(stupid iphone pic… from the professional… yes I know…)

That we got some GOOD news! The past week all around has been GOOD news in terms of Kyleigh. I don’t know that we have really located an ANSWER to our issues but in terms of her overall health and human dynamic I think that the things we have learned this week are really a huge relief! Especially with the huge nagging feeling of misgiving that I have had this week my mind is resting a little easier now. I still don’t think we have found the ANSWER but is we can try some new things to see if it can help her then I am good. I don’t care to have an answer just for the answer itself I just want to see Ky feel better!

What we know from this week. Her motility is still not great. But overall her colon look a LOT better than it did months ago. Also her motility is not bad enough to warrant those meds that are so HARD on her system so that is a relief. Overall her anastimosis (the part when they put her colon back together and closed the colostomy… ) looks great which I am VERY happy about.

Yesterday we had the seemingly unending tests. We got REALLY lucky that Ky ended up sleeping through the last two. We were in the flouro room forever… several hours. We had an upper GI and found that she does reflux, which is expected with a g-tube like hers. She actually has moderate reflux. Joe said we could think about zantac which we used once and didn’t really do anything for her. But we do still have prevacid granules here. Reflux would be great to pinpoint and say “this is it” but it still doesn’t explain the fevers, straining to poop, or puking sitting straight up in the car. If it was all at night when she was lying down then I would be gung ho to say YES and call it a day.

Then we had a VCUG and I think we can declare that her Kidney Reflux is resolved!!!!!!!!! She is still showing no signs of Relux! You have no idea how happy that makes me! Just knowing that her kidneys are being protected is enough to keep my going and keep us cathing is with diligence. Every time we are having a bad day with the cathing I can think to myself “I really AM saving her kidneys!” And KNOW that I am doing something that IS helping her. Having that reassurance is GREAT! Bad news… her bladder is ginormous now. We went from a capacity of 120-150CC about 6 mo ago to almost 300CC this time. That is NOT GOOD. Not good at all. I don’t know what that means in terms of her total body system but we DO know that if Ky is NOT cath before every feed then she WILL throw up. I just don’t think there is enough room in her tiny abdomen for her bladder and her stomach both! Also makes me wonder if her pressures are up again too….. Just to compare a normal ADULT bladdder is only 400 CC… so Ky’s bladder in her tiny little body is nearly as big as MINE!

We also had a small bowel follow through… after nearly an hour and a half we we were still waiting for the contrast to enter the colon. When she sleeps her whole system slows WAY down… but lucky enough for us she slept through the entire last leg of the test. And yes.. NO ONE DIE… my kid fell ASLEEP during the tests! I never thought I would see that day and am SO GLAD to know that she has the ability to do that!

I also have to say that with each new issue we manage to come in closer contact with different parts of the medical team at Kentucky Children’s Hospital. I wish that I could give these people the world. More than seriously. Dr. Kriss and Melissa (Radiology) were with us for HOURS yesterday and as always are so attentive, and sensitive in trying to make sure that the process is as painless and least scary to Ky as it can be. Melissa and Ky were playing peek a boo and Ky almost let Melissa HOLD HER! that is so huge. She still is not a fan of Dr. Kriss but at least she doesn’t hate Melissa! LOL Since we have started frequenting the Radiology Dept I have been noticing changes! And these are GOOD! The last time we were in we found that there was a new sand table and kids chairs, coloring books and crayons, and the whole rad dept has been repainted and I believe has new chairs. It doesn’t feel like such an “institution” now.

To Dr. Vesna Kriss… I cannot say enough good about you. I am constantly amazed at how thorough your descriptions are and feel it a privilege to be able to have you on Ky’s team. Thank you for always including us and for explaining everything with so much detail… from the procedure itself to what we are seeing on the screen it is really refreshing to know that someone understand that we like being involved and informed. You always approach Ky knowing that she has been through a lot and take on the procedures in a delicate and caring way. Even just being quiet when she is sleeping and making sure not to wake her up when she was on the table… those little things mean so much to us. To know that someone cares more about my baby as a person than as another procedure or another number… THANK YOU.

To Melissa… What a doll!! Gosh we luuuv u! LOL Thank you for always being so much fun and really trying to make friend with Ky. Thank you for always going out of your way to make sure Ky had the RIGHT tape… or flavoring in her barium. Thank for being so sweet and so caring and sensitive to our baby’s needs. Even though she is very strong willed little girl she is still a baby and I am sure fears things just like everyone else! I truly wish that we did not HAVE to see you and Dr. Kriss so much but it is nice to always know that you guys are there … if we have to end up in the Flouro room we would never pick anyone else to be there with us!! THANK YOU!!!!

It amazes me how much KCH and UK is moving along just in the short amount of time that we have been “frequenting” it. I am honestly tell our friends with PRIDE that our daughter has the majority of her care managed at UK. Everyone is always surprised but I am not. Having spent hours and days and weeks with the PEOPLE at UK I am so happy to say that Ky is cared for by each of them. I always tell my friends and anyone I talk to … PLEASE go into your KCH experience with an open mind and heart. Don’t have pre-conceived notions and be positive. There are GREAT people there and they are more than willing to help… you must CHOOSE to allow them to be a GOOD part of your life!

Popularity: 1% [?]