Getting down to business

This morning they brought Gracie breakfast of scrambled eggs and pancakes. Everything is pureed, almost like baby food, but it tastes like normal food. It makes her have more of a desire to eat. She has been talking A LOT more. This afternoon I was singing the B-I-B-L-E to her (again, it's her favorite!) and when we got to the part where you yell Bible she was silent. So I asked her what the B-I-B-L-E spells and she still didn't answer. I was a little disappointed, then she said "Mommy, Jesus." I asked her what about Jesus and she said "Jesus in mommy heart". My little girl might be having a hard time expressing herself, but she KNOWS. She knows. She's in there and she knows. Good is just not the word for what God has been to us. Wonderful, Excellent, Marvelous, Incredible, Magnificent!! Merciful, Loving, Kind, True... I could go on for days.

The ophthalmologists were in a little while ago. Her eyes look perfect, so we are playing the wait and see game. The stroke definitely affected her vision, but as her brain heals, her sight might heal as well. She definitely does react to light, which is a good sign.

She also had physical therapy today, and the therapist decided to try and stand her up. She did well. She is in NO way ready to stand on her own (she can't even hold her head up for very long), but she's trying. She also did the arm movements for Rolled Away for her ( as well as she can when the good arm has an IV board and the other doesn't move well). I could tell she was impressed...

The Nursing Assistant was just in a minute ago to do her vitals. Gracie counted to 10 with her!!

Out of the PICU

Happy Day! Gracie has been moved from the PICU to a regular toddler floor.Tomorrow, we will be having another ophthalmology consult. I am convinced there must be some way they can tell us if she is completely blinded or not. I am also hopeful that St. Mary's will be back in so we can figure out whether they will take her. She is slowly eating more by mouth (still just pudding/yogurt) but more volume and more often, so she might be able to get rid of the NG tube soon.
She got a sweet little roomie tonight, a 4 year old girl. Poor baby has a lot going on...

Some people have been asking for specific prayer requests. Here are a few:
1. Answers about Gracie's vision. We are totally ok with whatever God has decided to do, but not knowing is hard. We need to start planning for the future now.
2. I've been getting a lot of information thrown at me, most recently about wheelchairs. She will need one for a while at least, and the prices are CRAZY!! I know God will provide, so pray for me not to worry about it.
3. I feel I had lost sight of the great gift God had given me with the incredible testimony of Gracie's birth. I have been able to share Jesus with a few people since her illness. Pray for me to be bold for Him.
4. A little girl named Peyton. She is the surviving identical twin of one of the families at the RMH. Tomorrow, she will have very a dangerous surgery for necrotizing enterocolitis.

Some talking

Gracie has been trying to talk more the past couple of days. She has said "hi, Mommy, Josiah, George, amen, and Elliana." Last night, I walked in and she was laying down. I knew she had heard me, so I said "Hi Gracie, Mommy has to wash her hands." I heard "Hiiiii", in a very sing song voice...and it was her. This morning she talked to my mom quite a bit. She also said hi to a nurse today, the first time she has spoken to anyone but one of us. Hopefully, now they won't think we're crazy!

My dad got to go in and see her yesterday. It was very hard for him, but she tried to respond to him. She is TRYING to smile in the picture. My beautiful girl...she REALLY needs her hair evened out on the right side!!

Happy Thanksgiving!

Wow, it's already been a week since Gracie had her surgery. We have SO much to be thankful for!! Gracie is doing so much better than she was, even just yesterday. I am going to try and go to the RMH for dinner at 3pm, a hotel called the Strathallan is coming to cater dinner. I am sure it will be great.

Back from dinner...I got a ride to the House in a huge Hummer limo! Dinner was great, albeit different. It's Josiah's first Thanksgiving and he loved it all, especially the pumpkin pie!!

Awake -vs- conscious

I have been using the word awake to describe Gracie's state. I am now realizing that this does not give a good enough description. Gracie is intermittently conscious. She is still not completely aware. She opens her eyes, briefly, but she does not focus. Chances are good that she has been at least partially blinded. She has been doing big cat like stretches today, and she moves her left arm and leg often. This is not normal movement though, it is all neurological. She can't get comfortable, so she moves all over. Imagine if you had a leg cramp and you were dancing all over trying to get rid of it, kicking your leg, bending and stretching it. Those are the types of movement we see from Grace. It's MOVEMENT though, and that is what counts at this point.

Extubated!

Grace got the tube out at about 1pm. So far she is doing great on a nasal cannula. Please continue to pray for her, that she's ready to breathe on her own. I worried about this so much, because the intubation is what caused her lung to collapse. If she can't handle breathing for herself, then they will have to re-intubate her and risk doing more damage.

