I am just so mad and frustrated. 9 days ago it was identified by our local hospital radiologist that took an xray of Gabe that his shunt was kinked. That means his shunt in non-functioning. Frim has yet to look at our films and according to his out of office message he is gone 7/3-7/17. I am SO angry. SO frustrated. We keep Gabe out of the ER as long as is possible. I do not like to be in the hospital any longer than necessary and now I have to try to get through the next 2.5 weeks until Frim gets back.
Frim has had our xrays since Thursday June 26th. It is frustrating to know that he could not look at the films and get back to us. He KNOWS that there could be a problem with Gabe's shunt. *SIGH* I am so angry!
I think I might need to look for a new neurosurgeon...*SIGH*
Showing posts with label shunts. Show all posts
Showing posts with label shunts. Show all posts
Thursday, July 03, 2008
Friday, June 27, 2008
Catching up...
Life has been a bit busy around here. Imagine that. ;)
Tuesday we went to the peds office to have Fayeth's laceration checked. It is healing well. The edges look to be back together well and she should heal nicely. Of course she will have a bit of a scar, but you know, that happens. I also asked Dr A if she would order a shunt xray because Gabe was having some pretty bad shunt/pressure/chiari/dysautonomia symptoms. I wanted to make sure that his shunt had not reprogrammed itself. That is always a concern anytime you go out into public. magnetic doors, items in a store that use magnets. You never know when you will come across a magnet that will be strong enough to reset the shunt.
I had to go into Chicago that night so she was good about ordering this for us. When we got home I checked his films and his programmable valve was set at 3 which is where he is suppose to be. YEAH! However the tubing in his back appeared to be kinked. Another chiari mom thought the same thing. While in Chicago I did not see anyone at the hospital that could help us.
Wednesday the prelim xray result came in with, "The shunt tubing is noted to overlie itself within the paraspinal region". A very fancy way of saying that his tubing is kinked. Frim was not impressed with this and said that he needed to see the films. I got the address to mail them and then decided to drop them off Thursday at Clinic and then go to the Museum.
I heard back from Frim last night that we will talk when he gets a chance to look at the flims.
So long story short, Gabe currently does not have a functioning shunt. So that is the reason for all the increased pain issues, ect. On the occasions that he is able to reposition himself and it does the trip to temporarily unkink the tubing he immediately low pressures because he cannot handle the rapid decrease of pressure in his head. So, now we wait. I am going to be aggressive with this because I want it fixed. I am in hopes that if we get the shunt fixed that he can come off the methadone. In my opinion the methadone is a bandaid and I am tired of using a bandaid to cover the problem.
Tuesday we went to the peds office to have Fayeth's laceration checked. It is healing well. The edges look to be back together well and she should heal nicely. Of course she will have a bit of a scar, but you know, that happens. I also asked Dr A if she would order a shunt xray because Gabe was having some pretty bad shunt/pressure/chiari/dysautonomia symptoms. I wanted to make sure that his shunt had not reprogrammed itself. That is always a concern anytime you go out into public. magnetic doors, items in a store that use magnets. You never know when you will come across a magnet that will be strong enough to reset the shunt.
I had to go into Chicago that night so she was good about ordering this for us. When we got home I checked his films and his programmable valve was set at 3 which is where he is suppose to be. YEAH! However the tubing in his back appeared to be kinked. Another chiari mom thought the same thing. While in Chicago I did not see anyone at the hospital that could help us.
Wednesday the prelim xray result came in with, "The shunt tubing is noted to overlie itself within the paraspinal region". A very fancy way of saying that his tubing is kinked. Frim was not impressed with this and said that he needed to see the films. I got the address to mail them and then decided to drop them off Thursday at Clinic and then go to the Museum.
I heard back from Frim last night that we will talk when he gets a chance to look at the flims.
