UTI Journey

A UTI that landed her in the hospital with her stomach shut down

Emma's chronic battle with UTI's started in April 2017 and it has been incredibly hard especially since at his point July 2020 we still don't have any answers. When Emma gets a UTI we have to do a lot of "reading" Emma, for example Emma doesn't get fevers. So we have to watch for the following, increased heart rate, seizures, stiffness, vomiting or the start of it with lots of gurgling, holding urine or going a ton on her own like constantly, and occasionally the smell/look of her urine. We have tried so hard to help her with these from her pediatrician to 3 different urologists and infectious disease. The last urologist also took it to an online group of Drs that he works with from all over. We have just exhausted all measures and tried so many things to help Emma overcome these chronic re-occuring UTI's (list below of our treatments). One of the biggest struggles for Drs is that Emma keeps growing rare bacteria and she can move from one UTI to another; while on antibiotics for one she grows another bacteria that is resistant to that antibiotic forcing us to start a second antibiotic. Some bacterias have been so resistant that they have required adult antibiotics that are super hard on kiddos. These UTI's are obviously painful but for Emma they also trigger a load of things that are a making this battle even harder and more scary....

     * Seizures (Emma is seizure free without a UTI)

     * Vomiting to the point of her stomach shuts down (stomach ileus)

     * Dehydration due to the vomiting requiring hospitalization for IV fluids

     * Her body gets so stiff she can't bend in half to get in her chairs/or be held

     * Her heart rate skyrockets 

     *Holding her urine and making caths extra hard to get it all out

VCUG (2nd time) in 2020

Here is a full list of tests and treatments that we have tried over the last few years....meanwhile multiple UTI's (over 30) are still happening between all these tests and treatments.....

* May 2017 - VCUG to check for urine reflux - NORMAL

* May 2017 - Kidney Ultrasound - NORMAL

* Jan 2019 - Urologist suggest she has
      neurogenic bladder and to cath her twice
      a day AM/PM

 * Jan 2019 - Added cranberry, vitamin C and D-Mannose  

 * Jan 2019 - Start prophylactic antibiotic
 * April 2019 - Start bladder irrigations to clean out
      anything that might be hanging out in the bladder
  *May 2019 - Started Morning Celery Juice - we found some
      research proving celery juice could help reduce the bacteria causing
      UTI's (however with all her different bacteria that she grows it didn't help
      but it did help with keeping things moving in her bowels (great for
       constipation)
  *June 2019 - Video CMG - to test how effectively the     
       bladder empties itself when full (Emma's bladder is very spastic and
       stretches, she can hold as much urine in her bladder as a grown adult) The
       amount she could hold shocked Drs., she did eventually empty her
       bladder during the test. But it did confirm her neurogenic bladder.
  *July 2019 - Directed to start cathing 2-4 times a day if she's not
       emptying within 4 hours.
  *Nov. 2019 - Started Gentamicin flushes - Putting antibiotics directly into
       her bladder nightly and emptying in the morning. This worked and gave
       her two months with no UTI's we thought we found her solution......
       but then 4 more after that so we proceeded....
  * April 2020 - Repeat VCUG - NORMAL still no reflux found
  * May 2020 - Started Methenamine - another prophylactic antibiotic
5 More UTI's led us to
  * July 2020 - MRI to check for tethered cord - MRI Normal
         No tethered cord
  * July 2020 - Appointment with infectious disease
  * UPCOMING Aug 2020 - Vesicostomy surgery

     

       Poor Girl when she got diagnosed with her first UTI (April 2017)

Some Questions we have been asked......

Why 3 urologists???? 

Another hospital for UTI caused stomach issue

     Well the first one was set on all that we could do was Cath her 4 times a day and take the prophylactic antibiotic. She wouldn't give us any other treatment options. So if you know us you know that wasn't going to fly with us. So we requested a new urologist. The second Urologist gave us the chance to try gentamicin flushes and irrigations which was great but then when they didn't work he said, and I quote...."Well maybe we just need to pick which ones we treat and not treat them all" WAIT WHAT?!?!?!? UMMMM no we will treat all my daughters UTI's they cause her so much pain, vomiting, seizures and not to mention possible sepsis. No thank you! One word of that info passed along to our pediatrician and he decided to look around and hand pick our latest Urologist. He listened and he let us get the MRI, try a new prophylactic antibiotic, and now gave us the vesicostomy plan. He even took her to a board of other urologists to help find new suggestions on how to treat Emma. 

Being a champ at yet another Dr appointment for UTIS 

What is a vesicostomy?

A vesicostomy is a procedure in which a small opening is made in the lower abdomen (usually just below the belly button) to allow urine to drain out from a child's bladder. This usually is done when an infant or young child has problems emptying his or her bladder 

Why does her stomach stop working when she has a UTI?
This is a tricky question as no one can be 100% sure why but this is what they are thinking is happening. When Emma gets a UTI her bladder gets inflamed and irritated which then puts pressure on her stomach and bowels. This can trigger constipation (which she already struggles with) and it can also apply pressure to the stomach causing her to vomit and make a "blockage" in her system. They call it a stomach ileus meaning a mechanical blockage not a physical one. Her stomach basically gets paralyzed and cant move things along so she chronically vomits and requires us to go to pedialyte for sometimes 10 days. Other times it lands us in the hospital for days of IV fluids and meds until her stomach can even handle pedialyte.

Does Cathing bother her? 
No cathing doesn't seem to bother her. Sadly I think she is just use to it and sometimes she actually looks relieved when we do it. Can you imagine that much urine and not being able to get it out.

Do you clean cath or sterile cath?
We have done both. We started with a clean cath meaning we didn't use the betadine sticks for cathing but recently we went to sterile caths in hopes that it would help and sadly it didn't.

Will the vesicostomy stop the UTI's?
Sadly nothing is a guarantee but we feel it's worth a try even if it just decreases the frequency of the UTI's we feel that it is worth it.

Can she still swim with a vesicostomy?
YES!

THANK YOU!
To end I just want to say thank you to our social media and special needs community as some suggestions of things to try came from all of you. Also a huge thank you to Emma's Pediatrician and her 3rd urologist for listening to us and exploring options outside of the box to treat Emma. I will update this post after her vesicostomy and praying its a positive update.

I wrote all this out in hopes that it can help another family if they run across this horrible chronic UTI situation. Some of these treatments are "typical" treatments that a Dr would suggest and some aren't; some are things our Drs. have never even tried before. Sending love to those who are reading this for tips because my heart hurts for you as this is not an easy battle to add to an already hard battle of lissencephaly (or other diagnosis).

LOVE YOU ALL!