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Rachels
12-18-2002, 08:44 PM
Well, things suck. The hospital called today to tell me that the radiologist had looked at Abigail's x-ray and thought that the original ER doctor missed something. (Shocker.) He thought there was a chance that her intestine is -- or was -- twisted a little. Miserable and painful at the least, dangerous at the worst. Of course, I got this message after we left for the holidays, so we are in NC with no doctor. Abigail's ped said she needs a barium enema and another x-ray in the next 24-48 hours. If she does have this thing, she will have to have surgery. Keep in mind that I was dissolving into a useless puddle when all she had was JAUNDICE. I'm very scared, very upset, very furious that the ER doctor missed this on the x-ray (and have complained mightily and am undecided yet if that is all I will do), and so sad that my baby has to endure even the tests for this. And, of course, there is the major hassle of finding a way to get it done since we are eight states away from her doctor. Yikesyikesyikesyikesyikes.

-Rachel
Mom to Abigail Rose
5/18/02

egoldber
12-18-2002, 09:43 PM
Oh Rachel, how terrible!!!

If there is one small blessing in all of this, hopefully you have now found the source of all her tummy ills. And even though surgery is traumatic for mom and dad, babies usually respond very well and heal very quickly. And afterwards she will feel SO MUCH better!! Just keep that in mind.

Hope all goes well!

blnony
12-18-2002, 10:22 PM
Rachel-
I am so sorry. Its a good thing that they caught this, even if it was late. But maybe after this is over, Abby will feel better and you can feel better knowing she is healthy and happy again. The best thing you can do for her is to be strong and help her get through this. Good luck, I know it will all be okay.

jojo2324
12-18-2002, 10:27 PM
Oh Rachel, I am so sorry. But I'm glad the x-ray tech caught it before the condition worsened. I hope that all will be resolved...Please know that I will be thinking of you often. If you want a troop pf irate moms to storm the offending hospital, I think you've got a good bunch here. Give Abby a big hug and kiss from me, and one to you too...hang in there!

Rachels
12-18-2002, 10:32 PM
Thanks, you guys make me cry. And smile-- I love the mental image of all of you descending on the hospital. Please keep us in your thoughts. I just found the friend of a friend who's a radiologist, and he was very nice about my calling him at home, and he is going to arrange for Abigail to have the test tomorrow. I can use all the good energy I can get. I'm shaking in my socks.

-Rachel
Mom to Abigail Rose
5/18/02

dd_ani
12-18-2002, 10:57 PM
Hang in there, Rachel (and Abigail!). We will all be thinking of you-- I am so sorry that you are having to go through this! Please let us know how things are going and give little Abigail a big hug from all of us.

Michelle

twins r fun
12-18-2002, 11:36 PM
Well I guess even a yucky answer is better than no answer at all. What a time to find out-thank you ER doc. Good luck with the tests. I'll be thinking of you.

Nicole

megsmom
12-19-2002, 01:12 AM
I'm so sorry that you and your baby are going through this. Like it was said above, I only hope that maybe there will be some answers finally for you.

Hopefully Abigail will sail through the tests. I was so upset when Meghan had to have an x-ray test of her kidneys after a severe infection when she was 6 months. She came through it like a real trooper, though and barely even cried at all. This was Meghan's 3rd time that she had to be catheterized and had to endure multiple shots/blood sticks the week before. But like Beth mentioned, babies are incredibly resiliant and thankfully have a very short term memory of this kind of stuff. We'll be crossing our fingers that hopefully all it will be is tests and minimal suffering for little Abigail. I would think that there are some good docs to be found in NC who can work closely with your ped.

I never got a chance to respond to your other post. *sigh* I work in health care, and it is sometimes just deplorable what happens in my profession. What terrible advice you got, both in delivery and substance. I certainly hope when this is all over you can find the time to write a letter to the CEO of this hospital. At least at our hospital this is when you really get a response.

Good luck to all of you!!!!

