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Thread: Another lymph node update

  1. #31

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    Praying for him!



  2. #32
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    I have a copy of his blood results from January but they were reported differently since it was done by a different lab group. I'll have to look around to see how I would convert them to see if things are similar. He does have some high and low results this time, too, but they are not necessarily the same things.

    Thank you for all the prayers!

    I had a freak out moment today because at the pedi office today I requested the January results and they gave me the results from June from the transferred medical results (they had fax dates of January on them because that is when they were faxed). When I saw that they were identical I got very worried but after awhile I saw that the test date was in June so these should in fact be identical.
    Jessica (32) and Ryan (32). Madelyn born August 5, 2009; Malachi born December 23, 2010 and Nathaniel born July 19, 2013. Lost a loved baby 02/29/12, 05/14/12 and 07/05/12 all due a serious allergic reaction to fabric softener.
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  3. #33
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    They cancelled the CT scan just as we were about to head out the door this morning after we all got up early (I was just about to wake Malachi up and put him in the warmed us car. Madelyn had already woken up with the activity). They said that they only do pediatric patients during the week. I don't know why the scheduler didn't know this but she also first scheduled us at a closer location even after I asked if he needed to go to the big hospital since he was 2. So it turns out that he needs to go to the big hospital during the week only. So it will be an hour in the car during rush hour traffic first thing in the morning sometime this week hopefully. I was NOT happy this morning at all.
    Jessica (32) and Ryan (32). Madelyn born August 5, 2009; Malachi born December 23, 2010 and Nathaniel born July 19, 2013. Lost a loved baby 02/29/12, 05/14/12 and 07/05/12 all due a serious allergic reaction to fabric softener.
    Check out our business, JRSolutions.

  4. #34
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    Quote Originally Posted by JJorn View Post
    They cancelled the CT scan just as we were about to head out the door this morning after we all got up early (I was just about to wake Malachi up and put him in the warmed us car. Madelyn had already woken up with the activity). They said that they only do pediatric patients during the week. I don't know why the scheduler didn't know this but she also first scheduled us at a closer location even after I asked if he needed to go to the big hospital since he was 2. So it turns out that he needs to go to the big hospital during the week only. So it will be an hour in the car during rush hour traffic first thing in the morning sometime this week hopefully. I was NOT happy this morning at all.
    Oh my word Jess! I would not be happy either !!
    Dh (39) Me (37) 8bio 1adopted, 14 angels






  5. #35
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    We are going in for the CT scan tomorrow. It's about an hour trip so we have to leave the house no later than 6:30 am. Yikes! But it is free pancake day at the IHOP restaurants in the area so we will happily eat there afterwards. The kids both work up with mild fevers and runny noses today so we hope that won't complicate things tomorrow.
    Jessica (32) and Ryan (32). Madelyn born August 5, 2009; Malachi born December 23, 2010 and Nathaniel born July 19, 2013. Lost a loved baby 02/29/12, 05/14/12 and 07/05/12 all due a serious allergic reaction to fabric softener.
    Check out our business, JRSolutions.

  6. #36

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    Sending prayers for good news following the CT scan!!
    ~Andrea~


  7. #37

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    Prayers for good news and easy time with the scan
    KEVIN (6) & MATTHEW (4)

  8. #38
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    I have never had such issues with this hospital before. I've had zillions of tests there, two babies and two surgeries.

    We got there for the pediatric staff to say that they have never been able to complete a successful CT scan of the neck region in a small child without sedation. They said this test should never have been scheduled without sedation. Even if Malachi were to just cry or breathe quickly there would be too much movement in that region for clear scans.

    So, yeah. We were very not happy again. This time we had to drive 45 minutes first and get all checked in to find this out. The staff said that they will talk about this with the scheduler and the radiologist that knew nothing about pediatric patients that said it was ok to schedule without sedation. They validated our parking ticket to so we didn't have to pay to park but that was a drop in the bucket. We called the ENT and are waiting for a call back to see if we can just skip this...probably not though.

    The nurse did say that the sedation for the CT scan is just a shot in the leg that makes his sleepy. I didn't think to ask how long it would last but they did say that sedation for an MRI is much more extensive.