So long story short, Gabe currently does not have a functioning shunt. So that is the reason for all the increased pain issues, ect. On the occasions that he is able to reposition himself and it does the trip to temporarily unkink the tubing he immediately low pressures because he cannot handle the rapid decrease of pressure in his head. So, now we wait. I am going to be aggressive with this because I want it fixed. I am in hopes that if we get the shunt fixed that he can come off the methadone. In my opinion the methadone is a bandaid and I am tired of using a bandaid to cover the problem.
Friday, May 09, 2008
Vacation...
We had a horrid appointment at Clinic last week (5/1). I did not blog about it because I would have spent more time explaining what was going on and why things did not go a certain way, then I would have just venting. Least to say Gabe did not get a shunt X-ray or Tap. We changed his meds to a routine dose of Methadone and use the tylenol PRN.
Gabe continued to downslide. Saturday (5/3) he was pretty miserable but it seemed like his pain had plateaued. He was not getting the moments of beyond horrific pain where he would scream that he wanted to die. So that is always a plus and usually a sign that we have leveled out. By leveling out I do not mean no pain, I mean we have met his new "normal" pain.
Sunday he was a brave little trooper and made it through the day well. Lots of pain, but the methadone seemed to help take the edge off. We had dinner with Family for Fayeth's 3rd birthday.
Monday he went to dance. I left the studio to grab a few things for vacation. When I got back he was doing the funky eye thing that he does when his head/eyes are hurting. Monday I had a meeting and my mom was keeping them overnight. She medicated him before I left.
Tuesday we went to pick them up for vacation (of course after we voted) and when we arrived he was whiny that he had pain. My mom gave him his methadone and we could tell that Gabe was "off". Loaded everyone into the car and began our trip to Wisconsin Dells. Gabe immediately fell asleep. Methadone usually does not make him do that. This type of sleep is normally the "I feel so bad I am just going to check out sleep". He slept all the way to Chicago. He woke up to go into the Oasis so we could do a quick potty break and purchase an I-Pass. He dozed off and on, ate well at lunch and by the time we got to the Kalahari he LOOKED miserable. I figured it was just from being in the car for so long. Our 4.5 hour trip took 6 hours. TRAFFIC.
When we got there we took our stuff up to our rooms, medicated the kids (Methadone for the Boy and Motrin for the girls and diamox of Lindsay). Since Gabe was "off" Darren and I decided that he would go to the grocery store and we would rest. Gabe did not complain about that at all.
This is what the little man did while Daddy was at the grocery store. I was able to get a few more pics of the kids.
Gabe was a trooper and got up to take pics. He even put a happy face on. I spoke with our friend Rachel J (Riley and Alex's Mommy) and she told me to get him into the water that it will help his pressure. We headed down to the water park and had fun. I HIGHLY recommend the Kalahari. Thank you Nicole N. for the recommendation. We were having a great time. We went over to the kiddie area for Fayeth and the kids were playing. Gabe was getting a little argumentative which means that he has some intense pain, but we were letting him work through it, he can be good about telling us when enough is enough.
He walked out of the kiddie section and plops onto the sidewalk. I ask him what is wrong and he tells me that his head is killing him. Darren and Gabe went to sit in the chaisse lounge chairs and I continued to watch the girls. Gabe got up and sort of staggered around toward the front of the kiddie water area. I walked over to him for fear that he would fall and he proceeded to empty his stomach contents all over the side walk. Darren took him back to the chaisse and he again threw up. By now he is in hysterics from pain. Grabbing his face and eyes, wants to go home. I told him I would take him back to the room and he said no HOME! I get him a garbage bag from the janitor and we walk back to our rooms. That was the only issue, we were way out in the Sands Building so we had quite a haul to our room. Not bad, except when you have a little one in severe pain.
