Special Needs

F/U DS2 hernias and hospital stay

DS2's hernia surgery went well, then he ended up spiking a fever for 12 hours.  He had bloodwork, a urinalysis, and a lumbar puncture.  The only culture that grew anything was his urine and he was "diagnosed" with a UTI and we got discharged at 9PM on Sunday (his surgery was 8AM on Friday).

We followed up at the pedi today (whom I love, we recently changed.  She has a 8 yo DD with Down Syndrome so she's a huge advocate and really entrenched in the SN world here).  She is annoyed that they used a collection bag for the urine sample instead of a cath especially after he had been circumcised.  Who knows what was on his skin after surgery.

And then we told her about DH's family history of kidney disease.  His uncle died at 3 of it, his other uncle had really bad kidney stones and his dad had one removed because of cancer and undergone oral chemo clinical trial after they found issues with his remaining kidney recently.

So now we're getting sent for a VCUG and a repeat urine collection (via the cath during the VCUG) to see what's going on. 

To my boys:  I will love you for you Not for what you have done or what you will become I will love you for you I will give you the love The love that you never knew

Re: F/U DS2 hernias and hospital stay

  • imageToastieSimons:

    DS2's hernia surgery went well, then he ended up spiking a fever for 12 hours.  He had bloodwork, a urinalysis, and a lumbar puncture.  The only culture that grew anything was his urine and he was "diagnosed" with a UTI and we got discharged at 9PM on Sunday (his surgery was 8AM on Friday).

    We followed up at the pedi today (whom I love, we recently changed.  She has a 8 yo DD with Down Syndrome so she's a huge advocate and really entrenched in the SN world here).  She is annoyed that they used a collection bag for the urine sample instead of a cath especially after he had been circumcised.  Who knows what was on his skin after surgery.

    And then we told her about DH's family history of kidney disease.  His uncle died at 3 of it, his other uncle had really bad kidney stones and his dad had one removed because of cancer and undergone oral chemo clinical trial after they found issues with his remaining kidney recently.

    So now we're getting sent for a VCUG and a repeat urine collection (via the cath during the VCUG) to see what's going on. 

    ugh!  I would also suggest an ultrasound too of the kidney's..generally a 'normal' mild kidney work up with be the VCUG and ultrasound.  If you have any questions about the VCUG feel free to shoot them my way, I feel like a uro expert at this point.

    It's hard to tell about the bag vs cath, we have had both done, but normally (especially in a hospital setting) they don't even waste the time with the bag and just do the cath.

    GL, hoping for super healthy kidneys!  (remember if he does have reflux or something else though, DS1 should be checked because kidney reflux is seen in siblings at a high percentage)  

    DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

    DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3


  • imagerealisticdreams:
    imageToastieSimons:

    DS2's hernia surgery went well, then he ended up spiking a fever for 12 hours.  He had bloodwork, a urinalysis, and a lumbar puncture.  The only culture that grew anything was his urine and he was "diagnosed" with a UTI and we got discharged at 9PM on Sunday (his surgery was 8AM on Friday).

    We followed up at the pedi today (whom I love, we recently changed.  She has a 8 yo DD with Down Syndrome so she's a huge advocate and really entrenched in the SN world here).  She is annoyed that they used a collection bag for the urine sample instead of a cath especially after he had been circumcised.  Who knows what was on his skin after surgery.

    And then we told her about DH's family history of kidney disease.  His uncle died at 3 of it, his other uncle had really bad kidney stones and his dad had one removed because of cancer and undergone oral chemo clinical trial after they found issues with his remaining kidney recently.

    So now we're getting sent for a VCUG and a repeat urine collection (via the cath during the VCUG) to see what's going on. 

    ugh!  I would also suggest an ultrasound too of the kidney's..generally a 'normal' mild kidney work up with be the VCUG and ultrasound.  If you have any questions about the VCUG feel free to shoot them my way, I feel like a uro expert at this point.

    It's hard to tell about the bag vs cath, we have had both done, but normally (especially in a hospital setting) they don't even waste the time with the bag and just do the cath.

    GL, hoping for super healthy kidneys!  (remember if he does have reflux or something else though, DS1 should be checked because kidney reflux is seen in siblings at a high percentage)  

    yep we're getting an u/s too.  I didn't mention it, I guess it seems like nothing to me, non invasive, no sedative haha.  Yep, if something is wrong DS1 will get tested and if he has it DH is going for a kidney function test.

    just something else to add to our bag of junk. 

    To my boys:  I will love you for you Not for what you have done or what you will become I will love you for you I will give you the love The love that you never knew
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  • imageToastieSimons:
    imagerealisticdreams:
    imageToastieSimons:

    DS2's hernia surgery went well, then he ended up spiking a fever for 12 hours.  He had bloodwork, a urinalysis, and a lumbar puncture.  The only culture that grew anything was his urine and he was "diagnosed" with a UTI and we got discharged at 9PM on Sunday (his surgery was 8AM on Friday).

    We followed up at the pedi today (whom I love, we recently changed.  She has a 8 yo DD with Down Syndrome so she's a huge advocate and really entrenched in the SN world here).  She is annoyed that they used a collection bag for the urine sample instead of a cath especially after he had been circumcised.  Who knows what was on his skin after surgery.

    And then we told her about DH's family history of kidney disease.  His uncle died at 3 of it, his other uncle had really bad kidney stones and his dad had one removed because of cancer and undergone oral chemo clinical trial after they found issues with his remaining kidney recently.

    So now we're getting sent for a VCUG and a repeat urine collection (via the cath during the VCUG) to see what's going on. 

    ugh!  I would also suggest an ultrasound too of the kidney's..generally a 'normal' mild kidney work up with be the VCUG and ultrasound.  If you have any questions about the VCUG feel free to shoot them my way, I feel like a uro expert at this point.

    It's hard to tell about the bag vs cath, we have had both done, but normally (especially in a hospital setting) they don't even waste the time with the bag and just do the cath.

    GL, hoping for super healthy kidneys!  (remember if he does have reflux or something else though, DS1 should be checked because kidney reflux is seen in siblings at a high percentage)  

    yep we're getting an u/s too.  I didn't mention it, I guess it seems like nothing to me, non invasive, no sedative haha.  Yep, if something is wrong DS1 will get tested and if he has it DH is going for a kidney function test.

    just something else to add to our bag of junk. 

    yeah like easy peasy vs other stuff!  I just wanted to make sure they were doing it.  The VCUG is 'easier' on smaller babies I feel.  M did way better with her first than P did, etc.  But having a bottle ready for when they actually start the procedure seems to work better than giving one while getting ready.  He may get fussy during the cath/while setting up but the most important thing is that he's more calm during the actual test.

    GL when are they scheduled for? 

    DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

    DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3


  • Glad lo is doing okay. I agree with RD on her points on u/s and VCUG - and it is much easier on a newborn than bigger kids. DS is awful with them now, he doesn't like his bits being handled. I hope they give you the all clear on those, kidney trouble is no walk in the park (sounds like you knew that already though).
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