Just a few funnies from the past few days...
Lindsay talking to Hannah in the livingroom before we left for dance.
Lindsay: "Hannah, you need to work on your 'postulance' when doing your plie."
Hannah: "What?"
Lindsay: "You know, your 'postulance'!"
Hannah: * Insert Scowling Look that only Hannah can give. Ask Carie ;) *
Lindsay: "You know...STAND UP STRAIGHT-'POSTULANCE'!!!"
Me: "Sweetheart, you mean POSTURE."
Lindsay: "Well then what is 'postulance'?"
Me: "I think you mean 'POSTULANT'."
Lindsay: "Well the Sound of Music....."
Valentine's Day-
We are sitting at the dining room table having a candle light dinner with the kids. We were teaching them proper terminology for some words. Urinate, ect...
Darren: * Holding a piece of steak on his fork * "I am going to masturbate my steak."
Me: :-O
Darren: * BLUSH * "I said I am going to MASTICATE my steak"
Me: * Smacking head just waiting *
Gabe: "What is masturbate?"
Me: "Gabe, Daddy meant MASTICATE. Meaning CHEW"
Gabe: "Well then what is masturbate?"
Me: * Looks at Darren thinking how he will pay later knowing that Gabe will not drop this * "Well Gabe...gives medical explanation"
Gabe: "Cool"
Today on the way to dance I have an extra child in my car we will call her Clara. Lindsay was gabby and talking with Clara (who is 6) about how crazy their daddy's are...
Lindsay: "My daddy said he was going to MASTURBATE his steak!"
Me: "Lindsay...ZIP IT! Clara do not forget to remind your mommy that we have a flower meeting on Friday."
Clara: "What is masturbate?"
Me: "Oh sweetheart, she said MASTICATE. That means to CHEW. He was going to CHEW his steak. Aren't you excited to see your recital costume today. Remind me to show you!"
Now I will have to explain to her mom on Friday if this is brought up again. LINDSAY had a sit down to discuss what she SHOULD and SHOULD NOT repeat!!! :)
Wednesday, February 18, 2009
Friday, February 13, 2009
Surgery Take 2...
As many of you know Lindsay's first surgery was canceled due to our neurosurgeon, The Bow-Tied One, getting food poisoning. We were rescheduled numerous times before date 2/9/09 was agreed on.
Sunday 2/8/09
I dropped Gabe, Hannah and Fayeth off at Grampa's house (Pop's). Grampa really took time to sit and talk with Lindsay. Lindsay had a little more anxiety that she had in the past and I just chalked it up to her fear that surgery would be canceled again. A few nights earlier she had a nightmare that surgery was canceled. Grampa and Lindsay must have talked for 30 minutes. Grampa had more anxiety than he had in the past and got teary eyed while he was talking to Lindsay. My uneasiness grew a bit. I prayed it off. Grampa gave her a kiss and off Lindsay and I went to say see ya to Gramma at work. I told mom about how Grampa was teary eyed. Then we got teary eyed. I again had a bit of uneasiness about the surgery but I prayed it off. Then we went to the RMH. Darren was meeting us there after he got off of work.
While at the house we had a great dinner that a Greek Orthodox Church had made for the house. And we visited with a few people we know. We went to bed early in anticipation for the big day. I set the alarm for 7am.
Monday 2/9/09
6:54am I am awake. I decided to get up and check my email and whatnot. Lindsay wakes up at 7:45 and we putz around in bed just talking and giggling. I decide that since we have not gotten a phone call that we are a go for surgery. 8:10 I decide that I better show and finish packing. (we have to be in front of the RMH by 9am to catch the shuttle)
8:45am I am doing my hair and make-up adhd style and running around like a lunatic. :)
9:00am I am running out the front door of the RMH as shuttle pulls up.
9:15am we arrive at Comer. Make a pit stop in Child Life for Crayons and paper to make a friend a birthday sign
9:30am Arrive on 3rd floor surgery holding.
9:55-11:45am back in holding room. Finished paperwork. Joked with the Bow Tied one. They get us ready to take her back to the OR.
