Home & Crawling

All it took was for us to get Robbie home and he has just taken off crawling everywhere. He had been looking like he was going to crawl for quite a while, but finally figured it out and is now going everywhere. He is still doing really well after surgery and you wouldn't even know that it was Monday that he was in the O.R. for 90 minutes. We are so grateful for the great surgerical work of Dr. Levitt and his team to make a new poop hole for our little guy.

We go back out to Cincinnati on January 7th so Dr. Levitt can see him again and start to do the dialations. If everything went as Dr. Levitt planned, the most painful part of this procedure, the dialations, should be a lot easier and less painful because he was able to make the hole big enough.

It has been great being back home and starting to get into the groove of things again. We are here for a few days then head out to New Jersey and Mimi's house for Christmas.

GETTING DISCHARGED!!!!!

Dr. Levitt came by this morning while I was taking Mimi to the airport and said that we were getting discharged today because everything went so well yesterday. He had mentioned it yesterday, but thought everything was good to go, so they are currently working on the discharge papers as I write.

For today we will stay here in Cincinnati at the RMHC so we are close to the hospital in case something would hapen. We will take off tomorrow at some point and drive halfway, probably the Illinois side of St. Louis again so Robbie doesn't have to be in the car too long. This should put our return home on Thursday afternoon.

Robbie is doing great and if you didn't know you would have no clue he had major surgery yesterday, what a trooper. We are so happy to be heading home and now it is just taking care of the little guy and making sure he is comfortable. Thank you for all the prayers and support, we can definitely feel their powers here in Cincinnati.

SURGERY IS COMPLETE

Robbie is out of surgery and in his Mom's arms right now eating a bottle. He is resting very comfortably and seems to be doing really well. Our last few days have been nothing but confusion and disorganization so to have Dr. Levitt tell us how well surgery went was an absolute surprise and relief. Robbie's surgery was scheduled for 7:30 a.m. and was not allowed to eat anything from midnight on. At 7:30 a.m. they came in to let us know that surgery was pushed back to 8:45 a.m., only after we asked though. At 8:45 a.m. we were still just waiting to be transported down to the O.R. Finally, around 9:00 a.m. we left for the O.R. and at 9:51 a.m. they made the first incision.

The surgery was scheduled for 3 hours so we had time to go get breakfast, lots of coffee and a chance to talk to some other patients that are staying in the RMHC House while we waited. About 11:00 we headed back to the waiting room and within 10 minutes they paged us to meet in a room with the nurse. We were both very nervous but Mimi remembered them saying that about half way through the surgery the nurse would come out and give us an update.

To our surprise though, Dr. Levitt came into the room and said that everything went better than planned and that he was done with surgery in about 90 minutes. The rectum was lower than he had planned, so it was easier to pull-through and that his butt muscles were so good that he was actually able to make his new butthole big enough where we won't have to do the entire process of dialations (which is supposidly the worst part of the entire process, pain-wise). Instead, he was able to make the hole the size he wants it to be so we just have to maintain that size and the pain level won't be near as much.

So now that he is all fixed up, we just wait for him to heal and have the opportunity of coming home even earlier than planned. We aren't going to count on that, but he said there would be a chance of being discharged tomorrow and be on our way home Wednesday.

Thank you to everyone that was thinking and praying for Robbie's safety and that he would have all the right muscles and parts. Once again, the power or prayer is an amazing thing.

Interesting Day

So about 9:30 this morning we got a call from Radiology to be there at 11:30 a.m. for his MRI at 12:30 p.m. So we had to change our plans of heading to the Outlet Mall and get him ready to go for th MRI. While we were waiting for the MRI to be finished the Ronald McDonald House called and said we were able to check in with them today. Robbie came out of the MRI around 2:00 p.m. and we went back to the hotel to pack up again and head over to the RMHC. We got all the paperwork done and were taken on a tour of the facility and just got things unpacked and going to head down for dinner.

The weather is starting to change here, as it's raining outside and will turn to snow by tomorrow morning. We hopefully will beat the weather in the morning as we check in at 9:00 a.m. The good thing about this RMHC is that it is right across the street from the hospital. So, even though plans got changed, it was an overall good day and Robbie is starting to feel like himself right again.

