Thank goodness that I love this child to bits and pieces!!! Hannah has been able to read since she was 3, in the past 2 years GETTING her to read to us has been a challenge. She will read to Lindsay or she will "struggle" through a pre-reader and start crying about how hard it is or she will just sit there and stare blankly at the pages and tell us she DOES NOT KNOW HOW TO READ! She is a challenge. Everything else I can get her to back down from. This I cannot. So we walked away from reading for a while. Last week she read me a book. I gave her much positive praise the hole shebang. I repeatedly told her how proud I was of her. Then I asked her...
Me: Hannah, why won't you read to me when I ask you to?
Hannah: You do not give me everything that I want.
Me: Yes Hannah I am aware of that because it will teach you in the long run to earn things and that you can't have everything you want in that moment.
Hannah: With all do respect Mommy, then why should I give you everything that you want?
Wow! I will say I had to walk away for a moment because she has a valid arguement. However we have since discussed the fact that she needs to respect me and do as I say....
As of today she is no longer able to read. *Rolls Eyes*
***UPDATE*** AS I was typing this she was downstairs. She read 3 pathetically easy books to Darren. AH! That child of mine. She MIGHT be the death of me.
Monday, March 16, 2009
Monday, March 09, 2009
Surgery Take 3...
(Started Sunday March 8)
It is hard to believe that it was just a week ago that I was lying in bed trying to go to sleep for Lindsay's surgery. I remember being panicked that her new onset cold symptoms would progress and she would developed a fever and wheezing and that the surgery would be canceled. As scared as I was of surgery and the potential for another anaphylactic reaction I was more scared that they would cancel it. The weeks following her first anaphylactic reaction brought worsening of her symptoms. Her pain would get so bad that all she would do some days would be sleep while others she would not sleep for days. She was confused and having a hard time remembering how to turn off the faucet and actually argued with me over how old she actually was. She could not remember turning 7. She would forget words, like strawberry or blueberries and well, she was just a mess! She looked bad and in all honesty to say that she looked like death warmed over would not have been a lie.
Unfortunately there is no shuttle to the hospital from 5:00am-7:30am so we loaded up the car with the suitcases and we headed to the hospital. We parked at 5:48am and we were to the surgery holding room by 5:58am. (We had to be there at 6am) We filled out the paperwork and joked with Ronie (the NORMAL Desk nurse) and got settled until they called us.
6:30am they called us back to the pre-op room. Lindsay got undressed and redressed in her amazing hospital garb.
Everyone came in and started their paper work. Our pre-op nurse put Lindsay's pink band on her which means that Neurosurgery needs to fill out their H&P. Lindsay was so tickled she had every intention of telling Dr. Frim when he walked in that she had a homework assignment for him. Everyone knew who we were before we came and and knew what Lindsay had happen to her the previous attempt at surgery. Everyone was very compassionate and understanding and were just wonderful. The NS resident Dr. T came in and started going over the consent form with me. Lindsay was sitting on the chair with her Build A Bear "Leah" and was talking with my mom and Darren. Dr. T must have caught her attention and while he was telling me in great detail about the potential risks in the surgery he says to me that "While advancing the shunt tubing into the foramen magnum the shunt catheter is suppose to run parallel to the brain stem. However the brain stem or the cerebellum can be hit and cause problems that can affect the entire body." Lindsay said, "Ummm Hello!!! I SOOOO did not need to hear that!" Dr. T and I both we sort of floored that she was paying attention and then *I* started to laugh at the look of horror on his face as he realized that this little person put him in his place. He then told her that she did not have to listen any more and Lindsay went back to listening to Gramma and Daddy. As Dr. T went over the blood transfusion consent he was telling me again the potential causes for her to need blood and he said, "Bleeding is not uncommon during surgery and if it became an issue we would need consent to give her a transfusion to keep her alive." Lindsay again said, "I soooo did not need to hear THAT either!". We just laughed! What could we do. Dr. T tried to make us feel better by saying that it was a 1 in 1000 or 1 in 10000 chance that she would need a blood transfusion. I just laughed at Dr. T and said, "Stats never tend to go in our favor! You know her allergy issue!" He laughed and said, "So very true!"
Our amazing Tracy from Child Life came and got Lindsay and her mask set up, Dr. Caitlin (anesthesiologist) came in and again went over the game plan with us and specifically told us what meds were being given at what times and that all the meds that were needed to treat her anaphylaxis were already drawn up and ready to be given if necessary. Everything was in place to do this surgery.
7:35 am and it was time to start the walk. The dreaded walk to the red line. Lindsay was quite literally running to the OR because she was ready to feel better. She stopped the at the red line and gave us all hugs and kisses and headed on her merry way. She looked back and waved as she was dragging the NP and the residents and Tracy down the hallway. I then started crying as the door closed. I had an instant of panic. Where I wanted to run through the red doors and snatch her back up, but I knew that this was in God's Hands and all would be good.
