The bad news (if it could be considered bad) is that Benjamin definitely needs this surgery. We met the surgeon this morning, and she is a RIOT! Loved her.
What he has is classified as duodenal atresia. According to Wikipedia, here's the definition: Duodenal atresia is the congenital absence or complete closure of a portion of the lumen of the duodenum.
Also: Approximately 20-40% of all infants with duodenal atresia have Down syndrome.[citation needed]. Approximately 8% all infants with Down syndrome have duodenal atresia.[1]
With Benjamin's particular case, he only had a pinhole opening in his duodenum at birth (or even prenatally), so when he was just eating (drinking) breastmilk, it didn't pose as much of a problem. But over months of pressure being put on the hole, the intestines stretched out and created a windsock in the duodenum just past the pinhole opening, thus narrowing the passageway. And once he started solids (shortly after recovering from his heart surgery), it was just too much for the little guy to take. The surgeon said she is going to do it "the old-fashioned way" b/c she'll be able to get more of the webbing out that way that is causing the obstruction. I told her no biggie; he already has scars on his chest and abdomen. One more isn't going to be a big deal; this way we can hopefully get rid of this problem for good.
Now the good news: I asked her the question that was burning in my mind and Matthew's mind...do we have to do the surgery this week? Could it wait until, say, next Tuesday, when Matthew will be back?? She said sure! YAY!!!!!!!!!!! I just have to hold off giving him any solids (exceptional, since that's such a pain anyway) and we'll expect a phone call on Monday to tell us when to come in on Tuesday. She has two small procedures to do before his surgery, and then he'll be at about 10 or 11 in the morning.
Another kind of bad thing is that Benjamin may have to be in the hospital for awhile, depending on how he recovers. It's not the pain or discomfort from the recovery; it's when he can eat and poop normally. She said that if this were the jejunum or the ileum (the other two parts of the small intestine, with the duodenum being the other), then he might be home in three to five days (emphasis on the three days). However, the duodenum is generally the *last* part of the body to "wake up" after surgery. So it could be a week or more, but we'll pray that it's not.
So Matthew gets home late Monday night, and we'll go to the hospital on Tuesday morning. Andrew will stay with my parents, which they will all love. The great thing is that the hospital is downtown, very close to Matthew's work, so he should be able to go to and from work as he needs to. I am just so relieved not to have to go it alone, even though I was prepared to.
Thanks for everything, and we'll keep you posted!!! More cute pictures to come later. :)
13 comments:
So glad you liked the doctor. We will pray you will be home in 3 days (or less). Please, please let us know if you need anything-we can drop food at nurse's station for you. I know how you love that hospital food though.
Selena
I'm glad to hear that it can wait until both you and Matthew can be there for each other. Keep us updated.
I am so glad that you have a surgeon that you like so much and that is so on your side. Love it! I will keep Benjamin in my prayers. You rock.
We will be praying for Benjamin. He sure is a cutie!
Fantabulous!! I think I made that word up. Fate worked out so you could have Matthew by your side. I am so happy. Best wishes to Benjamin!
Angela, I'm just guessing this will be done at Vandy? Kennedy also had a Duodenal Web (they call it a web with the pin hole size opening... atresia is a complete blockage which is diagnosed prenatally and has to be repaired at birth so the baby can get ANYTHING into his tummy) which went undiagnosed until she was 7 months old and basically starving to death (LONG story). She was in the hospital for 2 weeks BEFORE surgery because she needed to be pumped with TPN and Lipids to get her healthy enough to survive surgery and then they operated. After surgery she was in for 5 days. She recovered REALLY well and they let us go home as soon as she was able to poop. She wasn't allowed to nurse for the first 48 hours after surgery. We're almost 4 years out from that surgery now and her scar is INCREDIBLE! SO tiny. If I didn't know it was there I probably wouldn't even notice. It looked pretty ugly right after but don't let it scare you! Who is your surgeon? Since you said "she" I am guessing it's Dr. Purcell?
If you have any questions or anything feel free to email me! CAmommy2KJ@aol.com
Renee
(mom to Kennedy)
www.myspecialks.com
So happy Matthew can be with you for support. Yes, our boys are tough! It still amazes me what they go through with smiles on their faces. Hang in there. They both will be running around getting into mischief before we know it(and I can't wait for that!). :) Amy
I will keep Benjamin in my prayers. I am so glad you won't have to go it alone! Keep us posted!
Becky :)
Poor kiddo! I'm so glad you will both be there. You'll keep each other sane and laughing.
Angela,
WOW! You never know when God will just speak to you and say LOOK! and today he did just that to me. I am happy that the bad news has a good outlook. Benjamin sounds like such a little blessing. I am glad that you liked the surgeon and will be keeping you guys in my thoughts and prayers. Tell Mr. Andrew not to have too much fun at your parents...and know that you never have to go anything alone...we feel it sometimes because life is sometimes simply overwhelming to us here but to God it is just a walk in the park and He manages to give us strength to carry on and drive to want to if we just hold on to Him.
Praying for you all. GL Tuesday!
so glad you love the dr. and that matthew can go!!!!!!
So sad for poor, unsuspecting Benjamin. :(
I love your positive outlook on everything.
You are amazing as always....
Steph
What an answer to your prayers! That is so great that Matthew will be able to go, and be able to attend work as he needs! I'm glad you like the surgeon! That is great.
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