11:50am We walk to the double red lines, She gives us a hug and kiss and she leaves with The Bow Tied One and the Golden One.
12n I decide that it is okay to go for lunch to the cafeteria in the basement of Mitchell
12:10pm we arrive at the cafeteria, get our food and sit down.
12:23pm I call my mom to check out cell service in the basement.
12:34pm The Bow-Tied One leaves a VM message on my cell phone asking me to call the OR directly.
12:50pm We find medical records to get a copy of the kids medical records. We take a seat and wait.
12:56pm I get an alert that my cell phone has a voice mail message. It is the one left at 12:34pm from the Bow-Tied one. I tried to call the OR. It was busy. We leave medical records quickly to get back to Comer. Along the way I check almost every phone that I see. The line was always busy. I keep telling Darren that there is something wrong. He keeps telling me that she is fine.
12:59pm On Mitchell Bridge. Finally get an answer from that phone to the OR. On Hold.
1:01pm Finally speak to OR nurse. She asks if The Bow Tied one can call me back after he wakes her up. * ALARM SIGNALS IN MY HEAD* I said, But her surgery is 5+ hours. Nurse again says can he call me after he wakes her up. I explain that I am on Mitchell Bridge and that I would be in the OR waiting room in 3 minutes. I then ask if she is OK. Nurse replies, "She is stable.....Now". I hang up phone and quickly walk to elevators to go to 3rd floor.
1:03pm I arrive in OR waiting room. Desk nurse asks the minute we walk into the waiting room if I have spoke to anyone in the OR. Everyone looks at me. With THOSE eyes. The eyes of "Oh my God there is something wrong". I explain that I have and that the Bow Ties One will be calling me in a few minutes.
1:05pm The Phone never rings. All of a sudden The Bow-Tied One sticks his head out of the door and tells us that we need to come and chat in the conference room. My heart sinks. I want to vomit. My heart is beating so fast. I am freaking out on the inside.
1:06pm we are in the conference room. The speech begins and all I can think of is...Is she still alive.... She went into anaphylactic shock on the OR table. Her BP plummeted to 40/0, her heart rate went down, she started wheezing but was thankfully already intubated, she turned red from head to toe (literally) and developed hives. They gave her Benadryl and Steroids. That did not do the trick so they gave her epinepherine (many times) to sustain her vitals. Every time they turned it off she bottomed out again. They started her on a continuous epi drip and aborted surgery. They were in hopes to extubate her before bringing her to the PICU. It was due to a common used drug in the OR. Must wear medical alert bracelet because if she gets this med again she will die. Most hospitals use this med. She had a 1 in 1.1 million reaction. Spoke to Dr. Kr and other Drs while in the OR. Googled/researched reaction. No one has ever seen this reaction. I am thinking, * Breathe Michelle, Breathe.... She is alive. She is okay. Don't vomit on his shoes. I hate the conference room. Only bad news in conference room. OH MY GOD! We will still have to do surgery in the future * We are told to go to PICU waiting room.
1:12pm ish We walk through the waiting room. Everyone's eyes on us. We are THAT family. We are the family that NO ONE wants to be. The one that everyone pities and then breathes a sigh of relief that it is not THEIR child. I know what they are thinking. I am those types of people. Tears are running down my face. My baby almost died. She could have died. She did almost die. OH MY GOD! She almost died.
1:15pm PICU waiting room. Darren nor I speaking at all. Stunned. Silent. Fearful. Thankful. So Very Scared. Darren tells the front desk who we are.
1:19pm Called my mom. Left message that surgery was canceled. Call me.
1:21pm Called my mom's cell phone. She is in grocery store. I tell her as calmly as possible what happened. I start crying. End phone call. Cry more. Calm self.
1:27pm Spoke with MIL. Gave update. Got off phone. Cried more. Calmed Self.
1:35ishpm The Golden One comes in. Talks us through what happened. I start crying. She is in the PICU now. I ask to see her. He says yes that he has already made the nurses mad so who cares if they are more mad at him. I am mom and I am a nurse.