We went back to the waiting room where my buddy Ronie gave me a lecture that I needed to go and eat before she got out of surgery and how I needed to take care of myself. She told me that I was not to leave the surgery waiting room without a pager. They needed to know that they could get a hold of me ASAP. I had just finally gotten all calmed down when Tracy brought out "Leah". I again started to cry. (As I am doing now) She gave me the pep talk and told me that she would check in on her whenever I needed her to. To have Ronie call her and she would immediately get an update on Lindsay. I told mom and Darren that if we could make it to 9am without a call she did not have a reaction and they were good to go.
We spoke with another family whose baby was having a hernia repaired. The baby was a twin. We talked about life with twins. I then just felt the need to be quiet and pray. Darren was sleeping.
Do you believe that is how the miserable bastard deals with stress? HE SLEEPS???
8:55am the phone rings and is for us. I go back to the phone and it was Dr. Frim. All was good. Lindsay was sedated in a very deep state of sleep with LOTS of anesthesia meds on board and she was face down positioned for surgery. I specifically remember asking. "So, NO reactions then?" to which Dr. Frim replies, "Not yet, at least". To which I replied, "My you are quite witty today!" He tells me to go and have breakfast that it would be a long surgery and that I needed to take care of me. He told me that at any point that I wanted an update that all I had to do was have Ronie call back to the OR. He said she knew we were given the OK and she would assist us anyway possible.
9:30am we decided to head to DCAM and get coffee/soda. Ronie gave us a pager and he told her exactly where we would be. We sat in DCAM cafeteria for over an hour. Around 10:40 we headed back to Comer. Mom and Darren needed some fresh air so we went to the ER enterance. It was cold and *I* do not need "Fresh Air" so I waiting in the warm ER waiting room. Our friends, Amanda and Tommi, arrived for Amanda's MRI appointment. We chatted and walked to the MRI waiting room. We met up with another mom whose son is a Frim patient also and we met when we were in playroom in December. (We were all here at the same time) By 11:05am we were back in the OR waiting room.
11:10am Phone Rings-It is for us. I get the phone and it is Dr. Frim. He tells us that part one of her surgery is completed and they have flipped her to start parts 2 and 3. Still no reaction and she is wonderfully stable. He told me that the needle used to pierce the dura and advance the shunt tubing was 10-12cm long and when he pierced her dura CSF filled the needle and shot out the other end. He said that he drained a large amount of fluid. He said he would be in the OR until around 1pm.
11:30am We decide that we should eat. We headed back to DCAM and Ronie gave us the pager back. We had lunch and tinkered around. Finally at 12:30 I said we had to get back to the surgery waiting room. When we got back there within minutes we had another call from Dr. Frim. They were done and were closing and it would be another 30 minutes or so.
12:40pm Tommi comes to visit while Amanda is in MRI. Amanda has made a bear for Lindsay. (A very cute bear, btw)
1:05pm Frim came out to talk to us. Lindsay's surgery was boring :). He decided to check her pressure before he connected the tubing and her pressure started at 29 and jumped to 39. That was not including the large amount of CSF he drained before. I about had a coronary when he said to us, "I have a confession to make". Earlier in February the U of C had to do some major layoffs due to the current economic status. On of Dr. Frim's colleagues was very down during this time and so Dr. Frim was telling her it could be worse. He had a little girl emailing him and begging for surgery. So he shared Lindsay's emails with his colleague. His colleague just happens to be the COO of the Medical Center. She was so taken with Lindsay's emails that she wanted to meet her while she was in the hospital. He asked us if we would mind and we told him that she was more than welcome to come and meet Lindsay. After about a 20 minute chat we decided it was time to head to the PICU to find Lindsay. When I arrived at the PICU I informed the ward clerk that we were Lindsay's parents and wanted to see her ASAP. I got the "We are stablizing her" speech and I told the clerk, "Yeah, I am a nurse and I want to see her ASAP!"
The computer system was down so the only meds she could have was morphine. Dr. Frim and the "power team" (The NPs) stopped by to check on her. Lindsay was holding his hand telling him how badly she felt and they were pushing the morphine. After they left Lindsay rested for a bit then woke up again looking a little like this:
She informed us that she felt horrible and she know that Dr. Frim did something wrong during surgery. We all could not help but laugh. Fresh little girl she is. ;) Dr. K (Anesthesiologist) came in Lindsay informed her that she felt horrible and that Dr. Frim had to have done something wrong during surgery. Dr K could not HELP but find this funny and wasted no time in tell Dr. Frim.