Jen
mom to Meghan 7/13/01

P.S. I hate to even mention this, but just don't want anymore headaches for your family. Make sure you check with your insurance so that this gets covered appropriately since you are out of town. Sometimes people get sidetracked when emotional emergency decisions need to be made, but the folks at insurance cos. are even more uncaring and unsympathetic than that ER doc.

starrynight
12-19-2002, 01:20 AM
HUGS to you and Abigail, I'm glad you found out what it was, sorry it might mean surgery. My neighbors son had this and he had surgery for it and is now a healthy, spunky 2 yr old. :)

gour0
12-19-2002, 08:42 AM
Oh Rachel, what a terrible time for you and Abigail! I hope you have found the answer at last. It is so frightening to think about how much we rely on doctors to know what they're doing! I'm so glad that you are not willing to just go along with anything a doctor says. It took them a year to figure out that my neice had water in her ears and couldn't hear. She's almost four now and her speach is keeping her from interacting well with other children. I know that this is small, but is just another example of how doctors just brush off our concerns and how often we let them! Please keep us updated on Abigail's progress. I hope they will resolve this quickly and positively so you all can relax and maybe enjoy your holiday. God Bless, Stacey.

sntm
12-19-2002, 11:08 AM
How terrible! Did they give you a specific diagnosis - intussusception, volvulus, Meckel's diverticulum? If there is any info I can give you about any of those, let me know. I hope Abigail's tests clear things up.

I read your posts about the ER, too. That was just deplorable. While there are fabulous people who go into emergency medicine, the nature of it also tends to attract some with the shift-work, "treat 'em and street 'em" attitude. Sounds like you might have gotten one of those. Glad the radiologist caught it.


shannon
not-even-pregnant-yet-overachiever
trying-to-conceive :)
PREGNANT! EDD 6/9/03

emmiem
12-19-2002, 11:53 AM
Just want to mention, that an ER doctor is just that, an emergency room doctor. That is why he sent the x-ray to the radiologist. A radiologist reads x-rays for a living. I understand your frustration but just wanted to help people see the doctor's point of view.

mama2be
12-19-2002, 12:43 PM
Rachel,

I am so sorry that you are having to go thru all of this. I am thankful that the rad caught this though...

As you know I am in Raleigh and here for the holidays (I forgot if your parents are here or Charlotte...I think you said Charlotte). If I can help with anything please do not hesitate to contact me.

You are in our thoughts and prayers...Abigail appears to be a trooper and she will suprise you at how strong she will be I am certain.

Hugs and kisses to you gals!!!

Rachels
12-19-2002, 12:52 PM
Thanks, Shannon! They said they're looking for a volvulus. I looked it up online and mostly what came up was about dogs!!! Apparently it's a common dog thing. Obviously, I'm hoping it's not that, because I'm scared of the surgery idea for her. Can you tell me anything about surgery and post-op recovery for babies?

Emmiem, I know the radiologist is equipped to do a more thorough job than the ER doc. But the fact that the ER doctor's entire approach to us was so haphazard and inappropriate makes me all the more angry. An ER doctor should be able to handle emergencies. If she can't read an x-ray well enough to know that there should be another x-ray taken, I have real concerns about that. So did the radiologist, who thought the ER doc should have caught it. I love good doctors. I trust them and rely on them. But shabby medical care for my infant is not acceptable to me, no matter what lens I put on.


-Rachel
Mom to Abigail Rose
5/18/02

nohomama
12-19-2002, 01:48 PM
Rachel,

I'm happy to hear that there was at least one competent doctor who played a role in this horrendous experience.

My only advise to you is to stay focused and in the present. Research what you can, but don't let yourself imagine the worst (hard, I know). Just take one step at a time.

Sending healing thoughts your way.

KathyO
12-19-2002, 03:31 PM
I'm glad we've got people like Shannon on board to give you the nitty-gritty details. For what it's worth, my neighbour's daughter had this surgery too. She was a bitty infant at the time, and everyone was pretty upset about it, but she sailed through, and I babysat her regularly while she grew up. The scar looked like thunderation at the time, but what's wonderful was that SHE grew... and IT didn't. Can't see it now. She's now tall and beautiful and strong and starting work as a music therapist.

Abigail's got a tiger of a mama looking out for her interests. It's hard to see her going through the medical stuff, but just keep picturing her happy and free of the pains that have been bothering her so much. Everything that needs to happen will happen! Our thoughts are with you.

