Tuesday, March 25, 2008

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

19 comments:

RK said...

Oh my gosh! Pam...it never ends for your family! As soon as I read that they sent you home without showing you how to place the NG, I had a bad feeling. I can't believe how ridiculous people with SO much training can be! I'm not slamming medical people in general, but how do you keep finding these particular ones who don't listen?? Placing the NG is so simple, it would have taken no time to teach you in the beginning...how frustrating!

I'm so sorry you, and of course Rhett especially, have to go through this! We'll keep praying and you just keep being a great mom to those kids!

Anonymous said...

OKAY-THIS IS A BOLD STATEMENT COMING FROM THE ANONYMOUS PERSON IN WISCONSIN- BUT I THINK I'D BE PURSUING LITIGATION...if you haven't already. Your story is amazing and it's good that you have such strong intuition! My husband is a veterinarian and thankfully, because when Wyatt was born, he spent two weeks in the NICU and at least my husband could talk the talk and ask the right stuff. Sounds like you know more than the healthcare providers. I read your blog daily and it keeps me in check, and it makes me feel awful for yoou, little Rhett and your family...and I don't even know you.I'm not sure my feedback is very helpful for you but know that there is care and concern for you here in the cheese state. JAyne in Hilbert, WI-
I'm not anonymous anymore.

LeeJo said...

Hugs to you all. Praying for every blessing for you!

Kari said...

*SIGH So Happy to see an update!! I felt like I was holding my breath! I'm happy your home and so glad you were given the chance at least to learn the NG yourself AMEN Mommy knows best for sure!! Especially super PAM Mommy!! Your in my thoughts hun and I hope Rhetts recovery goes smoothly from here. I noticed you wrote he is eating Ice cream. I'm not sure if he is able to munch on watermelon but for T that was his savior. Just an idea. I have no clue if Rhett is there :(
(HUGS) and prayers Always!!!!!!!!!

Kari said...

BTW Pam can you send me your e-mail??? I have some thoughts but e-mail is better. Mine is carwithe_aka_lildevil@hotmail.com

Michelle said...

OH MY GOODNESS!!!! I just hope Rhett is okay. And you - I hope you're hanging in there, too. What a scary experience.

I'm SO GLAD You are at home - I hope you can stay there.

Give Rhett a big kiss from us!

Niksmom said...

Sweetie, what a nightmare you have been through! I've been thinking of you every day and *knew* the lack of an update wasn't good. If i lived close enough I would come and give you a hand and a break! When I read about the whole tube fiasco, I got so mad I wanted to spit nails at the hospital staff that even DARED to send you home like that. It's not like Rhett is some totally healthy kiddo who just came in for a quick little tonsillectomy! GRRRRR...my mama-bear is all riled up for you.

I know that's not going to help you but...just know that you are NOT, NOT, NOT alone in your frustration.

Sending you oodles of love!

Emily said...

Oh how I wish you were kidding about all this. I can't believe a nurse would tell you to not worry about him pulling it out. I mean, seriously who knows Rhett better? You should receive a nursing degree from all you have had to learn!

I truly admire what an amazing mom you are, lots of hugs...

Kaden and Ava's mommy said...

Oh my gosh, I am frustrated for you. I can not believe that nurse thought a toddler would not pull a NG tube out. Um...hello!!!! And then on top of that to have somebody place a JG-tube after specifically telling them that it should be a G-tube. I think you should definately let them know what they did, and the pain that Rhett went through because they failed to LISTEN. I hope you all have a better week...you all deserve it. Sorry you guys had to go through so much.

Love, Amy

Marla said...

My heart is breaking for you guys. I can not believe they put the tube in wrong. Moms know best. I can't imagine the anger at the hospital and exhaustion you are all feeling right now. Hugs and praying extra hard for you all.

Michelle said...

Wow - you and Rhett have been through way to much in such a short period of time. Prayers continue for you!! Matthew is praying for his buddy too.

melody is slurping life said...

I'm praying for Rhett and your family. What a little superhero you have there.

Karyn said...

I found your blog through a link on the downsyn forum and wanted to let you know that we are praying for Rhett. I too was worried that they didn't show you how to place the ng tube. My daughter had an NG tube for 9 months and used to pull it out all the time. It isn't hard to put in once you know how but our local hospital wouldn't do it either. I learned how to straight away because I knew she would pull it out at the most inconvenient times and I was right.

I hope he does well with his bolus feeds and recovers quickly from his surgery.

Karyn
Australia

~Melissa~ said...

Wow - that is just awful for you. :( I just feel so bad that things just can't go smoothly. I am glad that you are all home and I hope his recovery goes well from now on!

little.birdy said...

Oh man...poor little guy. That breaks my heart. I hope he feels better soon!

The Bryant Family said...

OMG, when I read that they didnt show you how to put the NG down....come on, a toddler not pulling at stuff hanging from his nos. I could have walked you through it. :) It is tough when the squirm the way they do. We finally had to do a G tube because Tucker pulled it so often and his little face was in such bad shape.
I am sorry about all the trips back and forth. Just when you think it could look up then something else. I am glad you are home. I am going to post something on my blog about donations. Hang in there. I will say extra prayers.
I read that you had Rhett blessed.? Are you LDS? I am currently "inactive" with all the illness I cannot attend most times. Just a question...dont have to answer. Tucker has had many many blessings. I

Tommy's mommy said...

Pam,

Ditto from RK's post. Unbelievable that you had to go thru all that for a simple NG tube. You and your family are amazing and an inspiration to my family. We read Rhett's blog daily. And now that we have your PO address, expect a box from Bellingham, WA! :)

In our son Tommy's 'medical' backpack we carried our NG supplies for the 10 months that he had one placed. Up to four times a day he would remove it and I would replace it. Now that he has a Gtube, things are less worry-some, at least where Tommy's lungs are concerned. I have less chance to drown him now.

I think of your family everyday. I am glad that Rhett is doing well in spite of all these hassles.

Megan said...

Oh my gosh! How frustrating!! It is sad that Doctors and nurses are supposed to help save lives.... but make so many mistakes!! It is unacceptable. They make enough $ to take better care of our kids.

I know there are good doctors and nurses out there (we had some in the PICU) but I also met a lot of the not so great ones...

You are Rhett's voice and I think you are doing a fine job at it!

Poor little guy, I am glad Rhett is feeling a little better.

Damama T said...

Hi, honey. I've been keeping up via my cell phone while we've been out of pocket most days, but can't comment from there. so I'll just do a quick catch up here.

I'm so glad he's coming around and actually did will through all this crap.

Please, PLEASE, if you don't want to file a lawsuit, at least report the idiots at that ER to the proper medical authorities. They should be slapped with a huge fine or something! Plus, thereis NO FRIGGIN' WAY you should have to pay for ANY part of that visit. DO NOT LET THEM BULLY YOU INTO IT!

I'm so spitting mad over this whold mess that if I had the money I'd get on a plane and come stay up there to help advocate for you until Rhett is old and gray! GRRRRRR!

Much love and unceasing prayers.