We get back to our room where Gabe continues to puke. I paged neurosurgery to see what they have to say. Paula (NP) tells me that she is going to call Frim who is in surgery and get back to me. By now Gabe is in bed holding onto his garbage can. I gave him a Tigan. (The one and only I had with me) Paula calls back and says he needs to be evaulated either in WI or at UCH. ARGH. Start calling around to local ERs. Problem is I need to find a hospital that is capable to running diagnostic tests for shunt malfunctions and one that takes our insurance. Well, low and behold I find a hospital who has an ER doc whose mom has Chiari and the ER doc on staff is a pediatric specialist in neurology (i believe). Of course my insurance does not cover them. I call my insurance and ask which hospitals do and what is my deductible for Out of Network. She gives me the names of the Hospitals that my insurance covers and my deductible is $7500 our of network. We have already met our out of pocket so that is just not acceptable. I call the 1 hospital that takes our insurance (We have a HUGE NAME insurance. I am not sure what was completely up with no one taking them. I heard contract issues) and they tell us that they cannot handle Gabe and they will transfer him into Madison to Children's. Who does NOT take our insurance. YIKES! No thank you.
By now he is resting in bed Darren and I decide since it is so late that we will get up at 4am and see how he is doing and head out from there to beat the Chicago traffic. At 2:15am he is up crying from pain. Medicated him. 4am he is denying pain. You can tell in his face he has it we decide screw it, if he is going to lie we will gamble.
Thursday many meltdowns from pain ensued. By Wednesday night he was FLAT in bed refusing to eat. Though we got a slice of pizza down him and a glass of juice. We had placed an email to Frim earlier in the day and he replied back for us to call Kelly in the AM to see if they could fit us in.
Thursday morning we are on the road by 7am. Called Kelly at 9am at clinic and she tells us to come in and see the NPs when we get there.
We get there and they order a shunt series xray. We head to radiology, get the x-ray done and go back to clinic. His shunt is set where he should be so that is great. Based on his symptoms Amanda decides to tap his shunt. His pressure was about where it should be, but she had a hard time drawing off fluid at first. Finally she got fluid and she sent some to lab to check and see if chemical meningitis. Gabe had some issues post tap with low pressure but as soon as we got to the car he felt awesome. Since then he has been pain free. Yes I said PAIN FREE!!!! Well he will tell you that his back hurts but it is less than a 1 so he is pain free. :)
Lets hope that it was just a clog and that by tapping him they were able to clear the tubing and he will be better now. :)
Gabe continued to downslide. Saturday (5/3) he was pretty miserable but it seemed like his pain had plateaued. He was not getting the moments of beyond horrific pain where he would scream that he wanted to die. So that is always a plus and usually a sign that we have leveled out. By leveling out I do not mean no pain, I mean we have met his new "normal" pain.
Sunday he was a brave little trooper and made it through the day well. Lots of pain, but the methadone seemed to help take the edge off. We had dinner with Family for Fayeth's 3rd birthday.
Monday he went to dance. I left the studio to grab a few things for vacation. When I got back he was doing the funky eye thing that he does when his head/eyes are hurting. Monday I had a meeting and my mom was keeping them overnight. She medicated him before I left.
Tuesday we went to pick them up for vacation (of course after we voted) and when we arrived he was whiny that he had pain. My mom gave him his methadone and we could tell that Gabe was "off". Loaded everyone into the car and began our trip to Wisconsin Dells. Gabe immediately fell asleep. Methadone usually does not make him do that. This type of sleep is normally the "I feel so bad I am just going to check out sleep". He slept all the way to Chicago. He woke up to go into the Oasis so we could do a quick potty break and purchase an I-Pass. He dozed off and on, ate well at lunch and by the time we got to the Kalahari he LOOKED miserable. I figured it was just from being in the car for so long. Our 4.5 hour trip took 6 hours. TRAFFIC.
When we got there we took our stuff up to our rooms, medicated the kids (Methadone for the Boy and Motrin for the girls and diamox of Lindsay). Since Gabe was "off" Darren and I decided that he would go to the grocery store and we would rest. Gabe did not complain about that at all.