Best,

KathyO

LisaS
12-19-2002, 04:53 PM
I am so sorry that you are going through this. I just wanted to let you know that my dd had surgery for a hernia at 2 weeks. At the time, I didn't know anyone whose baby had ever had any type of surgery so was distraught. At her 2 week check-up, our ped told us that my daughter had an ingoinal hernia. He noticed it b/c she was screaming at the top of her lungs because she hated being naked at that point and the doctor had stripped her down to do the exam. Basically, once he found it, we didn't have time to think or research b/c he said it was bad and we needed to act immediately before it popped and possibly caused damage to her ovary. The other thing was that we weren't supposed to let her cry (pretty hard to ask of a 2 week old) b/c that would aggravate it. We spent the next day meeting with the pediatric surgeon and anesthesiologist -- actually, that was the scariest part of it all...that she had to be put under. All babies, actually have to be put under for surgery, b/c its not like you can tell them to just lie still while they make a few minor adjustments.
So, we found out on Wednesday, met w/the specialists on Thursday and then scheduled the procedure for Friday at the hospital where she was born. We took her to the hospital -- the worst part was that she couldn't eat for 4 hours prior...she did, however, take a pacifier and sucked at it furiously -- (this probably won't be a problem for your daughter as she is older and can go that long between meals) anyway, we were in a private room with her and the surgeon and anaesthesiologist came to meet with us and reassure us and explained exactly what would happen. We then took her downstairs where they put her in a hospital gown, gave her an IV, and "put her out"...we then had to leave the room...it was horrible seeing her there like that, but there was nothing to do. THe whole procedure lasted 40 minutes...the worst of my life. But, then it was over and she came out and still had an IV (that was the worst...she hated it). The anasthesia wore off right after and they called us to come to get her from the post-op recovery room. I nursed her and she then went to sleep for a while. Both DH and I stayed at the hospital with her and she was monitored around the clock. I think the worst part for DD was over...it took her about 48 hours to get back to "herself" and it took us a few more days to get over what had happened, but she is completely fine. Has a teeeny scar on her bikini line that was completely unnoticeable from about 2 months afterwards. I know this isn't exactly what the situation will be w/your DD, but I thought I'd let you know what it was like to go through surgery with a baby -- sorry if its more than you were looking for.
HTH,
Lisa

mamahill
12-19-2002, 05:47 PM
Oh Rachel - my heart goes out to you. I can't imagine what you must be feeling. Hopefully this will all be cleared up and Abigail will be on her way to a full recovery. I can't imagine what it would be like to send your baby into surgery, but your little one is strong and she'll be the better for it. Please keep us posted - my thoughts and prayers will be with you. Hope you are able to enjoy the holidays despite this.

Take care--

Rachels
12-19-2002, 11:35 PM
Thanks so much, everyone. Your encouragement has been extremely helpful to me. I posted an update in the Lounge for anyone who wants to know the latest. Further reports as events warrant!

-Rachel
Mom to Abigail Rose
5/18/02

sntm
12-20-2002, 12:00 PM
If Abigail did have one, it sounds like it was pretty minimal and probably reduced itself. These things are usually pretty obvious on x-ray when they are bad -- it looks like one of those balloon animals, like a long tubular balloon bent in half and twisted together. The barium study will let them determine if she has a malrotation.

I've attached a section from the major textbook on surgery for you to look at. The cases they are describing are much more acute and severe, so DON'T even look at the mortality, etc. That doesn't apply to Abigail in her situation even if she is diagnosed with malrotation.
If this happens again, just watch out for signs that she is really sick, like lethargy, bloody stools, belly tenderness, not peeing, and demand to see a pediatric surgeon if possible or if not then a general surgeon and a pediatrician.

Feel free to email me if you have any more questions, or if she does have a positive diagnosis and you want info on any surgery or surgeons.


from Townsend: Sabiston Textbook of Surgery, 16th ed., Copyright 2001 W. B. Saunders Company
MALROTATION AND MIDGUT VOLVULUS
Anomalies of intestinal rotation result from a failure of normal bowel rotation from the fifth to the twelfth week of fetal development. The small bowel lacks appropriate fixation to the posterior wall, the cecum fails to migrate to the right lower quadrant, and the colon fails to attach to the lateral abdominal wall. This situation results in a right upper abdominal position for the cecum, which may extend fixation bands across the duodenum and may cause obstruction. The bowel hangs from a narrow pedicle based on the superior mesenteric artery and vein. Because of the presence of abnormal bands, the small bowel can twist in a clockwise direction, with resulting volvulus of the midgut. Congenital diaphragmatic hernia, abdominal wall defects, duodenal atresia, and prune-belly syndrome are conditions associated with anomalies of rotation and fixation.

