I posted this on my facebook and for the sake of saving my aching fingers I am copying and pasting most of it.  If you read it there… feel free to skip it here!

Yesterday was another “fun” day in Cincinnati. We had a day full of VCUG, Renal Scan, labs and appt with Dr. Alam. Here are the results of the testing and decisions made:

1) The reflux in her left kidney is persistent and NOT being positively affected by our extreme measures in cathing, meds etc. She WILL, without a doubt, need a ureter re-implantation within the next year or so.

2) Her bladder looks MUCH better than it used to meaning that the Gent. bladder irrigations are doing good work on it. Downside is that her bladder still holds nearly TWICE what a 4 year old’s bladder SHOULD hold. As a matter of fact, she nearly has the capacity of an adult. This is a double edged sword because it gives her the tendency to hang on to urine much longer than necessary and increases her risks for infection. BUT because it IS so big she also will likely NOT need a bladder AUGMENTATION unless other factors happen after her other urology surgeries. That is a huge THANK GOD, AMEN, HALLELUJAH!!!! Because augmentations are NOT nice surgeries.

3) Even WITH her big old bladder she still CONSTANTLY leaks urine meaning that her bladder neck needs tightening (surgery required for this also) and after that is completed she will LOSE the ability to void on her own … ever.

4) Which will require ANOTHER surgery – Mitrofanoff (tract made through the belly button for her to be able to cath from there instead of below).

5) Good news is that Alam can do all of these things in ONE SURGERY! We also have decided that it is HIGHLY likely that Kyleigh will get a MALONE while she is in the OR. Trying to put a malone in AFTER the grand scale of the urological surgeries is NOT a good idea so we will get the malone. Kyleigh is also proving to us that her bowels, intestines, GI system is going to stump everyone. Theoretically she should be able to eat, but she can’t, won’t doesn’t… She stays constipated and battling that is tiring and dangerous for her because she literally backs all the way up… If for some reason we don’t use the Malone (another surgical procedure that creates a pathway to allow for enemas without using the rectum) it can be removed relatively easily. It is likely that Dr. Levitt will end up installing this during the round of urology surgeries.

So… her surgery will be long and the recovery is TOUGH. Alam has told us to plan to LIVE IN CINCY for up to 4-6 weeks depending on Kyleigh’s healing. Kyleigh will be inpatient for a while and on TPN after surgery until the Malone and Mitrofanoff can be used.  This will still be problematic because Kyleigh will eat… especially when you tell her no!  She just doesn’t consume enough calories to sustain life.  This will not be easy for our family but we know that our upcoming move will make it a lot easier. We also are ALL in agreeance that Kyleigh will need this done within the next year or year and a half. We advocate having it done, and healed BEFORE she goes to school just because that will be BEST for her…. to have her new routine, know it well and NOT have to be pulled out of school for more surgery.

We are FINE even HAPPY about this because we have come to terms with the fact that Kyleigh will NEVER be naturally continent. We know this… we held out hope as long as we could and we now know that her body is going to do whatever it wants and what it wants is NOT to be continent… LOL. We want to do what is BEST for Kyleigh to grow up and have as normal a life as possible. We know that she will cath for the rest of her life, and we know that without these surgeries she will not be “dry”. We don’t want her to go through the emotional strain of that when we know that this is inevitable anyhow. So… we will see Alam again at the end of August / beginning of September, after wedding season calms down a bit, and we will schedule this surgery for October / November.

