My Friday Update

Okay a small update. I received the results today from A’s wash that he had of his lungs on Tuesday when they did the scope. He has a lot of lipid-ladens in the macrophages of his lungs. In English this means fat. Normally there is zero in a persons lungs however A had 40%. This is huge. So what does it mean? Well it proves that A is refluxing and then aspirating into his lungs. SOOOO I am much more comfortable now doing the fundo then I was even yesterday. The only way that we can give his lungs the chance to heal is to do the fundo.

Now, I spoke with the surgeon tonight and their stats say that there is only a 70% chance that the fundo will work for A. In neurologically impaired children it is lower. Of course there are other risks associated with it as well but we are speaking life or death in this case. Easy choice. As for open or lap he did say that they prefer lap. He said that there is less chance of adhesions and most surgeons prefer it this way.

The other thing that was said, is that they will put in a g tube and take out his gj. This kind of has me very nervous as it has been two years since he has fed into his stomach, not to mention the fact that he had these BIG spells everyday with the g tube feeds. However the surgeon did say that he has never seen a child have a fundo and need the gj tube. I laughed and told him not to say that yet! He did mention as well that this procedure will be a bit more because they will have to probably sew up where his gj is and do another incision for the g tube as the wrap will probably pull his stomach up too high.

As well I was told that A’s sodium is very high and this concerns them because he also has a low urine output of .3%/hour. So over the weekend I am to try and give him about 200mls of water to see if that brings down his sodium level.

I will be meeting with the surgeon that is on next week and have my decision ready. No date as of yet. Keep those thoughts and prayers coming!!!! They have worked for us so far!!!!

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7 responses

  1. Vickie

    Wow, great update. It sounds like progress! Happy to hear it šŸ™‚

    January 26, 2008 at 2:51 am

  2. Colleen

    Shannon check w/the other Mom’s on P2P before taking out the GJ…My dd has a G-tube, but she’s never had a GJ. Sending lots of hugs, we didn’t have a choice about a fundo either. Sending prayers that he gets well soon, and that the fundo works to stop his aspirations. Thank you for allowing me access to your blog. I love reading about other special kids!

    January 26, 2008 at 2:31 pm

  3. Trish ~CnJ's Mommy~

    Jacob’s fundo was a no brainer also. He has done fine with a G since then…never needed a J EXCEPT before surgery. Since you are inpatient anyway…and another J is an option in the future. AND (another and??) YOU want a button not the long tube…i’d go for it. It is not permanent…and not major surgery to put the J back in. KWIM? Lots of hugs to you all.

    January 26, 2008 at 5:22 pm

  4. dawn(iee311) on P2P

    hi shannon! hunter has a lot of neurological problems but the fundo has been really good for him. sounds like you are on the right track. good luck and mega hugs!!

    January 26, 2008 at 9:40 pm

  5. Sis Sarah

    I’m glad he was able to get the bronch, and it went well. It sounds like he didn’t grow nasty bugs from the wash, that’s wonderful news. We’ve been wondering how you guys were doing, hope things continue to go well.Sarah (p2p, Wesley’s mom)

    January 27, 2008 at 7:31 pm

  6. The Hull Munchkins

    Those pics of Ashton are so darling! He is such a happy boy, even in the yucky hospital.Sounds like a solid plan is under way. I’m sorry to hear about his lung wash results.. that must be really scary.Abby has a GJ through the same stoma her G tube was. (She has a fundo too) So if you still want the GJ feedings to continue for a while, I don’t see why they would need to switch him back to G feeds if you are uncomfortable with it. The stoma can be redone but a GJ button placed. just a thought.Hang in there guys!-Patty

    January 28, 2008 at 7:34 pm

  7. huether family

    hey girl, just got back online, so i had a lot to read, glad to hear things are going a bit better, sucks that you guys are still there, but he’s getting some help so it makes it worth while. he’s so very cute with that huge smile of his. just let me know if you need anything, and i’m there for youlots of hugslove ya and miss yamandi

    January 28, 2008 at 11:43 pm

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