Sorry for the Lack of Updates......

Things have been so extremely crazy. So we were discharged on Sunday evening from the hospital after the NG tube was placed and he tolerated two feeds. I asked them about needing to replace it, and home health, and the nurse said that as long as I knew how to feed him we would be fine. He should only need it for a couple of weeks and it was a "huge hassle" to set up home health care so she was just going to send us with some syringes, and a few cans of pediasure.

Andy and I both told her that he would rip it out. She said, no he has left it alone he should be fine. So. We get him in the car, and since we have both vehicles, Rhett is in the back of our Durrango alone......with wandering hands......

Before we were halfway home he ripped out his feeding tube. I am exhausted and almost out of gas, so I think well I will just stop by the small town hospital in our county and have them replace it, no big deal. We get there and they don't want to touch him, so they send us to the bigger hospital that's about 15 min away. We get there, and they tell me that he has to have another IV put in. All of his veins are shot, so they put it in his forehead.

Then they tell me that they are going to have to sedate him to get the feeding tube in. This should have been my warning sign to just take him back up to the children's hospital but I was so damn tired and frustrated, and we were so close to home.

So they tell me that they need to take him back to Radiology to place it. When I ask them why, they say because they don't do them on kids very often, and they want to make sure that it is in the right spot.

So Rhett is screaming, he looks like he's had the snot kicked out of him with all of the bruises all over his body, because every time he blew an IV in the hospital it took 5 people to hold him down to get a new one in, and he still fought like crazy. He has an IV sticking out of his forehead, and it's leaking blood everywhere because the cap wasn't on tight, and his face is bleeding from all of the sores that he has from the tape on his face.

Well when they told me radiology, my mommy flag went off, and I asked them you aren't trying to do an NJ Tube are you? No they reassure me, it is an NG. I tell them ok, because we are doing bolus feeds and not continuous feeds. So we want it just in his stomach not his intestines. They send him off to radiology and he comes back with his tube placed.

We leave the ER take him home and give him his Loratab that is long over due, and feed him. Within 5 minutes after his feed he throws up some bright yellow gunk. But not any of the 4 oz of pediasure that I just gave him. They kept talking about putting a dye in him in radiology, so I am thinking maybe the dye didn't settle right and he threw it up.

All night he is rolling around acting like he is in pain. I give him more Loratab, but don't feed him anything until 8 am the next morning. Again after his feeds and meds, he throws up the bright yellow gunk. This time I realize it's stomach acid. So I start thinking of how weird things seemed to me in the ER, and I know something is not right.

I think that maybe he just needs a smaller amount of feeds so at 12 pm I give him just half of what he is supposed to get. 10 min later he throws up the yellow gunk again. By now I have put in a call to the ENT and his regular Pediatrician. They both feel like something is wrong, and I am pretty damn sure that the hospital placed an NJ tube down into his intestines rather than an NG in his stomach.

So when I am giving him these big bolus feeds of 4 oz at a time it is backing everything up in his intestines, and causing him to throw up his stomach acid. Which is increasing his chance of bleeding, and is just not good all the way around considering that he just had major airway surgery.

So back up to the children's hospital we go. This is our THRID ER visit in the less than 24 hours since we had been discharged. The ER is PACKED with kids who are really sick and carrying around throw up bowls, and coughing their heads off. NOT where I want to be with a child who has just had surgery.

We finally get back in a room and I tell them what is going on and voice that I am very concerned he has an NJ tube rather than an NG. They send him down to X-ray, and I go with him. As soon as the picture pops up on the computer I am now positive that it is in the wrong spot.

So we go back, the Dr. comes back in, says it is a beautifully placed NJ tube, but should be an NG.

DUH.

This time I put my foot down and tell them I am NOT leaving the ER until I have placed his feeding tube, and I know that I can do it at home. There is no way in hell I am going to go through this again. It is so unfair to Rhett. Hasn't this kid been through enough medical mistakes already?!?!?!?

So I placed his tube, and learned how to make sure it was in the right spot, all that jazz, and we finally got home about 10:30 pm.

Today so far has been pretty mild. He has eaten some ice cream, but doesnt want to suck on his bottle. So we are keeping up with his feeds, and meds through his feeding tube.

He has been going 6 hours in between pain meds, which is better than needing it every 4 hours. I expect things to get worse again the next couple of days though, as they say he will regress before getting better.

He also has been sporting a low grade fever and diarrhea, and Chloee is very sick right now. The fun never ends around here.

I have had alot of emails asking what people can do to help, and what our address is. Right now we could really use gas cards as we have spent almost 200.00 in gas going back and forth to the hospital and all of the ER's. All of our follow up appointments are up at the hospital as well, and we live about an hour and a half away. Since we have a P.O. Box I am okay with posting our mailing address as well.

Pam and Andy Bird
P.O. Box 731
Springville, Utah 84663

People have also asked what Rhett is into, and what movies he likes. He is a big Sesame Street fan, especially Elmo, and he loves cars and any type of toy that makes noise and is flashy. There is also the donation button at the top of the page in the side bar.

Please know that we do not expect anything, I just don't have time to answer each email individually. We are so blessed with the outpouring of support that we have. Thank you everyone for keeping us in your prayers. Prayers are the very best gift that we could ever get.

((HUGS))

The Bird Flock