    We are all grumpy now as I had to get up two hours early and the kids about 1.5 hours early to make it to the appointment in time.
    Jessica (32) and Ryan (32). Madelyn born August 5, 2009; Malachi born December 23, 2010 and Nathaniel born July 19, 2013. Lost a loved baby 02/29/12, 05/14/12 and 07/05/12 all due a serious allergic reaction to fabric softener.
    Check out our business, JRSolutions.

  9. #39

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    sounds about like what were about to go thru... but the drive for us is 90 minutes.... i wish that hospitals and drs could all just communicate and be on the same page... if they were all on the same page then there would be much less stress for parents and they could focus on caring for their children.


  10. #40

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    So why could they not just do the sedation and CT scan today, since you guys were there? This is getting absurd!

    ~*~Katrina~*~ Momma to Xander, Hayden & Lily (5 1/2) and Jericho (3)
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  11. #41
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    Not sure but they had to first verify that he has had a physical in the last 30 days (he actually did since his two year well check happened late in mid January) and also coordinate with the anesthesiology department. We didn't really ask why they just said that we couldn't do it today.
    Jessica (32) and Ryan (32). Madelyn born August 5, 2009; Malachi born December 23, 2010 and Nathaniel born July 19, 2013. Lost a loved baby 02/29/12, 05/14/12 and 07/05/12 all due a serious allergic reaction to fabric softener.
    Check out our business, JRSolutions.

  12. #42

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    Yow. I would throw an incredibly major hissy fit over that. It is absolutely standard protocol that a 2 y/o needs sedation for CT. Major procedural issue at the hospital; I would complain to the director of the imaging center. And, as a ped, if a patient told me that story, I would raise holy hell behind the scenes as well. So sorry you are getting the runaround.

  13. #43
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    Thank you all. If this finally works on Thursday we will have had four appointments scheduled to get one simple test done. If this is the only hospital in the group that does pediatric patients why not have a group of schedulers train to handle the scheduling of pediatric patients or how about just forwarding us right to the individual departments. I can't imagine that we are the only people needing to have these tests done on small children.

    So the appointment is now set for Thursday at a completely awful time - 10:30. The radiology nurse said that she pleaded and begged with anesthesiology for an earlier appointment and was told absolutely not. I'm supposed to essentially wake up my child to feed him something before 4 am and then he can have nothing more than water or apple juice from 4 am to 7 am (his normal wake up time is 7:30). We need to be at ambulatory surgery by 9:30 am to check in and get him checked out. They will then transfer him down to radiology give him the anesthesia and the IV, do the scans and then send him back up to wake up. We should be out about 30 - 45 minutes later. If he is anything like me and anesthesia he might vomit a bunch and be very slow to wake fully. Ugh. I also don't want to eat for up to a week afterward but hopefully since this is supposed to be such a small amount he won't have any of those effects (or better yet not ever have any of those problems with anesthesia).

    Does anyone else find this completely ridiculous? I did tell my DH this and now he says that he does plan to call and complain about this whole situation. He originally wasn't going to complain any additional amount but he finds this new plan "absurd and unworkable."
    Jessica (32) and Ryan (32). Madelyn born August 5, 2009; Malachi born December 23, 2010 and Nathaniel born July 19, 2013. Lost a loved baby 02/29/12, 05/14/12 and 07/05/12 all due a serious allergic reaction to fabric softener.
    Check out our business, JRSolutions.

  14. #44

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    How frustrating! Hope to get it done soon
    KEVIN (6) & MATTHEW (4)

  15. #45
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    This is all just absurd.

    First of all I would be LIVID if I had shown up at that appointment and they couldn't do it and for no better reason than because one hand is not talking to the other. Omg. I can't handle how incompetent and lazy people are lately.

    Can you hold out for an appt that works better for you?

    So sorry you are dealing with this!
    Thing 1 (7), Thing 2 (5), Thing 3 (20M)

  16. #46
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    My understanding was that they won't do this before 10:30 period (which I find utterly ridiculous). My DH did call the nurse and left a voicemail as she was already gone for the day to clarify this.

