I normally just blog regular stuff instead of blogging things for comments, but Jedd is really ill.

For those of you who may not not my son is tube fed through a tube surgically placed in his belly. He has severe reflux and will not eat by mouth enough to survive. He has become the last 2 weeks willing to take some fortified formula by mouth, which is a miracle.

I posted this on a message board I am part of earlier today. It is 9:30 at night here. So he is asleep and doing a littel better. He still is only getting water and peidalyte all night long form his feeding pump. So this is pretty bad for him. A regular stomach bug for other children can land him flat on his but for 2 weeks. So we really need him to get over this fast.

Here is the post........

Jedd just got over a nasty bug. I didn't even get him back to full rate at night from his pump and now we are headed back into it again. He has had bad nasty diapers alot today about 8. He is vomitting continually. He takes some in orally and then about an hour of less later it comes back up.

OKay I had to stop because he vomitted agian. He is not dehydrated yet, but I am keeping an eye on that. I have gotten very good at it since he does vomit so much.

The bad thing about the vomitting is he will retch and gag so bad, his whole face turn red and almost blue from the gagging. His body will continue to gag and retch until he is totally empty and he dry heaves.

When he does get ill it affects him 10x's worse because his motility is already very bad. When ill his stomach almost comes to a full and complete stop moving no food at all.

We really need him well soon. He has to come off all meds on Mar. 5th. That combined with an illness will not be good. Let alone we need him healty for his in-patient stay from Mar.10 to the 14th. I alsdo have to fly there with him on the 7th.

We just really really need him well...A.S.A.P. THANKS:)~

I am soo frustrated. Jedd fell and hit his face smack dab on the floor. Hi sucker slammed up into his mouth and he tore the little piece of skin that attaches from his lip to his gum on the inside. OOOOWWWIIIEEEE!!!! Boy did he yell and scream. I can't blame him, it hurt and bled soo bad.

I brought him to the ped. and told the desk what had happend and asked if a nurse could come out and look at him. She freaked out and told me to take his across the hospital and to the ER. So I thought OK, it must be worse than it looks.

I brought him there, checked him in and got him checked at triage. I asked if he would be fast tracked. I was told yes he would be. That means he gets bumped to the front of the list to get seen. We are sitting there forever. People whose children have a sprained ankle, conjunctivitis, all who came in after us, are getting brought back in front of us. I asked serveral times, Are you sure he was fast tracked? I am asured he was.

I have to beg them to let me feed him, there are other children eating in the waiting area eating but I am continually told Jedd CAN"T eat. He was supposed to eat at 12:00, by 1:00 I tell them, I am going to feed him you better get someone in here who will tell me yes. You see, he had taken his meds. at 11:30 in order to eat at 12:00. The meds. can make his belly crampy if food is not put into it. They let me feed him. I was going to do it anyways, they don't need him empty to see him for what was wrong.

By 2:00 I am ancy, they finally call me back, YEAH, to the NON EMERGENCY side!!!!!!!!  There are only 5 rooms over there. They had me waiting all that time to go into the ER only to be wrong. Jedd had NOT been fast tracked. That means they looked at his chart and deemed it a NON emergency. IF I had know that I would NOT have stayed I would have come home!!!! So now I am not happy!!!! I get back to the room. Call my Mom tell her I am coming home. Go pee and tell the ladies at the desk in the back, oh by the way I am going home.!!!!!! The only reason I stayed was becasue the nurse at the ped. freaked out so I thoguht it was much worse than it was. And then the triage told me Jedd was fast tracked, that meant they believed he was an emergency. So I wasted 3 hours at the hospital for nothing.....

Now  his poor mouth is sore..... Hopefully it will heal quickly and will not affect his eating since he has been doing so well.

On a bright side. We saw Dr. McHaffey on our way to the ER. He remembered us. I forgot his name and called him by one of the cardiologist.... Dr. McHaffey is the general surgeon who placed Jedd's gastric feeding tube. It was nice to see him again.