The nurse just came in and washed Gracie up and brushed her teeth (which she hated). Now she smells like my little lady again. She tolerated it very well, and then stayed awake while I read to her from the Bible and sang some of her favorite songs. I think it's the longest she's been awake in 10 days. It's amazing...she gets very agitated and starts to flail around a lot. I sit down next to her and read to her from the Bible and she calms right down. God's Word is powerful!!

Quite a bit going on today!!

So, today was the last day at the hotel. Praise the Lord, we were able to get into the Ronald McDonald House. For any of you who have never had any experience with RMH...let me just give you a run down. They give you a place to sleep, a crib for the baby, a chair to rock him, internet access, shuttles to and from the hospital, television to watch, books to read, washer and dryers. You come home from a long day at the hospital and dinner is ready and it's ALWAYS good. You have a place to store food, a high chair to feed a baby normally, comfy couches to relax on. They ask how the day was...they learn your child's name and diagnosis. They LOVE you. They SUPPORT you. I'm not big on McDonald's food... but I absolutely love the House!!

The respiratory therapy started today. I can barely stand to be in the room. The nurses take the part that they usually put over the mouth when giving oxygen, and they thump her little chest with it. They call it cupping. She's all red when it's done, but it seems to really help, and that IS what is important. She also had physical therapy in today. She will be coming to work those limbs so hopefully, my girl will walk again someday.

Big plans for tomorrow...they want to try and extubate her!!

Stroke damage

The MRI has come back. The stroke damaged the left side of her brain, the occipital and posterior temporal lobes. The left side of the brain controls the right side of the body, which explains the tenseness in her right extremities. There is a good chance she will end up paralyzed on the right side. The occipital lobe is responsible for sight. I have been wondering about blindness for a few days. We will not know anything until she can talk more though, and she will probably not be able to speak for a while. Usually, speech is very affected by a stroke. We will see when the tube comes out of her throat. She does perform VERY simple commands, though it takes a little time. I asked her to stick her tongue out at me. It was somewhat humorous...I could see her trying to do it. Really thinking about it...then she stuck it out and looked so proud. It all took about a minute. She's our little fighter!

MRI day

Well, Grace will be having an MRI today. She has to lay completely still for the entire thing, so the nurse told me she might have to give her a paralytic. That really...I don't know how to explain it. It doesn't scare me...it's just so UNNATURAL. I thought that the MRI was to check the shunt...no, it's to verify the stroke. HUH? It's been verified by every doctor and nurse that comes in the room.

When she woke up earlier, it looked like she was trying to say "Mommy, I love you." The nurse saw it too...she was very excited for us. I know my little princess is just waiting to talk to me. It might be a long road back...but we still know a God of miracles.

Sleeping peacefully...

Today has been a very hard day to be here. My poor girl is trying SO hard to wake up and stay awake, but she's in pain, so the doctors keep upping the sedation and giving her Ativan. It is incredibly hard to sit next to her, knowing she is in pain, and not even try to help her. She did have another CT scan today, and it looked better. There wasn't a whole lot of change from the last one though, because the external shunt was doing the job of the one that failed.

I think I drive the nurses here crazy. I just have a lot of questions and I want them to be answered. Gracie is getting the PediaSure again, which is good. The next thing to do is to get her off of the ventilator. Once she's able to breathe on her own (or at least just with a nasal cannula), they can move on to restoration.

I can't wait to hear her little voice again. Every morning she would sit up in bed and say "Mommy, I waked up. Waked up, Josiah!" The last thing she really said to me was "that your blueberry coffee, Mommy?" Oh, to hear those words.

Surgery is done

The OR called at 6:45 to tell Gracie's nurse she was to be there in 15 minutes. (Her nurse looks like Dora the Explorer by the way) They are supposed to give them at LEAST an hour to prepare...and 7 is shift change. AHHH...what a way to head to surgery, with a stressed nurse. She handled it VERY well though, she's a very sweet girl.

We went to tell Dad and Amanda that she was going in then paced the waiting room. It was only about an hour and 15 minutes when Dr. Silberstein came up. The revision went well, but the stroke did affect quite a bit of her left lobe of her brain. There is a good chance she will be blind, and possibly paralyzed on her right side.

Oh...and she's bald on top!! Still gorgeous though!

Long night...