1:40ish We are in her room. Nurses not thrilled about allow this. I want to run away fast. She looks horrible but awesome all at the same time. I cannot touch her. I am scared. She looks so fragile. Her alarms and IVs are beeping. My heart breaks over and over again. My fear speaks up and I keep thinking what could have been and how lucky we are. But the fear creeps in. I sit in chair in the corner.
Sometime after this time Frim came in. We talked. Game Plans. Must talk with PICU & Anesthesiology & Immunology. Blah Blah Blah. I feel like bystander. As if I am not part of what is going on around me. Shock. Fear. Dark Place. Nurses come and nurses go. Drs come and go. We have a 1:1 nurse to monitor Lindsay. Lindsay only awakes with stimuli-deep pain. She is so far out of it. Lots of Fear and what could have beens. Very hazy about what happened...
My baby girl could have died. My baby girl had come very close to dying. Fear. Dark Place. Fear.
Sunday 2/8/09
I dropped Gabe, Hannah and Fayeth off at Grampa's house (Pop's). Grampa really took time to sit and talk with Lindsay. Lindsay had a little more anxiety that she had in the past and I just chalked it up to her fear that surgery would be canceled again. A few nights earlier she had a nightmare that surgery was canceled. Grampa and Lindsay must have talked for 30 minutes. Grampa had more anxiety than he had in the past and got teary eyed while he was talking to Lindsay. My uneasiness grew a bit. I prayed it off. Grampa gave her a kiss and off Lindsay and I went to say see ya to Gramma at work. I told mom about how Grampa was teary eyed. Then we got teary eyed. I again had a bit of uneasiness about the surgery but I prayed it off. Then we went to the RMH. Darren was meeting us there after he got off of work.
While at the house we had a great dinner that a Greek Orthodox Church had made for the house. And we visited with a few people we know. We went to bed early in anticipation for the big day. I set the alarm for 7am.
Monday 2/9/09
6:54am I am awake. I decided to get up and check my email and whatnot. Lindsay wakes up at 7:45 and we putz around in bed just talking and giggling. I decide that since we have not gotten a phone call that we are a go for surgery. 8:10 I decide that I better show and finish packing. (we have to be in front of the RMH by 9am to catch the shuttle)
8:45am I am doing my hair and make-up adhd style and running around like a lunatic. :)
9:00am I am running out the front door of the RMH as shuttle pulls up.
9:15am we arrive at Comer. Make a pit stop in Child Life for Crayons and paper to make a friend a birthday sign
9:30am Arrive on 3rd floor surgery holding.
9:55-11:45am back in holding room. Finished paperwork. Joked with the Bow Tied one. They get us ready to take her back to the OR.
11:50am We walk to the double red lines, She gives us a hug and kiss and she leaves with The Bow Tied One and the Golden One.
12n I decide that it is okay to go for lunch to the cafeteria in the basement of Mitchell
12:10pm we arrive at the cafeteria, get our food and sit down.
12:23pm I call my mom to check out cell service in the basement.
12:34pm The Bow-Tied One leaves a VM message on my cell phone asking me to call the OR directly.
12:50pm We find medical records to get a copy of the kids medical records. We take a seat and wait.
12:56pm I get an alert that my cell phone has a voice mail message. It is the one left at 12:34pm from the Bow-Tied one. I tried to call the OR. It was busy. We leave medical records quickly to get back to Comer. Along the way I check almost every phone that I see. The line was always busy. I keep telling Darren that there is something wrong. He keeps telling me that she is fine.
12:59pm On Mitchell Bridge. Finally get an answer from that phone to the OR. On Hold.
1:01pm Finally speak to OR nurse. She asks if The Bow Tied one can call me back after he wakes her up. * ALARM SIGNALS IN MY HEAD* I said, But her surgery is 5+ hours. Nurse again says can he call me after he wakes her up. I explain that I am on Mitchell Bridge and that I would be in the OR waiting room in 3 minutes. I then ask if she is OK. Nurse replies, "She is stable.....Now". I hang up phone and quickly walk to elevators to go to 3rd floor.