Okay so the Heavens have parted again and Jedd has decided to eat. Not sure WHY??? but I'm not going to complain.....really.

He's not eating food but boy is he chowing down on his formula like a big boy. He takes it out of his Sally Beauty Supply hair color application bottle, and NO they don't sell these at Wal-Mart....LOL His OT gave it to us. The top is cut down and fish tank tubing is used for the straw. YEP, fish tubing.....The plastic is soo soo thin on the bottle, he barely has to suck and the formula will rise to the top.

He did soo well today that if I wanted to I would not have had to use his tube. I still did, to top him off a little. I am super fortifying his formula. For every can (8.25oz.) I mix in one whole packet of Carnation Instant Breakfast. This adds 130 extra calories and of course the protien he needs. He doesn't do well reflux wise with meats....:) They come back up fast. It makes each ounce worth around 40 calories. So that is good.

So, we are just going to enjoy this while it last....

We were able to buy tickets through www.skybus.com for very cheap, check them out. They are a no frills airline that has limited flights. Fortunately for us they fly out of Richmond, VA and into Columbus. Just where we need to go!!!!! YAY!!!!!

For 2 round trip tickets including fees and taxes it will cost a grand totaly of $202.00 for both now!!!! We could not drive for that cost not to mention driving would take 12+ hours. Mom and I was excited. She bought the tickets tonight. Now I am working on getting waivers to bring Jedd's medical supplies on the plane and through TSA. The GI will give us a letter and we should be all good. I am having the Home Health Co. send some supplies via UPS to the Jedd's Mom and Dad's. That will make it easier.

The time is drawing close and we are excited. Well, as excited as we can get to have Jedd off all meds. and poked and prodded for a week. It's all a means to an end though. We will get invaluable information from this. It will be soo worth it.

Pray for Jedd. He will come off of all meds. on Mar. 5th. That moring I will not be allowed to give him anything for reflux or his delayed emptying.  We can do it though!!!!

OK this is gross....LOL

So we all know how most reflux childrne LOVE water, well, Jedd NEVER gets water because, well, his volumes intolerance won't allow us to do between tube feeds.

So, He has discovered the toilet, yes the toilet, OH it's full of ssoo uch water...right....

Well, I have cought him serveral times taking his pacifier and you guessed it,.....rubbing it in the toilet water and then sucking all the water off of it and then repeating the process.

OH it's soo disgusting....... We keep the lids down but if we forget, he is right there, little vulture......

  For the past 2 nights Jedd has not kept barley anything down at his pump feeds. It is just one continuos vomit after another about 45 min. apart. Needless to say, I am TIRED!!!!

In all this I have had some very BIG papers due for my Masters' program, thank the LORD I have been able to keep up. I did have to DROP my next class :( I didn't think I would be able to keep up with the work load with how sick Jedd is going to get when he comes off meds. on D-DAY!!!! (March 5th) We are dreading that day BTW!!!!!

Anyways it started on Thurs. with him not tolerating his boluses very well and it continued from there. He is currently on watered down formula overnight to try and just keep him hydrated. He has a HORRIBLE cough, a runny nose (clear), and a fever. This morning his fever peaked at 102.7, it would probably gone higher but Jedd was upset and kept peeing on me so I stopped.  If he keeps this up through tomorrow I will call the ped. and see if he can get in for a sick visit just to check him over.

Friday and today he kept down boluses very well, I have been giving him less volume, today he vomitted once at his last feed.

We have just been giving him Benadrly to dry his secretions and Tylenol and Ibuprophen for the fever. I did break down and use his nebulizer 2 times today in an effort to help loosen his cough and get up some of the junk he seems to have in his chest. I haven't had to use the neb. in over a year almost. Poor Boy it scared the devil out of him, as soon as he saw it. We think it reminded him of the OR mask they use to gas them out for procedures, he used to like the nebulizer but not today. For his 2nd treatment, I was prepared. I swaddled him tight and held him good, he gave up and almost fell asleep while I did it, I was able to get in the full 20 min. with the mask on his face the entire time, that was a HUGE blessing. It seems to be making a difference in  his coughing for sure. I also did some chest PT on him to loosen up his lungs some more.