Gramma makes it all right in the world...
Around 9pm. Lindsay has started to run a fever and her O2 Sats are low. The reason for the purple lips...Purple Popsicle...
4:49 AM. Lindsay on oxygen to keep her levels up
(to be continued)
It is hard to believe that it was just a week ago that I was lying in bed trying to go to sleep for Lindsay's surgery. I remember being panicked that her new onset cold symptoms would progress and she would developed a fever and wheezing and that the surgery would be canceled. As scared as I was of surgery and the potential for another anaphylactic reaction I was more scared that they would cancel it. The weeks following her first anaphylactic reaction brought worsening of her symptoms. Her pain would get so bad that all she would do some days would be sleep while others she would not sleep for days. She was confused and having a hard time remembering how to turn off the faucet and actually argued with me over how old she actually was. She could not remember turning 7. She would forget words, like strawberry or blueberries and well, she was just a mess! She looked bad and in all honesty to say that she looked like death warmed over would not have been a lie.
That night when we got to the RMH Lindsay started with cold symptoms. Nothing major, just a runny nose. Then the sneezing started and the nose would not stop running. Panic began to set in and fear of the next day arose. Darren went to bed early and Lindsay, my mom and I watched The Nutcracker DVD. It was beautiful! We went to bed around midnight. Sometime either just before 2 or just after 2 I fell asleep. However worried that I would oversleep the alarm I was up and down about every 45 minutes. 4am rolled around and I got up and going. Everyone needed to shower and Lindsay needed her hair dried and braided.
Unfortunately there is no shuttle to the hospital from 5:00am-7:30am so we loaded up the car with the suitcases and we headed to the hospital. We parked at 5:48am and we were to the surgery holding room by 5:58am. (We had to be there at 6am) We filled out the paperwork and joked with Ronie (the NORMAL Desk nurse) and got settled until they called us.
Everyone came in and started their paper work. Our pre-op nurse put Lindsay's pink band on her which means that Neurosurgery needs to fill out their H&P. Lindsay was so tickled she had every intention of telling Dr. Frim when he walked in that she had a homework assignment for him. Everyone knew who we were before we came and and knew what Lindsay had happen to her the previous attempt at surgery. Everyone was very compassionate and understanding and were just wonderful. The NS resident Dr. T came in and started going over the consent form with me. Lindsay was sitting on the chair with her Build A Bear "Leah" and was talking with my mom and Darren. Dr. T must have caught her attention and while he was telling me in great detail about the potential risks in the surgery he says to me that "While advancing the shunt tubing into the foramen magnum the shunt catheter is suppose to run parallel to the brain stem. However the brain stem or the cerebellum can be hit and cause problems that can affect the entire body." Lindsay said, "Ummm Hello!!! I SOOOO did not need to hear that!" Dr. T and I both we sort of floored that she was paying attention and then *I* started to laugh at the look of horror on his face as he realized that this little person put him in his place. He then told her that she did not have to listen any more and Lindsay went back to listening to Gramma and Daddy. As Dr. T went over the blood transfusion consent he was telling me again the potential causes for her to need blood and he said, "Bleeding is not uncommon during surgery and if it became an issue we would need consent to give her a transfusion to keep her alive." Lindsay again said, "I soooo did not need to hear THAT either!". We just laughed! What could we do. Dr. T tried to make us feel better by saying that it was a 1 in 1000 or 1 in 10000 chance that she would need a blood transfusion. I just laughed at Dr. T and said, "Stats never tend to go in our favor! You know her allergy issue!" He laughed and said, "So very true!"
Our amazing Tracy from Child Life came and got Lindsay and her mask set up, Dr. Caitlin (anesthesiologist) came in and again went over the game plan with us and specifically told us what meds were being given at what times and that all the meds that were needed to treat her anaphylaxis were already drawn up and ready to be given if necessary. Everything was in place to do this surgery.
7:35 am and it was time to start the walk. The dreaded walk to the red line. Lindsay was quite literally running to the OR because she was ready to feel better. She stopped the at the red line and gave us all hugs and kisses and headed on her merry way. She looked back and waved as she was dragging the NP and the residents and Tracy down the hallway. I then started crying as the door closed. I had an instant of panic. Where I wanted to run through the red doors and snatch her back up, but I knew that this was in God's Hands and all would be good.
We went back to the waiting room where my buddy Ronie gave me a lecture that I needed to go and eat before she got out of surgery and how I needed to take care of myself. She told me that I was not to leave the surgery waiting room without a pager. They needed to know that they could get a hold of me ASAP. I had just finally gotten all calmed down when Tracy brought out "Leah". I again started to cry. (As I am doing now) She gave me the pep talk and told me that she would check in on her whenever I needed her to. To have Ronie call her and she would immediately get an update on Lindsay. I told mom and Darren that if we could make it to 9am without a call she did not have a reaction and they were good to go.
