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.
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