Meeting Went Well

Our meeting with Dr. Levitt went well and he was a very nice guy. He was able to look at his xrays and images along with a quick physical exam and gave us some positive news. He said by just what he could see from what was in front of him, that Robbie had a good, deep butt crack (which is good in these cases, guess Dad's big butt helped on this), and that his muscles in the anal area seemed to be good. When he looked at the xray he could see where the colon was and thought it was in a good spot to pull it through. The only concern he had was that there was a gap between his pelvis and femur that is somewhat common in bladder exstrophy patients because of the way the pelvis doesn't completely fuse together. He wants an MRI of the pelvis just to make sure that this gap just has a fatty tissue in it that can be removed before he gets in there and has to figure it out then. Again, this is common in exstrophy patients and shouldn't be a big deal.

We check into the hospital on Sunday at 9:00 a.m. (EST) and the MRI will be at some point during the day. Surgery is scheduled for Monday at 7:30 a.m. We are so grateful for all the prayers and thoughts for Robbie and just ask that they continue for a very successful surgery. If all goes as planned, we will be able to return here in 6-8 weeks, or after basketball season, and get rid of his colostomy bag and have to worry about changing poopy diapers.

As far as his bowel management goes, if everything goes well with the surgery and he is right about his assumption of Robbie's case, he thinks that he will be able to control his bowels, but will just be a little delayed in the time that he does this. We are praying that he is right and that Robbie will be able to poop whenever and wherever he wants to. More updates will come as we get them, but we are just anxious to get the surgery started and get Robbie on the way to a "normal" life.

Tomorrow we have some friends who Dr. Gearhart (Johns Hopkins) put us in touch with from Louisville, KY coming to visit us here in Cincinnati. They have a little boy who has a very similar case as Robbie and have helped us a lot in understanding what is going on with both the bladder and anus. It will be great to see them and see what we have to look forward to. He has had both the anus fixed and the bladder put away and is doing great. We really look forward to seeing them tomorrow and introducing the two boys.

Dr. Levitt Meeting

We got a call last night and we will be meeting with Dr. Levitt at 5:30 p.m. today to go over what the plan is with Robbie. The nurse on the phone said that they have never cancelled a surgery before, but that each patient just has a different bowel management program that they will be a part of. The meeting today will just inform us on how all the xrays and pictures looked and what he thinks will be the best way to fix up our little guy.

Mimi gets into town this evening as well, so Robbie is really excited to see her. Today we might go to the Aquarium which is really close to our hotel, we will see how that goes. We switched to an extended stay hotel yesterday because the waiting list at the Ronald McDonald House is pretty long and they thought it might not be until later next week that we can get in there. We just need a room with a refrigerator for his medicine and it will be nice to not have to eat out all the time.

Testing Is Complete

It took a little while to get back there, then the test took some time but Robbie was such a big boy and now the tests are done. They took some XRays of his stomach and pelvic area and then did a Colostogram. This test was done by injecting contrast into his mucous fistula to see what his colon looked like. The radiologist said that they got good images and will get those to Dr. Levitt today. After the colostogram is where there was some confusion on what the next step in the process would be. We didn't know if we were done or when we would talk to someone about surgery. After 45 minutes and Saree talking to a nurse in the colorectal unit, we are now waiting to see when we can meet with Dr. Levitt and he can go over Robbie's case, hopefully prior to checking in on Sunday. I guess if we don't hear anything before Sunday, we will check in and just wait to talk to him then. Right now we are still waiting to hear back from the Ronald McDonald House too. Looks like we have a Thursday of just hanging out in town and trying to catch up on some sleep, if Robbie will let us. More updates will come as soon as we find something out.

We Made It

The drive to Cincinnati was really pretty easy and we rolled into town exactly during rush hour. We got right to the hotel, after a 30 minute stay in traffic, and got everything into the room and will try to make it feel like home until we hear back from the Ronald McDonald House. We are on the waiting list and hopefully will get in there soon. Tomorrow our appointment is at 10:45 a.m. and there are two tests that they will do to see what the next steps are in the process. We will make sure to let everyone know what we find out as soon as we know.

Loading Up The Wagons For Cincinnati

We are going to load up the car tonight and head out to Cincinnati. We are hoping to get through St. Louis tonight and take it the rest of the way tomorrow. Robbie's appointments are Thursday morning and with the weather Cincinnati is getting we want to make sure we have time incase the snow is bad. Robbie has two tests scheduled for Thursday to determine if we have surgery and what type of procedure they will use. Between the blog and our Facebook accounts, we will make sure that everyone stays updated on what is going on. We are very grateful for all the prayers coming our way, we can definitely feel them surround us in our lives.