This pic was taken during Ky’s allergy testing on Friday July 11, 2008.Today’s Cystoscopy was a huge success!! I have to really compliment Dr. Alam today. I have been hard on him some other times but I truly just want answers. I don’t want to add diagnoses or surgeries. I just want to know what is wrong and how to fix it. I know that it seems to have been his opinion until now that what “this” is… may not be fixable. I know that for any parent that would be a hard thing to swallow and I know that he must see ample reaction to these kinds of statements. I also know… that I “know” things. I just know…. and like SO many other times before, I was right.
There was something wrong. Interesting and puzzling all at the same time. During the scope Dr. Alam found that Ky’s bladder, despite being cathed only three hours earlier was grossly full. He saw a “ton” of debris and the stasis was pretty severe. Stasis meaning her bladder is not emptying even though we are cathing and there is literally “pools” of old urine in there. You know what a public bathroom at a pool smells like? Dr. Alam said that Ky’s bladder and urine smelled much like that. God only knows how long that stuff had been in there. So he sent it all out for cultures to grow and we should know within a day or two if there is infection brewing in there from the Stasis. Mostly he says that this puzzles him. Obviously this is NOT a good state of affairs for her bladder. As bad as it is it comes as a welcome relief to know that there is something SIMPLE wrong with her bladder. Not anatomical, not anything that would require surgery or a vesicostomy, augmentation or otherwise major change. This is not something that he even wants to change our medication regime.
He said he knew that this would be hard for us to take and may make us even more frustrated that we are battling to cath her but still not emptying but truly… it doesn’t. I am honestly 100% relieved to hear that it is as simple as an emptying issue!!!!!!!!!!!! I am not frustrated at all… I am more determined to find a method of cathing that will work to empty her bladder FULLY and efficiently. I know there are many “cathing” moms out there… anyone with tips, hints etc… PLEASE EMAIL ME!!!!!!!
Long story short we will be heading back to Cincy for a 24 hour / overnight stay to have Dr. Alam and some of the expert nurses evaluate Ky’s cathing regime and make modifications that would hopefully make her empty better and eliminate the Stasis that is so dangerous to the health of her bladder. I hope to get that done sometime in August as that will be a slow month before the fall weddings kick into gear.
My child is allergic to………………………………………. absolutely nothing! Nothing on the panel showed for allergy. No food, no environmental, no molds or pollens etc. I have never been so relieved in all my life. I empathize so much with the parents who have kids with food allergies… I was allergic to Wheat and Milk proteins and it SUCKED eggs. I also had such bad allergies that I had shots TWICE per week and if anyone in my neighborhood mowed the grass I could not even leave my house. I still to this day cannot be outside while someone is mowing or walk through freshly cut grass. My feet swell, my throat swells… its bad… but I digress.
We are off the hook for the allergies. One interesting thing that we did manage to come across with the allergist is that she had pulled the results of Ky’s bronchoscopy from Feb of last year and asked who her pulmonologist was. Pulmonologist? We have one? NOPE…. evidently in the midst of the craziness of the CICU stay it was “overlooked” that Ky should be seeing a pulmo for her anomaly in her lungs and because SHE SHOWED ASPIRATION on the Bronch… nice. Thanks for informing us. I appreciate that. That single piece of information would have been enough to warrant a Nissen straight off hand when we put in the G-tube and NOW my child is going to most likely undergo ANOTHER surgery to get the Nissen. I am NOT happy about this “miscommunication”. I was never given copies of the bronch results… I never really even got to talk to the doc who did it. So I guess now we will go on an adventure through pulmo land just to double check on her status.
The past two weeks have brought a wealth of knowledge that will help us continue to piece together the puzzle that is Kyleigh. Dr. Alam today said “Kyleigh has one of your personalities to a “T”… I will let you two duke it out over who that is…” I almost said… WTH is THAT supposed to mean … but you know what. A much younger, more naive version of myself would have been pissed off over that. Now… I take that as a compliment. Yes Ky may be hard to deal because she is so strong willed and determined but that is what has carried her through. It is amazing to think that I was the one who was able to “gift” her those traits. I am really honored.
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Amber,
Sounds like you are two steps forward and not taking one back, just for a change
Delighted that you have some answers and that they can be managed in a less intrusive manner than surgery-fantastic news.
Yay for Ky, what a clever possum.
B
Yaaa for NO allergies!!
I hope you guys have finally found some answers for that sweet little girl of yours.
It sounds like you have!!!
Hmm interesting about the cath situation.
Eithene also retains urine even with cathing. If you just let it drain out the catheter she will leave about 2 ounces inside. We PUSH -sometimes hard- on her bladder from the outside as we cath her. Then I usually re-insert the catheter and try again- pushing on her bladder the whole time. This helps a lot.
The other thing to try is going up a cath size. Our urologist told us that if we kept seeing a lot of urine retained even after cathing that we could go up from an 8 fr coude to a 10 fr coude catheter and that this ought to help.
Eithene still has a fair number of UTIs, so we know that for her the retention is harmful. I hope that Ky’s cultures look ok!
I am glad to hear about the no allergies, although Ky could still have a lot of intolerances (simply means the ‘allergic’ reaction is NOT mediated by IG antibodies) which is what EIthene has. So, if you see a lot of food issues still, I would consider that type of problem.
As for the pulmo issue- well that stinks
Before getting the fundo though I would make them re-do a swallow study to see if they can find the source of the aspiration Because if she is aspirating from above (ie it goes down wrong when she swallows) then the fundo won’t help you at all, and what you have to do is thicken her drinks. Just for thought- Eithene has a fundo, she doesn’t aspirate from above (on a regular basis) but, she STILL has aspiration of stomach fluids on all her bronchs.
Hope you can get to the bottom of that- yay for adding another dr- not.
Overall though, it sounds like a pretty positive few appointments!
Jessica
http://www.caringbridge.org/visit/eithenerosehilliard
Totally agree with Jessica on the aspiration part. Make sure where it’s coming from. I’d get a copy of the report.
We found out when we were about 5 minutes from Wesley’s lung biopsy that he had a whole in his heart and pulmonary hypertension: oops did they forget to mention that 6 months before when he had his echo, nope haven’t been seen by cardiology. A freakin nurse mentioned it to us, not realizing we didn’t know. It was ugly.
Sometimes you want to strangle the hospitals/attendings.