This is what the little man did while Daddy was at the grocery store. I was able to get a few more pics of the kids.
Gabe was a trooper and got up to take pics. He even put a happy face on. I spoke with our friend Rachel J (Riley and Alex's Mommy) and she told me to get him into the water that it will help his pressure. We headed down to the water park and had fun. I HIGHLY recommend the Kalahari. Thank you Nicole N. for the recommendation. We were having a great time. We went over to the kiddie area for Fayeth and the kids were playing. Gabe was getting a little argumentative which means that he has some intense pain, but we were letting him work through it, he can be good about telling us when enough is enough.
He walked out of the kiddie section and plops onto the sidewalk. I ask him what is wrong and he tells me that his head is killing him. Darren and Gabe went to sit in the chaisse lounge chairs and I continued to watch the girls. Gabe got up and sort of staggered around toward the front of the kiddie water area. I walked over to him for fear that he would fall and he proceeded to empty his stomach contents all over the side walk. Darren took him back to the chaisse and he again threw up. By now he is in hysterics from pain. Grabbing his face and eyes, wants to go home. I told him I would take him back to the room and he said no HOME! I get him a garbage bag from the janitor and we walk back to our rooms. That was the only issue, we were way out in the Sands Building so we had quite a haul to our room. Not bad, except when you have a little one in severe pain.
We get back to our room where Gabe continues to puke. I paged neurosurgery to see what they have to say. Paula (NP) tells me that she is going to call Frim who is in surgery and get back to me. By now Gabe is in bed holding onto his garbage can. I gave him a Tigan. (The one and only I had with me) Paula calls back and says he needs to be evaulated either in WI or at UCH. ARGH. Start calling around to local ERs. Problem is I need to find a hospital that is capable to running diagnostic tests for shunt malfunctions and one that takes our insurance. Well, low and behold I find a hospital who has an ER doc whose mom has Chiari and the ER doc on staff is a pediatric specialist in neurology (i believe). Of course my insurance does not cover them. I call my insurance and ask which hospitals do and what is my deductible for Out of Network. She gives me the names of the Hospitals that my insurance covers and my deductible is $7500 our of network. We have already met our out of pocket so that is just not acceptable. I call the 1 hospital that takes our insurance (We have a HUGE NAME insurance. I am not sure what was completely up with no one taking them. I heard contract issues) and they tell us that they cannot handle Gabe and they will transfer him into Madison to Children's. Who does NOT take our insurance. YIKES! No thank you.
By now he is resting in bed Darren and I decide since it is so late that we will get up at 4am and see how he is doing and head out from there to beat the Chicago traffic. At 2:15am he is up crying from pain. Medicated him. 4am he is denying pain. You can tell in his face he has it we decide screw it, if he is going to lie we will gamble.
Thursday many meltdowns from pain ensued. By Wednesday night he was FLAT in bed refusing to eat. Though we got a slice of pizza down him and a glass of juice. We had placed an email to Frim earlier in the day and he replied back for us to call Kelly in the AM to see if they could fit us in.
Thursday morning we are on the road by 7am. Called Kelly at 9am at clinic and she tells us to come in and see the NPs when we get there.
We get there and they order a shunt series xray. We head to radiology, get the x-ray done and go back to clinic. His shunt is set where he should be so that is great. Based on his symptoms Amanda decides to tap his shunt. His pressure was about where it should be, but she had a hard time drawing off fluid at first. Finally she got fluid and she sent some to lab to check and see if chemical meningitis. Gabe had some issues post tap with low pressure but as soon as we got to the car he felt awesome. Since then he has been pain free. Yes I said PAIN FREE!!!! Well he will tell you that his back hurts but it is less than a 1 so he is pain free. :)
Lets hope that it was just a clog and that by tapping him they were able to clear the tubing and he will be better now. :)
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