So...on Thursday afternoon I received a phone call from Shelby's GI's fabulous nurse. She said it could be seen on Sunday's (Immediate Care) and Wednesday's (ER) x-rays that Shelby did have a large amount of stool in her. A CT was NOT necessary! All that exposure to that extra radiation was NOT necessary! Makes me so mad! Anyway, the nurse recommended a 2-day clean-out using Miralax. So, here we are after the clean-out with reduced tummy pain, but wondering how "clean" she actually got. Her Levsin is still a larger dose than usual and x-lax chocolate (she loved it) has been added to her nighttime meds. We'll see what that brings in the a.m. We'll follow-up with her GI this week to talk about a new game plan to keep her even more "regular." Poor kid. This on top of everything else.
Saturday, October 23, 2010
Wednesday, October 20, 2010
Shelby in ER
4:47 p.m.
We've been here a while now this afternoon and still really don't know anything yet. For about a week she's had intermittent tummy pain that now has gotten worse. She had an abdominal x-ray at Immediate Care Sunday night that showed some "backed up" stool, but we did a clean out on Monday and thought all was good. She made it about 1/2 a day at school today. We're waiting right now on lab and x-ray results. Prayers please.
6:44 p.m.
All labs have come back as "Shelby's normal" except her Alkaline Phosphatase is elevated (and it is normally NOT). A CT scan with oral and IV contrast has been ordered. Her tummy pain keeps coming and going.
10:09
CT done. Waiting for results....Doctor just came in. CT looked fine. Showed a lot of stool. They are giving her a dose of Levsin (she's already on that; they're just giving her a larger dose) and sending us home. We are to follow-up with her GI doc in the a.m.
We've been here a while now this afternoon and still really don't know anything yet. For about a week she's had intermittent tummy pain that now has gotten worse. She had an abdominal x-ray at Immediate Care Sunday night that showed some "backed up" stool, but we did a clean out on Monday and thought all was good. She made it about 1/2 a day at school today. We're waiting right now on lab and x-ray results. Prayers please.
6:44 p.m.
All labs have come back as "Shelby's normal" except her Alkaline Phosphatase is elevated (and it is normally NOT). A CT scan with oral and IV contrast has been ordered. Her tummy pain keeps coming and going.
10:09
CT done. Waiting for results....Doctor just came in. CT looked fine. Showed a lot of stool. They are giving her a dose of Levsin (she's already on that; they're just giving her a larger dose) and sending us home. We are to follow-up with her GI doc in the a.m.
Friday, October 08, 2010
Meeting with the surgeon
First of all, let me just say for the record I'm NO fan of my sweet Shelby having surgery. NOT. AT. ALL. But, after spending 2 hours talking to Dr. Superina I do understand why the surgery has been recommended. Finally, he explained everything going on with Shelby in a way that made sense to me; that made doing this shunt make sense. Pretty much after talking with him today, grilling him with questions and going over Shelby's last MRI with him we have decided that we are going ahead with the surgery. It will most likely happen in December. It is not urgent, but not something we should put off, either. His schedule isn't open until December. Hopefully we can schedule it between Scott's finals and Christmas.
We really grilled him on transplant vs. shunt. He spelled it out very clear. She does not have the risk of dying with the shunt surgery like during transplant. Chicago very much so believes in treating the symptoms and not rushing to transplant. Shelby's problem is with her spleen; yes, her spleen has problems because of her liver disease, BUT she has well-compensated cirrhosis so there is no reason to transplant her. Yes, a "new" liver would take care of all her existing problems BUT - and this is a HUGE BUT - it could bring many new ones with....and very well would. Immunosuppressant meds are very harmful to the body. They must be taken, but can cause many problems, including cancer. Dr. Superina was quick to list 5-7 very nasty complications from transplant surgery. One of the things we wanted to discuss was about our desire to seek a second opinion and he seemed to be alright with our wish but really made us think about what we were really looking for. He stressed that we should know what questions to ask and that we were in this situation because Shelby doesn't fit into ANY mold thus making a diagnosis from someone unfamiliar with her would be difficult at best. He pointed out that there were really only two options for most centers, transplant or no transplant and if transplants are all you do what else can they offer. I loved they way he put it " If you're a hammer, everything looks like a nail." He admitted that if we went to multiple centers we could get someone to transplant her, but that quite a few centers would say to remove the spleen. As far as we have heard this is not a good idea for a child but Dr. Superina explained that in most centers it's the adult surgeons that handle these cases even when kids are the patient. He was not trying to persuade us, but gave us very useful information and educated us.
Ultimately the decision to do the surgery is ours as Shelby's parents. After yesterday, I cannot think of a reason to NOT do this surgery. I do NOT want my Shelby going through this pain and recovery, BUT I do not want her to be so susceptible to catching "regular" illnesses that can turn deadly for her. Plain and simple.
We would appreciate prayers as we wait...
(Thank you to Scott for helping me write this entry :-)
We really grilled him on transplant vs. shunt. He spelled it out very clear. She does not have the risk of dying with the shunt surgery like during transplant. Chicago very much so believes in treating the symptoms and not rushing to transplant. Shelby's problem is with her spleen; yes, her spleen has problems because of her liver disease, BUT she has well-compensated cirrhosis so there is no reason to transplant her. Yes, a "new" liver would take care of all her existing problems BUT - and this is a HUGE BUT - it could bring many new ones with....and very well would. Immunosuppressant meds are very harmful to the body. They must be taken, but can cause many problems, including cancer. Dr. Superina was quick to list 5-7 very nasty complications from transplant surgery. One of the things we wanted to discuss was about our desire to seek a second opinion and he seemed to be alright with our wish but really made us think about what we were really looking for. He stressed that we should know what questions to ask and that we were in this situation because Shelby doesn't fit into ANY mold thus making a diagnosis from someone unfamiliar with her would be difficult at best. He pointed out that there were really only two options for most centers, transplant or no transplant and if transplants are all you do what else can they offer. I loved they way he put it " If you're a hammer, everything looks like a nail." He admitted that if we went to multiple centers we could get someone to transplant her, but that quite a few centers would say to remove the spleen. As far as we have heard this is not a good idea for a child but Dr. Superina explained that in most centers it's the adult surgeons that handle these cases even when kids are the patient. He was not trying to persuade us, but gave us very useful information and educated us.
Ultimately the decision to do the surgery is ours as Shelby's parents. After yesterday, I cannot think of a reason to NOT do this surgery. I do NOT want my Shelby going through this pain and recovery, BUT I do not want her to be so susceptible to catching "regular" illnesses that can turn deadly for her. Plain and simple.
We would appreciate prayers as we wait...
(Thank you to Scott for helping me write this entry :-)
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