    We were quite mad but the people that told this to us today were not the people responsible for the mess. They were just the lucky ones that got to explain the mess to us. My DH is really stressing about it now since he took time off work to go with and watch my older one today. We've both been running around crazy with this situation: on the phone, in the doctor office, at the hospital, getting blood work done, etc. And we are no where near having this figured out yet. Most likely once this is figured out we'll have therapy of some sort. We hope that it won't be more serious than removal.
    Jessica (32) and Ryan (32). Madelyn born August 5, 2009; Malachi born December 23, 2010 and Nathaniel born July 19, 2013. Lost a loved baby 02/29/12, 05/14/12 and 07/05/12 all due a serious allergic reaction to fabric softener.
    Check out our business, JRSolutions.

  17. #47

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    That's awful. Is your ped's office able to help guide you thru this? It sounds like people at the hospital are clueless.
    My 3 yo cuties!

  18. #48

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    You know, thinking more about this...I would talk to your ped. If they don't do enough kids to schedule them right (and those were MAJOR mess ups) do they do enough kids to safely sedate them? Do they dial down the radiation dose on the scanner for pediatrics? Would it be worth biting the bullet and going to a Children's hospital? It just all is so far outside of what I normally see, and I order CTs and MRIs with sedation at least weekly. Something's not right. Sorry to add to your worry but I would look into it a little more closely. Better safe than sorry.

  19. #49

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    Quote Originally Posted by tapir View Post
    You know, thinking more about this...I would talk to your ped. If they don't do enough kids to schedule them right (and those were MAJOR mess ups) do they do enough kids to safely sedate them? Do they dial down the radiation dose on the scanner for pediatrics? Would it be worth biting the bullet and going to a Children's hospital? It just all is so far outside of what I normally see, and I order CTs and MRIs with sedation at least weekly. Something's not right. Sorry to add to your worry but I would look into it a little more closely. Better safe than sorry.
    What a nightmare just scheduling is. Is there a children's hospital you could go to? It is worrisome that they aren't following standard protocol in regards to sedation and scheduling and that they seem to be inflexible with scheduling the test any earlier.

  20. #50
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    We live in Chicago so we have a big one downtown - I think that the name just changed. Right now we are in a very wealthy medical system which is why this is so surprising. We are also on an HMO so I would have to somehow get a referral to a doctor there. I'm doubtful that they are in network but you bring up very excellent points. The ENT is the one who ordered these tests but it probably is time that we let his pediatrician know about difficult this has been. I do really like the ENT.

    Ugh. Why does this have to be so messed up? Don't we have enough things to worry about?
    Jessica (32) and Ryan (32). Madelyn born August 5, 2009; Malachi born December 23, 2010 and Nathaniel born July 19, 2013. Lost a loved baby 02/29/12, 05/14/12 and 07/05/12 all due a serious allergic reaction to fabric softener.
    Check out our business, JRSolutions.

  21. #51

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    It seems like somehow you got on a path with people who are not familiar with ped patients? For what it's worth, we are from Chicago and one of my nephews was at Children's memorial when he was a baby and they were amazing. The GI for my DS is also at a childrens hospital and everybody has been so kind to us and offered very detailed follow up b/c they understand how stressful this stuff is to go thru as a parent. If this craziness continues, I would see if your ped would refer you to Childrens. The worst they can do is say they can't or won't.
    My 3 yo cuties!

  22. #52
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    I don't think that my DH wants me to do anything until after he talks with the radiology nurse. At this point, I'm not going to keep this appointment tomorrow.
    Jessica (32) and Ryan (32). Madelyn born August 5, 2009; Malachi born December 23, 2010 and Nathaniel born July 19, 2013. Lost a loved baby 02/29/12, 05/14/12 and 07/05/12 all due a serious allergic reaction to fabric softener.
    Check out our business, JRSolutions.

  23. #53
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    Quote Originally Posted by JJorn View Post
    I don't think that my DH wants me to do anything until after he talks with the radiology nurse. At this point, I'm not going to keep this appointment tomorrow.
    That sounds like a good plan. I would absolutely hold out for the children's hospital!!!
    Thing 1 (7), Thing 2 (5), Thing 3 (20M)

  24. #54

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    i would get a referral to childrens memorial hospital... now called Lurie childrens... they are the ones i will be dealing with if dds lump does not shrink. they have been the helpful ones so far... its my local pedis office thats messing things up!
    hope that you can get things straightened out!


