin rode in it to the hospital.  Mimi got dressed and then followed in the car.

Cianna's heart got up to 170 bpm and she was on oxygen.  Lin said she never really came out of the seizure.  She didn't have a full-body seizure, but didn't stop "tremoring" until she was given Phenobarbital.  She was transferred to Upstate Golisano Children's Hospital located an hour south in Syracuse around 5:30 am.  Mimi and Lin headed back to the hotel to pack up, check out and make the drive down.

At some point, a CT scan was done, and came back negative.  A chest scan showed fluid in her left lung.  This was first thought to have been from Cianna aspirating last night when she vomited.  The "gunk" has since been removed and appears to have been there for awhile, as it was discolored.  Now the thinking is she may have been having these "episodes" for awhile.

Christianna was put on a Penicillin drip about 10:30 this morning, and is running a low-grade fever (99-degrees).

She's been intubated for oxygen and to prevent further aspirations.

Unfortunately, when the Phenobarbital started wearing off,  Cianna starting seizing again, so another drip of that was started, along with Keppra (Levetiracetam) another anti-seizure medication. 

Thankfully, the Children's Hospital has a rooms for families - Mimi and Lin got one and were going to try to get some sleep.

That's all we know for now! 
Talked to Lin tonight about 8:30 pm.  The rotating of the meds (Phenobarbital and Keppra) seems to be working, so the levels are going to be kept where they are.  Dopamine is being added in "to keep the rest of the body happy".

Cianna has an IVs in her neck, hand and groin; she's intubated, strapped down and sedated. The IV in her groin got changed to a bigger one for the addition of the Dopamine.  Unfortunately, there is more of a chance of a blot clot with a bigger needle.  She also had some discoloration in her groin at the IV site, but that went away after an hour or so.

The doctors (nurses? Case-managers?) had a consultation with Lin about 7 or so, and they are basically treating this like it's epilepsy, which is a "wastebasket" term for seizures.  They told Lin what kind of seizure it was, but she can't remember the term they used.  (She did say to be careful looking stuff up on the internet, as there is some misinformation out there!)  They will have preliminary results on the lung "gunk" Monday and the final results Tuesday.

Lin and Mimi were eating when I spoke with them and were going to try to get some shut-eye.

Keep them in your prayers!

Monday, March 5, 2012

We have to leave WHEN??!!

Christianna's Adventure really started over 2 years ago, on a cold January day with a home-birth surrounded by her loving family.  She was first thought to maybe have CP, but a genetic test has shown that she has extra genetic material on 2 of her genes. 

Her mom, Lin, has been wanting her to go to Ability Camp and has been in discussion with Kaitlin for many months.  Last Wednesday (Feb 29), Kaitlin called to tell Lin that they were going to be holding a mom and tots class - starting March 12!  Oh my!  Need to get a passport, need to get FML, need to, need to, need to.... Yikes! 

Going along to help her on this Canadian adventure is Lin's mom, Mimi.  I'm Lin's older sister, Aunt Mei, setting up this blog for Lin and Mimi to keep in contact with the rest of the family, friends and for anyone else looking to go the Ability Camp.

The plans are:  Mimi is flying to Indianapolis this Thursday and then Mimi, Lin and Cianna are heading out Friday after Lin is done at work.  They plan on getting into Milford, Ontario by Sunday.

We wish them safe and happy travels!