Gracie CO2 crept up last night. Thankfully, she has what is called a blood gas every hour because she is on a ventilator, and the nurses caught it before it was dangerous. Basically, our bodies are meant to excrete the carbon dioxide we breathe in, but sometimes have a hard time when air is being forced through the vent. They have changed her vent settings just a little and will keep a close eye on her gasses through the day. Her magnesium levels have also dropped, so she is getting that in her IV as well.

Dr. Silberstein was in just a few minutes ago and said he was going to try and get her on the schedule today for the surgery to revise/replace her shunt. Whoa, nervous mommy!! We thought we had until Monday, at the least!! He told me that the external shunt that Dr. Kung placed has done it's job well, but that since it is external, it's VERY susceptible to infection. This is why he wants to get her in ASAP. So, we'll see...if the OR remains open between 4 and 6 pm, it's hers. I will keep you posted!! Thank for the prayers.

Central line is in!

The central line is in and they have also placed an NG tube so that she can have some PediaSure to "eat".

Jesus Never Fails

Gracie is sleeping, which is exactly what she needs to be doing. I am so thankful that I have my God right here beside me right now...and ALWAYS. People wonder about faith...try Him out. He is tested and True...Jesus NEVER fails. My baby girl believes this. Her favorite songs are the BIBLE and Rolled Away. She loves to pray. Ask her why we love Jesus..."cause He loves Gracie." And He loves me and He loves YOU.
I've been singing this song a lot.
Jesus Never Fails
So many souls have tested Him throughout the course of time.
So many still reach out to Him with broken hearts and minds.
And every one of them will say,
Without exception that they find…
Jesus never fails...

Even in the days of old, He brought His people through.
And then He came to show His love and died for me and you.
Then He rose again to prove,
That every story has been true…
Jesus never fails…

Jesus never fails. Jesus never fails.
You might as well get thee behind me, Satan
You cannot prevail, because Jesus never fails.

Sometimes this world brings trouble I find so hard to bear.
I know I could not make it without Jesus being there.
It’s so encouraging to know,
How ever deep we’re in despair…
Jesus never fails.

So what can I do to prove to you, tell me how can you deny?
No untold facts, no mysteries, it’s all so cut and dried.
On the witness stand of your life,
I’ll be the first to testify…
Jesus never fails!

You might as well get thee behind me, Satan
You cannot prevail, because Jesus never fails.
Never fails…

Central lines and pneumonia

Today, the doctors will be attempting to place a central line in Gracie ( This type of catheter is inserted into a vein at one location (neck, chest or groin), and tunneled under the skin to a separate exit site, where it emerges from underneath the skin. It is held in place by a Dacron cuff, just underneath the skin at the exit site. The exit site is typically located in the chest, making the access ports less visible than if they were to directly protrude from the neck. Passing the catheter under the skin helps to prevent infection and provides stability.) She will have to be sedated even MORE than she already is, and it could be up to a 2 hour procedure. Wow. I can't help but remember the PICC line in the NICU. I still shudder when I think of what might have happened had Kris not noticed the small changes. Now, the old "bullet hole" is just one of many NICU wounds, and they tell a story of amazing resilience, strength, and of course GRACE.
 She does have aspiration pneumonia and a collapsed lung. Her lung probably collapsed when they intubated her in Elmira, but there was no other choice. I was told they would start respiratory therapy with her today or tomorrow, to help get the nasties out. She gives us GOOD caughs and cries when she coughs though....good signs!
Gracie is lying on a cooking blanket. When we got here, she actually needed it to bring her temperature down, it was lingering between 105 and 106 for quite a while. Now, they are keeping her "on the cool side" about 96-97, because the brain heals better at cooler temps.

Starting to get some answers...

Well, it looks like Grace definitely had a stroke. According to the CT scans done here. It's so strange here sometimes...they have her on this drug called  Remifentanil. It is a drug to sedate her, but she comes off of it quicker than others. When she gets agitated, the nurses come in and give her Ativan. Then they'll come in 10 minutes later to do a neuro check and say " Grace, open your eyes." over and over. Hello!! You just sedated the child!! Then they go outside and talk about how she looks from a neurological standpoint. In any other situation, I might find it humorous. I realize that they are just doing their jobs...rest IS what she needs.

I miss my girly-bug. That's the reason for the butterflies on the page...when she was in the NICU we called her flutterbug, because she fluttered up and down in her stats. She graduated to girly-bug and that's been my favorite nickname for her ever since. I can't believe just the other night, she waited up for me to get home from my birthday party. She accidentally squirted lotion all over my brand new shirt...then laughed because it smelled pretty. We played with balloons and caught up on our day... she was SO excited to eat my birthday cake the next day.
^"What time I am afraid, I will trust in thee.  In God I will praise his word, in God I have put my trust; I will not fear what flesh can do unto me."

