I will never understand. Fayeth refuses to sleep in her princess bed, though we cannot take it down and Hannah refuses to sleep in her trundle. They want to sleep together.
Tuesday, February 26, 2008
Why everyone has their own bed...
I will never understand. Fayeth refuses to sleep in her princess bed, though we cannot take it down and Hannah refuses to sleep in her trundle. They want to sleep together.
Saturday, February 23, 2008
Low Pressure...
We have been dealing with low pressure symptoms here. The only thing worse than HIGH pressure is LOW pressure. Friday around 5:30pm Gabe started crying and grabbing his forehead. By 6pm he could only lay flat to get relief. The minute he stood upright he became nauseated, dizzy, blurry vision and had eye pain. By 8:20pm, I called Darren and we discussed it and we decided that we needed to place a call to neurosurgery.
Finally, after a 2nd page, I spoke to the (dumb ass stupid ns resident that I do not like...there are 2) and our options were. 1) increase his shunt setting or 2) drive all the way to Comer ER and get a shunt x-ray to make sure that all the shunt connections are connected and not leaking. It was almost 9:30pm and Gabe could not stand/sit upright for 3 minutes and you want me to drive to the ER 1.5 hours away? I asked him what to increase his setting to and the resident said that he did not know. Then after a long pregnant silence he said, I will call and talk to Dr. Frim about that.
9:50pm and one of our favorite residents, Dr. Steve, calls me back and we discuss what we think is going on. He had me check Gabe's back and incisions for signs of a CSF leak. There was no bogginess or squishiness so we ruled out a leak from the spine or the connectors. The biggest concern with Gabe is that he is SOOOO sensitive to high pressure. What some people can function at, he cannot. So we have to extremely slowly raise his pressure. We were to take him from a setting of "3" to a setting of "4". Leave him there and recheck him in a couple of hours. Do this throughout the night, call with an update in the AM. If we cannot get him comfortable or upright by Monday then we were to bring him into the ER. After resetting him to "4" Gabe started sleeping very well. We opted to NOT mess with his shunt any more during the night as he wasso hard to rouse and we wanted him to rest. This morning he still had pain so we reprogrammed him to "5". At Noon we programmed him to "6". He started doing well and while he still had a headache while upright, he was ABLE to be upright. Which was a HUGE improvement. He was doing well until 4:30pm when the headaches started in and he needed to constantly lie down. That is where we are at now. I will most likely either 1) call the NP on call tomorrow or email Dr. Frim tonight. As long as he is down he is little to no pain. He can get up, but then his pain increases. Sometimes it is a few minutes before the pain starts...other times it is an hour. It makes no sense.
Finally, after a 2nd page, I spoke to the (dumb ass stupid ns resident that I do not like...there are 2) and our options were. 1) increase his shunt setting or 2) drive all the way to Comer ER and get a shunt x-ray to make sure that all the shunt connections are connected and not leaking. It was almost 9:30pm and Gabe could not stand/sit upright for 3 minutes and you want me to drive to the ER 1.5 hours away? I asked him what to increase his setting to and the resident said that he did not know. Then after a long pregnant silence he said, I will call and talk to Dr. Frim about that.
9:50pm and one of our favorite residents, Dr. Steve, calls me back and we discuss what we think is going on. He had me check Gabe's back and incisions for signs of a CSF leak. There was no bogginess or squishiness so we ruled out a leak from the spine or the connectors. The biggest concern with Gabe is that he is SOOOO sensitive to high pressure. What some people can function at, he cannot. So we have to extremely slowly raise his pressure. We were to take him from a setting of "3" to a setting of "4". Leave him there and recheck him in a couple of hours. Do this throughout the night, call with an update in the AM. If we cannot get him comfortable or upright by Monday then we were to bring him into the ER. After resetting him to "4" Gabe started sleeping very well. We opted to NOT mess with his shunt any more during the night as he wasso hard to rouse and we wanted him to rest. This morning he still had pain so we reprogrammed him to "5". At Noon we programmed him to "6". He started doing well and while he still had a headache while upright, he was ABLE to be upright. Which was a HUGE improvement. He was doing well until 4:30pm when the headaches started in and he needed to constantly lie down. That is where we are at now. I will most likely either 1) call the NP on call tomorrow or email Dr. Frim tonight. As long as he is down he is little to no pain. He can get up, but then his pain increases. Sometimes it is a few minutes before the pain starts...other times it is an hour. It makes no sense.
Mommy I have pain...I have to lie down.
His Side.
