It's been a long day. I think Kellsey needs a time out. She is WAY over stimulated (which is weird to say since she's stuck in a bed) but she has so many new people in and out of her room, has watched WAY too much TV and has more new toys brought in than she knows what to do with. My mom is with her right now and said that she finally just threw everything off her bed onto the floor and is just done.
And for that matter, so am I. I think I need a time out, too. Maybe Kellsey and I can go sit in a corner and cry together somewhere. Kellsey had her test today with the NG Tube... it was supposed to be this morning, but was bumped to this afternoon. When we finally went down for it, the tech in the room told me the plan was something completely different from what I had previously been told. He said she would be drinking barium by mouth, which I was NOT ok with. Kellsey drinking fluids by mouth can lead to aspiration which can lead to pneumonia. Her getting pneumonia right now would not be good. He argued with me for awhile and I finally told him that she would not be drinking by mouth. Period. He went to complain to the doctor who came in and told me that all they would be doing was putting the NG tube through her nose and down into her esophagus past where the abrasion is and they'd put barium in that way. THAT is what I was told yesterday. I told her that her techs should not be telling parents things that were going to happen if they didn't know what the heck they were talking about. Right after that, the tech pulls out TAPE even though it's all over her chart and on her allergy band that she's allergic to it, and couldn't figure out what I was talking about when I said he couldn't put that on her. @@
THEN the doctor proceeded to tell me that Kellsey would be restrained for this procedure. Um, what?! She explained that ALL kids try to get out from under the machine because it scares them. I assured her that Kellsey wouldn't. She again said that Kellsey would be tied down... that's how they do it to ALL kids. I told her that was great but there is NO way they're tying down a kid who came from an orphanage where she was likely tied down to her bed. Sorry. She would lay there JUST fine. So, she rolled her eyes and said they would have the restraints on stand-by and I told her she would NOT be using them. Kellsey laid there just fine... with someone holding her head and arms still. The doctor admitted I was right. Shocker. GRR!
The good news is that the test showed no leakage, which means no hole has formed in her esophagus. However, the spot where the battery was is really narrowed and still really inflamed. Therefore, she can't begin eating by mouth tonight. On Monday, they will do an MRI and an endoscopy to get a better look at this narrowing and decide if it has to be repaired surgically or not.
In the meantime, they started tube feeds today. However, it's causing some kind of reaction with her. I have been saying for a couple months now that I think Kellsey has developed reflux, but everyone disagrees with me. What do I know? I'm just a dumb mom. Her surgeon who put in her g-tube said that since they didn't do a nissen and fundoplication that there was a chance she could develop reflux. When I saw signs of it and mentioned it, they said they were sure that wasn't it. Whatever. However, the GI doctor said that if they were to do g-tube feeds and it WERE to reflux up to the abrasion, it could make it worse and possibly even create a hole. So they started the tube feeds, she got really cranky and started pointing at her mouth and whining. My mom asked if she could be refluxing and they said no. Hmm.... I talked to the floor doctor on the phone and mentioned my concerns especially because of what the GI doctor said. He said that was fine that they could stop her tube feeds for tonight until I could talk to GI tomorrow. However, now they're all ticked off at my mom. Not her fault. I'm sure I'm being labeled a difficult parent (what else is new?!), but DANG, they're telling me one thing and then saying another! *sigh*
Anyway, I am home for the night with the kids. One more school day this week. Yay! I have been working hard the last couple days on the program for Kameron's school play, and I'm hoping to get it finished up tomorrow morning... we'll see. Please be praying for Kellsey's tests on Monday. Those will decide whether she needs to have surgery to fix her esophagus or not. I assume that her GI doctor will start her tube feeds again tomorrow, but I just want to get some reassurance from her that it's not going to cause more damage than what's already in there. I'd rather wait, leave her on IV fluids and let her heal a little more than risk making things worse than they already are... but again, what do I know? I'm just a stupid mom. Frustrating.