1:03pm I arrive in OR waiting room. Desk nurse asks the minute we walk into the waiting room if I have spoke to anyone in the OR. Everyone looks at me. With THOSE eyes. The eyes of "Oh my God there is something wrong". I explain that I have and that the Bow Ties One will be calling me in a few minutes.
1:05pm The Phone never rings. All of a sudden The Bow-Tied One sticks his head out of the door and tells us that we need to come and chat in the conference room. My heart sinks. I want to vomit. My heart is beating so fast. I am freaking out on the inside.
1:06pm we are in the conference room. The speech begins and all I can think of is...Is she still alive.... She went into anaphylactic shock on the OR table. Her BP plummeted to 40/0, her heart rate went down, she started wheezing but was thankfully already intubated, she turned red from head to toe (literally) and developed hives. They gave her Benadryl and Steroids. That did not do the trick so they gave her epinepherine (many times) to sustain her vitals. Every time they turned it off she bottomed out again. They started her on a continuous epi drip and aborted surgery. They were in hopes to extubate her before bringing her to the PICU. It was due to a common used drug in the OR. Must wear medical alert bracelet because if she gets this med again she will die. Most hospitals use this med. She had a 1 in 1.1 million reaction. Spoke to Dr. Kr and other Drs while in the OR. Googled/researched reaction. No one has ever seen this reaction. I am thinking, * Breathe Michelle, Breathe.... She is alive. She is okay. Don't vomit on his shoes. I hate the conference room. Only bad news in conference room. OH MY GOD! We will still have to do surgery in the future * We are told to go to PICU waiting room.
1:12pm ish We walk through the waiting room. Everyone's eyes on us. We are THAT family. We are the family that NO ONE wants to be. The one that everyone pities and then breathes a sigh of relief that it is not THEIR child. I know what they are thinking. I am those types of people. Tears are running down my face. My baby almost died. She could have died. She did almost die. OH MY GOD! She almost died.
1:15pm PICU waiting room. Darren nor I speaking at all. Stunned. Silent. Fearful. Thankful. So Very Scared. Darren tells the front desk who we are.
1:19pm Called my mom. Left message that surgery was canceled. Call me.
1:21pm Called my mom's cell phone. She is in grocery store. I tell her as calmly as possible what happened. I start crying. End phone call. Cry more. Calm self.
1:27pm Spoke with MIL. Gave update. Got off phone. Cried more. Calmed Self.
1:35ishpm The Golden One comes in. Talks us through what happened. I start crying. She is in the PICU now. I ask to see her. He says yes that he has already made the nurses mad so who cares if they are more mad at him. I am mom and I am a nurse.
1:40ish We are in her room. Nurses not thrilled about allow this. I want to run away fast. She looks horrible but awesome all at the same time. I cannot touch her. I am scared. She looks so fragile. Her alarms and IVs are beeping. My heart breaks over and over again. My fear speaks up and I keep thinking what could have been and how lucky we are. But the fear creeps in. I sit in chair in the corner.
Sometime after this time Frim came in. We talked. Game Plans. Must talk with PICU & Anesthesiology & Immunology. Blah Blah Blah. I feel like bystander. As if I am not part of what is going on around me. Shock. Fear. Dark Place. Nurses come and nurses go. Drs come and go. We have a 1:1 nurse to monitor Lindsay. Lindsay only awakes with stimuli-deep pain. She is so far out of it. Lots of Fear and what could have beens. Very hazy about what happened...
My baby girl could have died. My baby girl had come very close to dying. Fear. Dark Place. Fear.
Thursday, February 12, 2009
Beads Of Courage...
The University of Chicago Comer Children's Hospital is part of a wonderful program called The Beads of Courage. In the past only the hematology children had been part of this program. Recently one of our own very special Child Life Specialist (CLS) pioneered the neuroscience program with the Beads of Courage. We are the first neuroscience program to be part of the Beads of Courage.
For the kids it is a way to tell their story. This is what I have gone through. This is what I have had done. In December Lindsay started her strand of Beads. Since the program started in November/December anything that happened in the past you get 1 bead to show for it. So if you had 7 surgeries, you get 1 surgery bead. (Otherwise the supply would be depleated)
Each bead has a meaning...