Friday, February 22, 2008
Shunt Revision #1
We arrived at the RMH on Tuesday. I had been corresponding by email with another mom who has twins. Not just 1 set, but 2! :) Cindy and Riley and I had been emailing for a while re: chiari. Riley had her decompression surgery on Valentine's Day. I have to say that I do not know how many times I told Cindy how awesome Riley looked. Gabe never looked that good that soon after surgery. We actually have another friend, Kaci, in common. Kaci is a chiari/cranio mom.
Through Cindy I met Kristen and Nicholas. (Which after I get permission I will link her blog) Kristen used Angel Flights to fly in from OK. I will admit that I was in stitches when she was letting me about her flight. Something along the lines of, "Well, I could feel the air coming through the plane on my arm". BRAVE BRAVE BRAVE woman. Nicholas was diagnosed with Chiari 5 years ago and he did not have surgery. His symptoms are getting progressively worse. Nicholas was having a MRI on Wednesday.
We all sat together and had dinner, which was yummy and sponsored by Southwest Airlines. (Thank you southwest) We were talking about the things that Chiari parents talk about. Our friend, Beth (Gabby's mom-carepages: FAILUREISNOTANOPTION ) came over and we were talking about Gaby. I felt guilty as we had to keep saying to Cindy and Kristen, "Our kids are not the norm. They are complicated cases".
Gabe and Riley played so well together. I wish that I had my camera with me when they were playing. Nicholas is such a sweet well behaved young man. Kristen if you are reading this, Nicholas is awesome.
Gabe had a LOT of anxiety Tuesday night. He paced the 33,000sqft house a lot.
As you can tell, he was not too happy before bedtime.
Post op in his room. NOT a happy man. Eyes are swollen, face is swollen, chest is hurting and DAMMIT where is my dinner.
Gabe 22 hours post op. Waiting for last dose of antibiotics and for Amanda to come back from clinic to discharge us.
Surgical incision. To replace the portion of the shunt they did, they have to make an incision at the top of his side and one at his tummy level. (He already had these from shunt placement) However, they pull 10cm for tubing out of his tummy and pull the shunt hardware up through the top incision. They then remove what they need to and the PULL the hardware back down into his body from the tubing at the bottom of the incision. They then push the 10cm of tubing back into his tummy and VOILA they are done. However, while the surgery sounds simple, and it is, they have to dissect muscle and scar tissue to pull this hardware out so you are tender on your belly and side.
This is the component part that they removed. It is 1.75 inches from tip to tip.
Close Up.
Through Cindy I met Kristen and Nicholas. (Which after I get permission I will link her blog) Kristen used Angel Flights to fly in from OK. I will admit that I was in stitches when she was letting me about her flight. Something along the lines of, "Well, I could feel the air coming through the plane on my arm". BRAVE BRAVE BRAVE woman. Nicholas was diagnosed with Chiari 5 years ago and he did not have surgery. His symptoms are getting progressively worse. Nicholas was having a MRI on Wednesday.
We all sat together and had dinner, which was yummy and sponsored by Southwest Airlines. (Thank you southwest) We were talking about the things that Chiari parents talk about. Our friend, Beth (Gabby's mom-carepages: FAILUREISNOTANOPTION ) came over and we were talking about Gaby. I felt guilty as we had to keep saying to Cindy and Kristen, "Our kids are not the norm. They are complicated cases".
Gabe and Riley played so well together. I wish that I had my camera with me when they were playing. Nicholas is such a sweet well behaved young man. Kristen if you are reading this, Nicholas is awesome.
Gabe had a LOT of anxiety Tuesday night. He paced the 33,000sqft house a lot.
As you can tell, he was not too happy before bedtime. Gabe was very kind Wednesday morning and told me that I could have breakfast before we went to the hospital, that we would play in the playroom. :) Thank Goodness he did. We took the shuttle to the hospital and got there early. We went to check on Kristen as she was waiting for Nicholas to get out of his MRI. By the time we got there she looked very worried and I wanted to give her a big hug. His MRI was taking longer than they anticipated which of course makes moms worry more. Kristen got called back right when we needed to head to surgery waiting.
We arrived at surgery waiting (early of course) and filled out our paperwork. And we waited...and waited...and waited.... Surgeries on the kids before us were taking longer than anticipated and that does not bode well for us. Call us superstitious, but still we like the cases before us to go smoothly. Then we had to wait for anesthesia. We were not taken back until 1:30pm. We did get to see our favorite med student, Kim, who wrote an article/did a study on Gabe.
We arrived at surgery waiting (early of course) and filled out our paperwork. And we waited...and waited...and waited.... Surgeries on the kids before us were taking longer than anticipated and that does not bode well for us. Call us superstitious, but still we like the cases before us to go smoothly. Then we had to wait for anesthesia. We were not taken back until 1:30pm. We did get to see our favorite med student, Kim, who wrote an article/did a study on Gabe.