  25. #55
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    THEY CANCELLED THE CT SCAN AGAIN!

    My DH will be calling the ENT and I will be calling the pediatrician once the kids are down for a nap/quiet time. if they can't get us to Children's we will make a lot of noise with the insurance company. I did also talk to my friend who was a nurse at Children's until the moved and changed names and she is going to see what we need to get in there, too.

    The radiology nurse said that the surgery nurses said that his two year old physical was not a presurgical physical so he needs to have that done before he can have anesthesia.
    Jessica (32) and Ryan (32). Madelyn born August 5, 2009; Malachi born December 23, 2010 and Nathaniel born July 19, 2013. Lost a loved baby 02/29/12, 05/14/12 and 07/05/12 all due a serious allergic reaction to fabric softener.
    Check out our business, JRSolutions.

  26. #56

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    Quote Originally Posted by JJorn View Post
    THEY CANCELLED THE CT SCAN AGAIN!

    My DH will be calling the ENT and I will be calling the pediatrician once the kids are down for a nap/quiet time. if they can't get us to Children's we will make a lot of noise with the insurance company. I did also talk to my friend who was a nurse at Children's until the moved and changed names and she is going to see what we need to get in there, too.

    The radiology nurse said that the surgery nurses said that his two year old physical was not a presurgical physical so he needs to have that done before he can have anesthesia.
    What a pain! I have to say that with all the issues, and continued issues, your son should really not be getting any kind of medical treatment at that hospital. I would not trust them if they can't even get their act together to schedule a test.

  27. #57

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    Quote Originally Posted by tapir View Post
    You know, thinking more about this...I would talk to your ped. If they don't do enough kids to schedule them right (and those were MAJOR mess ups) do they do enough kids to safely sedate them? Do they dial down the radiation dose on the scanner for pediatrics? Would it be worth biting the bullet and going to a Children's hospital? It just all is so far outside of what I normally see, and I order CTs and MRIs with sedation at least weekly. Something's not right. Sorry to add to your worry but I would look into it a little more closely. Better safe than sorry.
    This. I do know that there have been issues at less experienced medical centers that do not know how to adjust radiation dose for pediatrics and end up giving the adult dose. I would be headed to a Children's Hospital.
    Me 38, DH 38, DS 5/28/08, DS 7/6/10

  28. #58

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    lurie should be way better at dealing with the needs for our children.... they have been super helpful and accomodating over the phone with me.... even with my local drs office screwing stuff up.
    hope you can get in, get a scan and that they make it easy for you.


  29. #59
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    So the pediatrician's office and the ENT's office were livid about this all. They sorted it out so that we now have our fifth appointment on Tuesday....just four days before my DS's physical expires for pre-surgery/anesthesia ok. I do hope that we will be able to get his biopsy done really quick so I don't have to go back for another physical. My DS is starting to be upset with doctor visits and I don't want to bring him in if I really don't have to do so.

    I have a friend that works at Lurie's as a nurse and she did say that we could petition for care but the review takes 5-7 days and might only be for one visit. She isn't sure. Her director said that we could get in for testing immediately but it would be expensive.

    Ugh. My DH hasn't called the insurance (he doesn't want me to since he thinks that I will be too nice about it all and I probably would) as he has been overloaded at work. We would likely have to petition for care and that will take time. We don't really know how much time we have since we don't know what this is. The ENT said that there are slow growing things that this could be and doesn't really want to spend a lot of time just watching it at this point.

    It may be a bit smaller but that could just be wishful thinking on our parts.
    Jessica (32) and Ryan (32). Madelyn born August 5, 2009; Malachi born December 23, 2010 and Nathaniel born July 19, 2013. Lost a loved baby 02/29/12, 05/14/12 and 07/05/12 all due a serious allergic reaction to fabric softener.
    Check out our business, JRSolutions.

  30. #60
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    Wow...that is all just unreal !!! (((Hugs)))!!! Really praying he gets the diagnostics and treatment he needs asap! I'm so sorry you're going through all of this
    Dh (39) Me (37) 8bio 1adopted, 14 angels






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