Left to Right:
Tortoise-Lumbar Puncture, Blue-Clinic Visit, Black-Pokes (IV in this instance), Light Green-Scans (MRI in this instance), Dark Green- NPO (Nothing by mouth)
Left to Right:
Beige-EVD Placement (Drain placement), Star-Surgery (Drain placement) COURAGE Charm-you get for your 1st surgery, Yellow- Overnight stays, Dark Green-NPO, Brown-Lying Flat, Black-Pokes, The bluish one I believe is for her drain removal, Light green-MRI
Her Courage Charm
Dark Green-NPO, Star-Surgery (yes she still got one because she made it to the OR), Bee-Her Extradordinary Occurance Bead- (anaphylatic shock to general anesthesia), Black beads-Pokes (I accidentally shorted her 4 beads. She counted her "pokes" after we got home and she was poked 7 times), Agua- Tube placement (Catheter), Square Heart-PICU, Yellow-Overnight.
I am not sure that everyone will appreciate the humor, however when Anne from Child Life said a Bee Bead for her anaphylactic reaction we all laughed. It was only fitting.
Her Current Count on Beads. I have shorted her a total of 5 beads (4-pokes, 1-morphine)
For the kids it is a way to tell their story. This is what I have gone through. This is what I have had done. In December Lindsay started her strand of Beads. Since the program started in November/December anything that happened in the past you get 1 bead to show for it. So if you had 7 surgeries, you get 1 surgery bead. (Otherwise the supply would be depleated)
Each bead has a meaning...
These beads are for procedures/experiences before the program started
Left to Right:Tortoise-Lumbar Puncture, Blue-Clinic Visit, Black-Pokes (IV in this instance), Light Green-Scans (MRI in this instance), Dark Green- NPO (Nothing by mouth)
These beads are from her Lumbar Drain Trial
Left to Right:Beige-EVD Placement (Drain placement), Star-Surgery (Drain placement) COURAGE Charm-you get for your 1st surgery, Yellow- Overnight stays, Dark Green-NPO, Brown-Lying Flat, Black-Pokes, The bluish one I believe is for her drain removal, Light green-MRI
Her Courage Charm
Our most recent visit.
Dark Green-NPO, Star-Surgery (yes she still got one because she made it to the OR), Bee-Her Extradordinary Occurance Bead- (anaphylatic shock to general anesthesia), Black beads-Pokes (I accidentally shorted her 4 beads. She counted her "pokes" after we got home and she was poked 7 times), Agua- Tube placement (Catheter), Square Heart-PICU, Yellow-Overnight. Her Special Bead
I am not sure that everyone will appreciate the humor, however when Anne from Child Life said a Bee Bead for her anaphylactic reaction we all laughed. It was only fitting. Her Current Count on Beads. I have shorted her a total of 5 beads (4-pokes, 1-morphine)
35 Beads, not including the 5 I accidentally shorted her.
She is very proud of her beads. They tell a story. It is something she can share and it makes the pokes, scans, starving, pain all worth it.
Over the next few days maybe weeks I will be posting the hospital stay. I ask now that you just bear with me. There is a lot going on in my head and if it is just too much to read please just don't read it. I need a place to put my feelings because I cannot talk about it much when the kids are up. Please bear with me. It is not a pity party that I will be having, but more of a 1 sided therapy session with my blog.
Much love to all of those who prayed for us. It was due to prayer and God's Amazing work through the Doctors that instead of what could have been a very negative outcome, we had a positive outcome.
Love to all...
Over the next few days maybe weeks I will be posting the hospital stay. I ask now that you just bear with me. There is a lot going on in my head and if it is just too much to read please just don't read it. I need a place to put my feelings because I cannot talk about it much when the kids are up. Please bear with me. It is not a pity party that I will be having, but more of a 1 sided therapy session with my blog.
Much love to all of those who prayed for us. It was due to prayer and God's Amazing work through the Doctors that instead of what could have been a very negative outcome, we had a positive outcome.
Love to all...
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