This will NOT be easy. It will likely be HARDER than the month we spent in the CICU because Kyleigh is OLDER and WISER and understands more now than then. Kyleigh will not be allowed to have anything by mouth for a long period of time and although we say she doesn’t eat… she is NOT orally averted. She LIKES to eat she just cannot consume enough calories each day to keep herself alive and healthy so we will be depriving her of food and we ALL know how fun that will be. It will not be like CICU when she was unconscious for weeks and all we had to do was watch the monitors and pray…

It is also likely that Troy will NOT be able to be in Cincy with me the entire time so I am trying to get myself “psyched” up to handle this on my own! Kyleigh can be a handful and very much reverts to being a “baby” when she is hospitalized.
I know the first question I will get from everyone is “What can we do?” -

Well we will be making a calendar of fun things to do and people to who will volunteer to make some time fun for the boys here at home.  We also are busy trying to collect a large number of DVD’s to keep Kyleigh entertained.  If you have ones that you would be willing to put on loan to us for a month (I promise I will Lysol the cases before I bring them back!) or you have extras of the girly movies like the Barbie series or Disney Classics (or Princesses especially) that you would be willing to sell cheaply… please let me know!  I am also looking for ANGELINA BALLERINA and Spongebob.  We were only in KCH for a FEW days in January and 4 DVD’s were just not enough!!!  I am looking at a few lots on Ebay but some of those are getting HIGH on the bids!  I have to wait for them to be CHEAP!  LOL

Another way to help is to help me think of activities and items for Kyleigh to play with while in the hospital.  After she is released we will be able to do things like the zoo and acquarium etc… but while she is inpatient we will have to have lots of fun things.  From previous hospital experiences I know that Ky loves:

STICKERS – these are doctor’s office and hospital reserved treats because at HOME they end up on the furniture and then I have to threaten people’s lives… it just doesn’t work out … LOL

PLAY DOH- At home this stuff gets left out on day 1 and then its all crusty after that.

COLORING BOOKS and MARKERS- Ky is not allowed to use markers at home without direct supervision… you can use your imagination to figure out why.  So when she GETS to use them in the hospital she thinks they are magical!

BOOKS- particularly anything pink… and princess… or Barbie.

TEA PARTY- We will take her Tea Set for all those days when she cannot eat.  Hopefully that will pacify the beast for a bit.

IPHONE games- Kyleigh has really gotten into a matching game and a puzzle game on my iphone.  I will likely put a handful more on there for her NEW before we go… you know the novelty of NEW things is always best!  So if you have suggestions let me know!

Any OTHER suggestions would be GREAT!!!  I know I will likely pack the entire house but hey.. a woman’s got to have options!

For our friends and family here… we will need your help and support in helping our boys to continue their lives normally. Ross and Owen will BOTH be in school and we do NOT want them to have to miss anymore life events or school for Kyleigh’s issues. Its not fair to them… so anyone who is willing to help out with our boys at home for a few hours one or two nights a week, that would be awesome! That way my parents can come to the hospital and relieve me or so Troy can come…. we know that this will be an undertaking by everyone but you know I believe one of the truest statements ever made was “It takes a village to raise a child”.
For our friends far away… I know that you all are SO willing to help because most of you have BEEN where we are going be it with urology, PSARP, or other surgeries. What can you do? PRAY! Call… write… keep me entertained while I am cooped up in the hospital room! LOL If you are going to be in cincy (once we know our dates) feel free to stop by and say hi!!!

Most of all we are asking that everyone join in with us NOW in praying that the PERFECT path be paved toward this surgery. We ask that you would pray for peace for our families and for strength for Troy and I. Pray that Kyleigh’s body would be perfectly prepared for the upcoming trauma and that God would speed the healing process.

Just as we always ask during surgeries we ask that you pray for our medical professionals. Pray for Drs. Alam and Levitt ( and ANY of their staff ) that their lives would be BLESSED. That their families would be BLESSED. That their paths would be made straight and that any stresses in their lives would begin to absolve themselves. Pray that their minds would be clear, that their purpose and intentions would be upright, that they would receive clarity and WISDOM beyond measure to handle ANY surgery, complications etc. that may arise. Pray that they would understand Kyleigh’s issues with pain management. Pray most of all that their hearts and ears would be OPEN to HEAR from us as parents when we tell them things that we “know” because there are times when I cannot REASONABLY explain how I know things… other than divine knowledge… but I do. I know Kyleigh and God has given me a gift to be able to be so in tune with her.. but it doesn’t do much good if it falls on deaf ears…

Start praying now and I know that our journey toward this will be smooth.

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