Our So-Called Life.

There is an upcoming show on Discovery Health called, "My Deadly Appetite."  "Born with Prader-Willi, a rare incurable syndrome, Will feels starved constantly and has bouts of physical aggression. At 280 lbs and kicked out of school, an intense inpatient treatment program hundreds of miles from home may be his only hope." It is airing on Discovery Health this Wednesday, November 3, at 10pm. Sounds like Will is one who is more severely affected by PWS, but his story is an important one to tell. We have no way of knowing where any of our children will be on the spectrum of this syndrome, and we're all in it together. I always have mixed feelings about these kinds of shows, because I'm not sure how they'll portray the syndrome or the person with the syndrome. But I'll be watching. Join us!

It has been a while since I posted! I have been incredibly busy!!! While my main focus has been on Cade the past 5 months, I can't forget my Carter. He will be 3 years old tomorrow! I just don't know where the time has gone...He is a big boy now and so independent! Ahh, Bittersweet! So, we had our follow up in BR yesterday with Cade. The pulmonologist was very impressed with the difference in Cade's tone and alertness. He can tell what a difference the nutrition has made for his total wellness. He also reviewed the sleep study results again with me and stressed the severity of his obstructive sleep apnea. He said that if Cade was a "typical kid" and he had that bad of a sleep study-he would automatically say he would need an alternate airway...as in Tracheostomy...But good news is he is not "typical" and he will grow out of this! That just gives you an idea of how bad he is obstructing while sleeping. The pattern is that as the tone improves so will the ...

So, the inevitable happened. Cade's feeding tube was pulled out Monday. He is on continuous feeds..which means...he eats for 20 hours a day and can be off for 4. So, I knew I had a 4 hour stretch before he needed to eat again. I thought it would be just as simple as going to the ER and getting the tube put back in. Not so much. Little did I know that no ER in Houma or Thibodaux would put it back in. Cade has a TP tube which bypasses the stomach and goes straight to his small intestine. It has to be verified with x-ray for placement after being put in. It really is not that big of a deal to put in! It is put in just like an NG tube besides the fact that you push it a little further with a syringe and take an x-ray for placement...Voila! I could do it myself! So, from now on if and when the tube comes out again we have to go to a Pediatric ER. Children's Hospital or OLOL. Everything is fine now though! The tube is a bit of a pain, but it is not SO bad. Cade is still happy and th...

These are some pictures from the Hospital... He could not figure out what that was on his arm Watching the LSU game! Playing with his IV again He had a mobil for his crib and the nurses brought him a Build a Bear Home and Happy! This was right after his tube was pulled out... (I had to hurry and get a pic before the tube was back in)

Well, after being in the hospital for 8 days and nothings getting accomplished, we are home. The doctors here just kept insisting that without the Nissen procedure and just getting the g-tube Cade would still aspirate and reflux. With that being said I was not putting Cade through surgery for something that would not fix the problem. Dr. Miller did not want the Nissen and I trust her 100%. I know these doctors here know what they are doing and are very experienced, for a typical child.  Dr. Miller knows PWS, they don't here. That just makes such a huge difference. So, we are home with the NG tube for now. The doctors seemed to think that it was OK that we wanted to come home and make our decision. The pulmonologist did not like the idea because of Cade's obstructive sleep apnea, he did not want something else obstructing his airway. I don't think we have much choice at this point though, so Oh well! He also sent us home with oxygen at night for Cade. The whole idea of that...

I thought we had somewhat of a plan in place, but no. Doctors here are stuck on doing the Nissen along with gtube. There main concern is aspiration and even with gtube inserted Cade can still aspirate and reflux. It sometimes makes it worse! Dr.Miller says not to do it, these doctors say to do it and here I am not knowing what to do. One big difference...Dr.Miller KNOWS PWS, these doctors DON'T. They are doing the protocol for a "typical" baby. At the same time though what these doctors are saying does make sense and that is why I am confused as all hell right now. If that even makes sense. I am so dead set on all Cade's care being done in FL...I think I need to move! (Yeah right) Someone needs to get it together or we will be out of here AMA!!!

On my phone again...Ok, so I will try again to fill everyone in. Lately things have been goin rather slow around here. Doctors have been consulting with cade's doctors in FL to come up with the best possible plan for Cade. So, it is ok that things are taking a while. I would rather everyone be on the same page rather than rush into surgery. All the doctors here arw being very thural and making sure things are done right. Dr.Miller does not want the Nissen procedure done because too often she sees patients not being able to control their blood sugar after. On top of PWS she does not want to have to worry about blood sugar levels dropping(and neither do I)! So, the G-tube will be done and we will control reflux/aspiration with max reflux meds. Results of sleep study have also been being discussed. The pulmonologist described Cade's sleep study as "off the charts" He has severe obstructive sleeo apnea. A typical baby obstructs about 2 times per hr and Cade was ib the 70s...