Thursday, April 5, 2012
Subscribe to:
Post Comments (Atom)
Posts
15 comments:
You have to stand up for your kids.. Glad your mom did the same..Get a good nights sleep..
Nancy
Praying..been praying and passing the word around for others to pray!!! So sorry about your day, and YOU are the Mama and your RIGHT!!!!
Jonathan still has a G-tube, and when he got his 1st G-tube they did a fundo because of the reflux issues he had...So, duh all the damage to the esophagus CAN be worse if she does reflux!!! OK, so now extra prayers coming your way for doctors with great wisdom! And a mighty healing for Kellsey!
Sounds like some people need to learn how to read ;). Ugh, good thing you are there telling them how it is. Hey, just remember you being a "difficult" parent is what made them do more testing to begin with. Had they not who knows what would have happened. So keep doing what you're doing! I hope they get their heads out of their butts and start listening to her mother, the person who is with her day in and day out.
Praying for you and your family. This too shall pass :)
When you talk to the GI doc, ask him if this narrowing in her esophagus from the batteries is similar to achalasia, and how surgery would prevent further narrowing.
You have to stand up for your kids. Any good doctor knows that a Mom knows her kids better than anyone else. I will pray for Kellsey and for you. Praying God would continue to lay out the path that is best for Kellsey and for strength for you. So glad your Mom is with you to help out.
I am praying that you and Kellsey and your mom get some relief with the holiday weekend. I am sure that staff will be sparse and you might get some rest.
I wish I could have cloned our pediatrician! (Dr Bill Long in Nashville). He also was known to buck the system at Vandy for us when Ashley had meningitis twice & then when Andrea was diagnosed with Type 1 Diabetes. How I miss him and wish he were a Family Doctor.
Hugs and hoping the best for you all.
Beckie
Keeping Kellsey in my prayers - how scary! Hugs to you and way to be a great mom! Doctors need to remember that moms are their child's best experts!!!
Keeping Kellsey in my prayers. If you are at the hospital that has units downtown and in the north part of the city, be sure to keep on doing what you are doing. My friend had her daughter there a while back for migraines and she was labeled a "difficult parent" but she really did know what was best, as do you!
Good for you Momma!!! Praying for Kellsey and all of her testing, and for healing!
Maan, I'm shocked that the doctors are responding to you that way. I don't know, we've only had one hospital stay so maybe doctors are always like that! I'm sorry you're having to deal with them, while your baby is going through everything. I'll pray she's better soon!
They'll just never learn to listen to you, will they?! I'm so sorry!
Praying right now!
Isaiah 53:4-6 Surely he hath borne our griefs, and carried our sorrows: yet we did esteem him stricken, smitten of God, and afflicted. But he was wounded for our transgressions, he was bruised for our iniquities: the chastisement of our peace was upon him; and with his stripes we are healed. All we like sheep have gone astray; we have turned every one to his own way; and the LORD hath laid on him the iniquity of us all.
My email address
It is not an accident that God gave Kellsey to YOU....you are a wonderful mom, you know your children and you aren't afraid to advocate for them, no matter what. You are amazing. Praying lots for all of you!
Praying for you and your family and for the Drs taking care of your baby girl. From one mother who has been labeled a "trouble' mom to another, stand up for your kids and be assured that when you have a gut feeling it's almost always right over what the Dr's say. We know our children better than they do, I've learned that the hard way. I have a little one that I've been telling Dr's since he was an infant there was something wrong with his stomach. Almost 2 years later turns out I was right. Just took them that long to listen to me. Hugs and you should know you and your mother are awesome! Keep standing up for your babies no matter what they say!
You are an AMAZING mom and don't you forget it. If you didn't stand up for Kellsey, she probably wouldn't be alive right now. Medicine is an amazing thing and I have nothing but respect for the people who practice it. But their medical knowledge often leads them to be arrogant. Your simple, pure mother's intuition is what has come through for Kellsey time and time again. Never doubt yourself when you are standing up for that little girl. (((hugs)))
Post a Comment