I wish I was wrong...

Unfortunately, I was not. The doctor came in this morning and saw Grace. I told her right off the bat that I did not think Grace had the flu, or that if she did, it was not the only thing going on. I was ALMOST sure this was a shunt problem. She checked her over and said she would contact Dr. Silberstein when she got to the office. I said no. We needed to get something done right then. So, she contacted him, and he told her to do a CT of the shunt. On the way there, she was completely limp, and her eyes rolled back into her head again and she stiffened all up. I said "Does that look like the flu to YOU?" to the doctor. She didn't answer me. They got her out of CT and on the way back up, I knew she was having trouble breathing...no one else seemed to notice. We got back to the room and she had to be bagged because she wasn't breathing. Finally, people started to LISTEN and move. Before I knew it we were on our way to the ICU and then the scan was coming back that she had shunt blockage and failure. She would need to be life flighted to Rochester in the helicopter once they stabilized her. She was intubated and put on a ventilator. I never thought I would see her like this again. I was very faint and I almost passed out, so they made me sit in a wheelchair. They took us into a room in the ICU to start making arrangements to get to Strong. Our Pastor walked in and he took over, thank God. I was not even able to think straight, but he helped us get everything ready. Someone from the Childrens Miracle Network came in and gave me some money to help us get there. We thought we were getting ready to leave when Dr. Kung walked in. He's the only local neurosurgeon we have, but he doesn't usually do pediatric cases. Dr. Silberstein had him pulled out of emergency surgery to come and consult on Grace. He found HIGH intercranial pressure from the shunt failure and had to QUICKLY do a procedure in order to relieve some of it. So, she has a hole in the front middle of her skull, with an exterior shunt. Her head had to be partially shaved. At this point, they were ready to get her out of there. Nobody was able to fly with her because of the weight of the vent. Pastor wanted to, bless him...I am terrified of flying. A friend from church, Carolyn came to the hospital and drove us to Rochester. She got us there in record time. When we got there, they didn't let us in right away, but did tell us she was doing OK. Only 2 people are allowed in to the PICU for her ENTIRE stay...and Josiah is not allowed in the hospital at ALL because of H1N1. It's all for protection purposes, but it sure does make life more difficult.

What we know so far:
-She has probably had a stroke
-She has had total shunt failure
-Need to get her high temperature under control
-Will need to have a shunt revision once she is medically able

Thank you for your prayers.

Something is wrong

 I really don't know what to do. All Grace can do is lay in the bed, hold her head, and scream. A deep, guttural scream. I'm honestly not sure that my baby girl even recognizes me. I have gone out to get the nurse about 15 times, and she still says that this normal for the flu. I'd like to believe that. The doctor should be in to round in a few minutes though...and if she doesn't take me seriously, we ARE walking out of here and going to Rochester.

In the hospital

Well, we got up this morning and my girl just wasn't acting any better. So I took her to STP and we were admitted. She needs IV fluids...they think it's the flu or a virus. The more the day goes on though, the more my brain is screaming shunt. She's just not getting any better...and the nurses are NOT listening to me. I know she had a shunt series...I held her down for it. I also know that the techs didn't seem to have any idea whether it was a good scan or not. This is MY CHILD...is it too much to ask that they check her? If she starts having diarrhea and puking, I swear, I will eat humble pie and LOVE it.

Her shunt line is bright red and raised...the nurse says that it's not a sign of shunt problems...HMMM...that's not what Dr. Silberstein told us....

November 14, 2009

I had to take Gracie to the ER by ambulance today. She hasn't been feeling well for a couple of days, nothing too big, just a little virus. Today, after we got up, she threw up her Tylenol and then completely stopped responding to me. She was just sitting there staring up into space, her eyes completely glassy. I knew right away she was having a seizure, even though she never actually had any rhythmic movement. She was completely unresponsive when the ambulance and police got there. I was so scared...I rode in the ambulance, and the man in the back was very rude. He somehow got the impression that I hit her head and she lost consciousness. Then he asked if this was her normal state, since she has hydrocephalus. UGH.It really bothers me when people make stupid assumptions. Anyway...we got her there and she had started to perk up. She DID have a high temp, so the doctor thinks it was a febrile seizure. He did a shunt series just in case, it came back fine. He checked for both flu, strep, did a urinalysis...everything came back ok. So, she had half a bag of IV fluids, and now we are home. She's acting somewhat normal...just very tired. We'll see how she is in the morning...I just don't feel right...