Right now he is running (slowly) aorund the house  in a green St.Patrick's Day shirt that says, "You're So Lucky I'm NOT your Kid" It is HUGE, a 4T, but I could not help myself, it is hilarious!!!!!! So true, so true!!!!

His fever seems to have broken again because of the tylenol I gave him a few hours ago. I think I am going to just set a clock to give him some in the middle of the night to help keep that fever at bay.

Hopefully this will pass quicly and stay away. I can't imagine dealing with this and having him off all meds. at the same time. UGH UGH.....

I'll Educate You ALL!!!! :)~Here's the short versions of each test:

Impendance probe: it's like a ph probe except the NG like tube that will be placed in Jedd's nose will have monitors on in all the way up his esophagus. It will record and measure the "reflux" that comes up. Not only that is can tell whether it is acidic reflux or just reflux. It will tell us by the PH scale.

DGE Scan (Delayed Gastic Emptying Scan): They will use Jedd's G-tube to "fill" his belly with radioactive nuclear material mixed into food. He will be layed on what loos like an MRI table and moved under the scanners. He well stay there for an allotted amount of time (normally about 30 mins). He will be strapped with a harness to the table for this. After which we will be allowed to move about the hospital but must return at a specifid time to have him "scanned" again. This scan is normally about 1 min. Each hospital is different about the times, this is how his liqud study DGE scan was done here.

Antro-Duodianal (AD) Manamerty testing: They will put a finger like NG tube into Jedd's G-tube. It will stay in place for 24 hours. It will placed under anesthesia because the "fingers" must be moved to different parts of Jedd's anatomy. Normally, stomach places and part of the intestines. The machines will record the contractions of Jedd's stomach and intestines as it tries to digest his food. He will have to be empty for a certain amount of hours, sometimes they also try different motlity meds. to see how the stomach and intestines will react. That way we can see exactlly which one works the best. From there they will move to FOOD through the G-tube to see how well the stomach and intestines work toegther to contract to pass the rest of his food through.

The AD Manametry testing is for his DGE. This way we can see exactlly where his Motility problem lies.

The hard part is there is really NOTHING they can do for the dysmoltility :( except meds. But at least it will hleps us to better medically manage his vomitting. It will also allow us to go slower with his feeding therapy. It it is found that Jedd has VER BAD motility as we suspect then he won't be able to take in enough calories orally to gain, because he will need supplimental formual at night feeds for a while.

It will just be GREAT to get some answers at least KWIM???

  OMGosh I can't believe this!!!! Nationwide Children's just called, they have discussed Jedd and all of his case and they want to see him ASAP!!!!!! I really can't believe this!!!!

We will be in-patient for the first day on March 10!!!!!! Jedd will need to be off all meds. about 7-14 days prior to the 14th that will be the hardest part. I am already to break out the pump 24 hours a day, I know he will need it but I can do it!!!!

On Monday they will do a PH Impendance probe, Tuesdays will be an off day. Wednesday they will do another DGE scan but this time on solids, and Thursday will be out big day, Jedd will have is AD Manametry study done!!!!!

We will stay in-patient the entire time. I don't think I will be able to sleep...... SO Now I have to re-schedule Jedd's hypospadias surgery.....LOL They just moved it up earlier to the 14th and obviously we won't be home now LOL. I already have the call into urology to have it moved back to April1st.

He will also be seen by their SLP doctor for feeding as well while there. That way if we ever want to return there fo rIntense Feeding Therapy they will start the ground work during that week!!!!

I AM BEYOND EXCITED, I never though they would get him in this early. They originally told me the end of May early June.....

Let's all say it ALL together now.......
GOD IS IN CONTROL!!!!!!! GOD IS IN CONTROL!!!!!!!