Approximately one third of all cases of midgut volvulus occur in the first week of life, and 85% of cases are recognized by 1 year of age. Infants usually present with the sudden onset of bilious vomiting and become seriously ill. If the condition is not recognized promptly, midgut infarction may ensue and may cause either death or the need for massive enterectomy. On physical examination, the abdomen may be tender and distended. Bilious material is usually observed when an orogastric tube is passed into the stomach. In some cases, bloody tissue can be passed per rectum. The plain abdominal radiograph may show an airless abdominal cavity beyond the level of the duodenum or many air-fluid levels. Both barium enema and upper gastrointestinal barium study (our test of choice) may prove useful in achieving a diagnosis. The contrast enema study documents that the cecum is in an abnormal position in the upper abdomen. The upper gastrointestinal contrast study demonstrates obstruction at the level of the second to third portion of the duodenum at the point of volvulus around the superior mesenteric vessels (the corkscrew effect). Reports suggest the diagnosis can be achieved using a sonographic study; however, we have no personal experience using ultrasound in patients with acute cases. The affected infant is given intravenous antibiotics and fluid resuscitation with crystalloid solutions (lactated Ringer's solution)


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1478
and is taken to the operating room on an emergency basis. The surgeon may elect to place a central venous catheter at the time of the surgical procedure for feeding purposes when a midgut volvulus is present because of the delayed resumption of bowel function postoperatively. [121]

At the time of laparotomy, the bowel is eviscerated, and the volvulus is identified and reduced counterclockwise. Although the bowel may look dusky, it often returns to a more normal appearance after a period of observation. When the status of the bowel is in doubt, the use of a sterile intraoperative Doppler probe or fluorescein with a Wood light may be useful in documenting the viability of the intestine. Obviously infarcted intestine is resected. Any fixation bands (Ladd bands) from the abnormally located cecum across the duodenum or jejunum are divided, and the colon is moved to the left side of the abdomen. The cecum is then placed next to the sigmoid colon, to widen the base of the mesentery in a manner similar to opening the pages of a book. The entire small bowel then drops straight down from the duodenum on the right side of the abdomen. An appendectomy is also performed because the cecum is then located in an atypical position that makes the future diagnosis of possible appendiceal disease difficult. If the viability of most of the bowel remains in question at the time of detorsion, the abdomen is closed and the patient is given supportive therapy. A second-look procedure is performed after 24 to 36 hours to evaluate whether the bowel is viable. The mortality for midgut volvulus remains high (18 to 25%). Even those infants who can be salvaged may have significant morbidity, because short bowel syndrome can be a consequence of extensive bowel resection. [132] Because midgut volvulus can occur at any time, when malrotation is identified either de novo or at the time of a laparotomy for another condition, a Ladd procedure and an appendectomy should be performed.

Other patients may present without midgut volvulus later in life, usually during childhood or adolescence. These patients often have vague, long-standing abdominal complaints, and the contrast study demonstrates an abnormality of intestinal rotation. In an individual case, it may be unclear whether the abdominal complaints are related to the rotation abnormality and/or what the actual risk for midgut volvulus may be. Most authors advocate a Ladd procedure and appendectomy because of the potential morbidity and mortality of midgut volvulus. Because of the expanding applications and potential perioperative benefits of minimally invasive surgery, some surgeons believe that a laparoscopic Ladd procedure and appendectomy are safe and effective techniques. The length of the laparoscopic procedure in neonates is similar to that of the standard open technique, and the laparoscopic technique may permit earlier feeding and may shorten the patient's hospital stay. [27] [247] [264] The laparoscopic approach is primarily used in the nonacute, less symptomatic patient and is not suitable for patients with suspected midgut volvulus.


shannon
not-even-pregnant-yet-overachiever
trying-to-conceive :)
PREGNANT! EDD 6/9/03