Post op in his room. NOT a happy man. Eyes are swollen, face is swollen, chest is hurting and DAMMIT where is my dinner. 
Gabe 22 hours post op. Waiting for last dose of antibiotics and for Amanda to come back from clinic to discharge us. 
Surgical incision. To replace the portion of the shunt they did, they have to make an incision at the top of his side and one at his tummy level. (He already had these from shunt placement) However, they pull 10cm for tubing out of his tummy and pull the shunt hardware up through the top incision. They then remove what they need to and the PULL the hardware back down into his body from the tubing at the bottom of the incision. They then push the 10cm of tubing back into his tummy and VOILA they are done. However, while the surgery sounds simple, and it is, they have to dissect muscle and scar tissue to pull this hardware out so you are tender on your belly and side. 
This is the component part that they removed. It is 1.75 inches from tip to tip.
Close Up. Tuesday, February 12, 2008
Our bird feeder...
Friday at the Daisy Girl Scout meeting the girls earned a petal. They earned their ROSE colored petal, "Make the World a Better Place". The girls made bird feeders out of recycled materials.
They took pine cones and applied peanut butter to the pine cone. They then rolled the pine cone in bird seed and attached yarn to the pine cone. Voila, there is your bird feeder. We had Lindsay hang hers on our back deck. I figured that we would not get any birds but more likely our squirrels would come and feast.
She has waited and waited. And waited some more. This morning she told me, "Nothing is going to eat at my bird feeder". Just a little while ago I saw movement on our deck and I called Lindsay up. This is what was on our deck.
All is now right in the world. :)
They took pine cones and applied peanut butter to the pine cone. They then rolled the pine cone in bird seed and attached yarn to the pine cone. Voila, there is your bird feeder. We had Lindsay hang hers on our back deck. I figured that we would not get any birds but more likely our squirrels would come and feast.
She has waited and waited. And waited some more. This morning she told me, "Nothing is going to eat at my bird feeder". Just a little while ago I saw movement on our deck and I called Lindsay up. This is what was on our deck.
All is now right in the world. :)
Lindsay Saves the Day.
I have been without a working dryer for 2 weeks. All that having a working dryer required was my husband bringing down the old one, and my step dad coming over and us rewiring the breaker box for an electric dryer instead of gas, and putting a outlet in. Seriously, it was not that hard. Plus my Pops is an electrician. Well okay, an electrician with very poor vision due to histoplasmosis.
Sunday night my husband (Who I had been asking for weeks to move the dryer) came home from work (and he was well prepared for the fact that we were moving the dryer) in a pissy mood. I could tell that he did not want to move the dryer from the garage to the utility room, but I gave him THE LOOK and he instantly knew that he had 2 choices...Move the dryer or death. After 2 weeks of having everything up all over my utility room, all 3 bathrooms and anything else that would hold wet items I had had it. The first thing out of his mouth was, "Have you seen how messy the garage is, it will take an hour to clear a path". No sweetheart, it won't. I already cleared the path. After he realized that (the 5 minutes it took to "make a path") he was good to go.
Monday morning Pops, My mom, my nephew Eli, and niece Leila came over. Pops, Mom and I moved breakers in the breaker box to make room for my double breaker that is needed for the dryer. Wires were run, outlets wired (ME :) ) and VOILA! I had a working dryer again. WOOHOO!!!
During that time though, my neighbor Miss Glenna came over. Miss Glenna and Mr Phil are WONDERFUL neighbors. She looks out for my kids and I look out for her husband. Mr. Phil has Alzheimer's. Because Mr. Phil kept wandering off and lying in people's yards (a story for another day) Miss Glenna had to put deadbolt key only locks on her house doors so she could atleast get some sleep at night.
Yesterday, she went through her garage to walk over to the neighbors. She exited through her garage door. She did not lock her door from the garage to the house because when Mr. Phil goes into the garage he has no clue how to open the garage door. Well, in the few minutes she was gone, her temperamental garage door refused to open. (It must have been protesting the frigid weather that we are having) She came to my house to "Borrow a small child". I got Lindsay dressed and off she went with Miss Glenna. Miss Glenna leaves her sliding glass door unlocked during the day because of the cats. However she has a metal bar in the door so that Mr. Phil cannot get out of the door. It opens enough to let the cats in, but not him out. (It opens enough for Glenna to get her head through the door) So Lindsay went with Glenna, slide through her sliding glass door and removed the metal bar.
