JoJo's Condition

Ok so for all of you who do not truly know the whole story about our little boy, Jojo, and are wondering why we are doing all these fundraisers or what I'm talking about when I mention him at times. Here is the whole story:


Ok, so let me start from the very beginning. Jojo was born with gastroschisis (intestines on the outside), right renal agenesis(no right kidney), imperforated anus(in most cases means no anal opening but in Jojo's case he had an opening but just inside his rectum was a membrane blocking the opening which we now think plays a part in what he has) so he recovered fine from all of that the only thing was was that due to the imperforated anus it constricted his opening so we had to dilate it the surgeon would dilate him under anesthesia every so often and then we had to do it at home. Well I was dilating him at home on a Sunday night and noticed that it looked like stool coming out his penis so I stopped and called the surgeon and she said its probably not stool that sometimes they see a little discharge. She said just watch it and make an appt with her at the end of the week. Well Monday I didn't see anymore but Monday night he started running fever that only broke with Motrin so Tuesday I brought him to his pediatrician and she said she was pretty sure he had a fistula(unwanted hole) so she called the surgeon and the next day we were to go see her good thing because Wednesday morning when I got up to get ready to take Jojo to the surgeon I changed his diaper and found stool in the front of his diaper(now not normal like hard stool it kinda looked like really watery grit or cement) so she admitted him to the hospital and the next day they did surgery and what they found was more than any of us asked for all we were thinking was that some how a fistula was created from his colon to the bladder or something well that is the case but his colon is not just one colon its two which is very very very rare so basically this is what they think is going on. The small intestine goes into his large intestine(which consist mostly of the colon) and some where in the large intestine it splits to two colons and one connects to the rectum and the other connects somewhere to the bladder and since the one that connect to the bladder didn't have a hole/way out it got impacted and filled up like a sac and with him straining and all it created a fistula to the bladder. So when they found this they had to give him a colostomy. Now we are trying to get it reversed and the duplication removed or fixed into one large colon and disconnected from the bladder. The only doctors who have really seen this and done surgery on this are in Cincinnati but Jojo's surgeon here doesn't want to refer us even though at the very beginning of this in April of last year she told me that if we wanted to seek a second opinion we could and she would refer us but we decided not to because she sounded confident in herself to do this surgery well as time went on she kept pushing surgery back and back and back so to us it looked/felt like she wasn't so confident anymore and the more research I did the more her words of "I've never seen this before" weighed on me. I don't want my child to be a guinea pig because there are so many things that could go wrong because she doesn't know what she's doing. So back in early November we told her that we were gonna seek a second opinion and she seemed kinda upset well I called her nurse in January to ask her a question and her nurse told me that she(the surgeon I'm not going to name) was writing a letter to medicaid stating that we chose to seek the second opinion its not because she's not capable of doing the surgery. When she has never even done surgery on this condition or seen a patient who has this condition! So since that would denie us to go out of state we decided to go see a Dr at Children's in New Orleans, that Dr hasn't seen it either but he knows the Dr's that we were suppose to see in Cincinnati and has been to one of the seminars that they put on for abdominal duplications he even said they are the best but he also knew Jojo surgeon from here in baton rouge and he asked certain questions I didn't lie to him I told him the truth about everything he asked "Did the surgeon know we were there?, Why were we seeking a second opinion?, ect." So he said he was gonna talk to her and see what she had to say about the case and I guess call me well that was 3-4 weeks ago so I called Tuesday and there wasn't any notes in the chart from him calling her so i could only leave a message for him to call me back but he didn't call so I'm getting really upset about this. We have a lot of people behind us and we are trying all of our options even having the Dr's from Cincinnati coming here to preform the surgery but anything we do will be at our expense. So we are trying to prepare ourselves for any option that comes upon us even if it means that we have to come out of pocket for the surgery and all. I will be putting up Event pages for the different Event that are scheduled for Jojo's fundraiser so please be watching out for the pages and please come and join and help us raise money to get our little one well.

LOTS OF LOVE,
Joey, Brittany, JoJo, and Brenton
(This is a Note from My Facebook page so that I didnt have to type all this again.)

UPDATE!

So a couple weeks after I posted this on facebook I got the denial letter. Big bummer for us at that time. Well thats why I'm thankful for my father in-law and that he's very big into politics in my area, and has some really AWESOME friends. One of his best friends who is I guess you can call him like a medical financial advisor. He deals with people who's insurances mostly medicare wont pay for things. Well he help get to the bottom of everything. Now the surgeon in Baton Rouge still would not see Jojo and her or her nurse has not returned any of my messages since before Christmas of last year('10), but we were able to get another appointment with the Dr in New Orleans. We let him know how the Dr in Baton Rouge was treating us and that the denial was for a certain procedure. He said that the Dr in Cincinnati needs to do that procedure hisself so he is not going into the surgery blind and agreed to speak to a Physician that sat on the Medicaid board and hopefully WOW him with his choice of big words. He said that the best place for Jojo is in Cincinnati but that if Medicaid still denied it that him and his team would take the case. Well obviously he WOW Medicaid because exactly a week later we had in our hands an approval letter. Now it is a waiting game because the Dr in Cincinnati his Medicaid Provider License has lapsed so he had to fill out all new paper work and for a while they were doing it wrong, but we finally got that straight and we should know when surgery will be scheduled by October 31st. :)