We spoke with another family whose baby was having a hernia repaired. The baby was a twin. We talked about life with twins. I then just felt the need to be quiet and pray. Darren was sleeping.
Do you believe that is how the miserable bastard deals with stress? HE SLEEPS???8:55am the phone rings and is for us. I go back to the phone and it was Dr. Frim. All was good. Lindsay was sedated in a very deep state of sleep with LOTS of anesthesia meds on board and she was face down positioned for surgery. I specifically remember asking. "So, NO reactions then?" to which Dr. Frim replies, "Not yet, at least". To which I replied, "My you are quite witty today!" He tells me to go and have breakfast that it would be a long surgery and that I needed to take care of me. He told me that at any point that I wanted an update that all I had to do was have Ronie call back to the OR. He said she knew we were given the OK and she would assist us anyway possible.
9:30am we decided to head to DCAM and get coffee/soda. Ronie gave us a pager and he told her exactly where we would be. We sat in DCAM cafeteria for over an hour. Around 10:40 we headed back to Comer. Mom and Darren needed some fresh air so we went to the ER enterance. It was cold and *I* do not need "Fresh Air" so I waiting in the warm ER waiting room. Our friends, Amanda and Tommi, arrived for Amanda's MRI appointment. We chatted and walked to the MRI waiting room. We met up with another mom whose son is a Frim patient also and we met when we were in playroom in December. (We were all here at the same time) By 11:05am we were back in the OR waiting room.
11:10am Phone Rings-It is for us. I get the phone and it is Dr. Frim. He tells us that part one of her surgery is completed and they have flipped her to start parts 2 and 3. Still no reaction and she is wonderfully stable. He told me that the needle used to pierce the dura and advance the shunt tubing was 10-12cm long and when he pierced her dura CSF filled the needle and shot out the other end. He said that he drained a large amount of fluid. He said he would be in the OR until around 1pm.
11:30am We decide that we should eat. We headed back to DCAM and Ronie gave us the pager back. We had lunch and tinkered around. Finally at 12:30 I said we had to get back to the surgery waiting room. When we got back there within minutes we had another call from Dr. Frim. They were done and were closing and it would be another 30 minutes or so.
12:40pm Tommi comes to visit while Amanda is in MRI. Amanda has made a bear for Lindsay. (A very cute bear, btw)
1:05pm Frim came out to talk to us. Lindsay's surgery was boring :). He decided to check her pressure before he connected the tubing and her pressure started at 29 and jumped to 39. That was not including the large amount of CSF he drained before. I about had a coronary when he said to us, "I have a confession to make". Earlier in February the U of C had to do some major layoffs due to the current economic status. On of Dr. Frim's colleagues was very down during this time and so Dr. Frim was telling her it could be worse. He had a little girl emailing him and begging for surgery. So he shared Lindsay's emails with his colleague. His colleague just happens to be the COO of the Medical Center. She was so taken with Lindsay's emails that she wanted to meet her while she was in the hospital. He asked us if we would mind and we told him that she was more than welcome to come and meet Lindsay. After about a 20 minute chat we decided it was time to head to the PICU to find Lindsay. When I arrived at the PICU I informed the ward clerk that we were Lindsay's parents and wanted to see her ASAP. I got the "We are stablizing her" speech and I told the clerk, "Yeah, I am a nurse and I want to see her ASAP!"
1:30pm We are in PICU waiting. Anne from Child Life comes to get us and we go to see Lindsay. This is what we are greated by:
And this:
And this:
The computer system was down so the only meds she could have was morphine. Dr. Frim and the "power team" (The NPs) stopped by to check on her. Lindsay was holding his hand telling him how badly she felt and they were pushing the morphine. After they left Lindsay rested for a bit then woke up again looking a little like this:
She informed us that she felt horrible and she know that Dr. Frim did something wrong during surgery. We all could not help but laugh. Fresh little girl she is. ;) Dr. K (Anesthesiologist) came in Lindsay informed her that she felt horrible and that Dr. Frim had to have done something wrong during surgery. Dr K could not HELP but find this funny and wasted no time in tell Dr. Frim. Gramma makes it all right in the world...
Around 6:30pm:
Around 9pm. Lindsay has started to run a fever and her O2 Sats are low. The reason for the purple lips...Purple Popsicle...
4:49 AM. Lindsay on oxygen to keep her levels up
(to be continued)
Saturday, March 07, 2009
Lindsay's Surgery
I will blog about her surgery later. She was so funny and gave Neurosurgery so much grief that I do have to share.
Wednesday, February 18, 2009
The kids...
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!!! :)
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!!! :)
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.
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