Lindsay was Miss Glenna's hero. Glenna has said that she will probably take her keys with her from now on, but with the garage door never acting up like that before she did not see the need. Lindsay is very excited to be Miss Glenna's hero. :)
All in all, a pretty good day. A working washer and a daughter you brightened someone elses day. :)
Sunday night my husband (Who I had been asking for weeks to move the dryer) came home from work (and he was well prepared for the fact that we were moving the dryer) in a pissy mood. I could tell that he did not want to move the dryer from the garage to the utility room, but I gave him THE LOOK and he instantly knew that he had 2 choices...Move the dryer or death. After 2 weeks of having everything up all over my utility room, all 3 bathrooms and anything else that would hold wet items I had had it. The first thing out of his mouth was, "Have you seen how messy the garage is, it will take an hour to clear a path". No sweetheart, it won't. I already cleared the path. After he realized that (the 5 minutes it took to "make a path") he was good to go.
Monday morning Pops, My mom, my nephew Eli, and niece Leila came over. Pops, Mom and I moved breakers in the breaker box to make room for my double breaker that is needed for the dryer. Wires were run, outlets wired (ME :) ) and VOILA! I had a working dryer again. WOOHOO!!!
During that time though, my neighbor Miss Glenna came over. Miss Glenna and Mr Phil are WONDERFUL neighbors. She looks out for my kids and I look out for her husband. Mr. Phil has Alzheimer's. Because Mr. Phil kept wandering off and lying in people's yards (a story for another day) Miss Glenna had to put deadbolt key only locks on her house doors so she could atleast get some sleep at night.
Yesterday, she went through her garage to walk over to the neighbors. She exited through her garage door. She did not lock her door from the garage to the house because when Mr. Phil goes into the garage he has no clue how to open the garage door. Well, in the few minutes she was gone, her temperamental garage door refused to open. (It must have been protesting the frigid weather that we are having) She came to my house to "Borrow a small child". I got Lindsay dressed and off she went with Miss Glenna. Miss Glenna leaves her sliding glass door unlocked during the day because of the cats. However she has a metal bar in the door so that Mr. Phil cannot get out of the door. It opens enough to let the cats in, but not him out. (It opens enough for Glenna to get her head through the door) So Lindsay went with Glenna, slide through her sliding glass door and removed the metal bar.
Lindsay was Miss Glenna's hero. Glenna has said that she will probably take her keys with her from now on, but with the garage door never acting up like that before she did not see the need. Lindsay is very excited to be Miss Glenna's hero. :)
All in all, a pretty good day. A working washer and a daughter you brightened someone elses day. :)
Wednesday, February 06, 2008
Obama, McCain and Hillary Hen...
Since Monday Gabe's pain has spiked. His brain is (again) no longer tolerating the increased pressure. Darren and I have noticed that he tends to have a harder time readjusting to the elevated pressure after every lumbar puncture. An email is going into the neurosurgeon tonight. :)
Last night he was up from 9pm-1am. Darren and I were listening/watching the Super Tuesday results. Not that our wonderful state of Indiana voted yesterday. Since my Beloved John Edwards dropped out of the race, I have been a McCain supporter because he is the next best thing to having a Democrat in office. The other 2 Democrats I will not vote for. So, Darren and I were discussing the results and the what not. Gabe listened aptly and you could tell he was just soaking it all up.
This morning Gabe, Lindsay and Hannah came out to the Living room and turned on the TV. Fox News or something was on and they were talking about Super Tuesday results. I heard Gabe telling the girls, "Mommy is a McCain Support because John Edwards is no longer in the race. She is not a fan of Barack Obama and she is ABSOLUTELY NOT a supporter of Hillary Hen!!!" You could just hear the conviction in his voice. *I* about peed my pants as I corrected him that Hillary Hen is in fact Hillary Clinton.
What a sweet little man!
Last night he was up from 9pm-1am. Darren and I were listening/watching the Super Tuesday results. Not that our wonderful state of Indiana voted yesterday. Since my Beloved John Edwards dropped out of the race, I have been a McCain supporter because he is the next best thing to having a Democrat in office. The other 2 Democrats I will not vote for. So, Darren and I were discussing the results and the what not. Gabe listened aptly and you could tell he was just soaking it all up.
This morning Gabe, Lindsay and Hannah came out to the Living room and turned on the TV. Fox News or something was on and they were talking about Super Tuesday results. I heard Gabe telling the girls, "Mommy is a McCain Support because John Edwards is no longer in the race. She is not a fan of Barack Obama and she is ABSOLUTELY NOT a supporter of Hillary Hen!!!" You could just hear the conviction in his voice. *I* about peed my pants as I corrected him that Hillary Hen is in fact Hillary Clinton.
What a sweet little man!
Subscribe to:
Posts (Atom)
