Reflux & Our New Addition

Well I cannot wait to go to our follow up appointment early next week. Since my last update I have been ready to pull my hair out. Tuesday went pretty good for him but he did have a big episode at 2pm just before his nap. And then from 6-10pm he was not happy. Wednesday he was up by 9am after a very restless night but he was happy. He had another big episode at 2:30pm during his crappy nap. He got very congested to the point I had to suction. At 7:30pm he vomited which is a half hour after his feed ended. At 8:30pm he had a pretty big blue spell where you knew he was refluxing and couldn’t catch his breath. At 11:30pm the nurse put him to bed and he had another vomit with a desat to 38. Thursday…he was fussy for pretty much his whole feed from 6-7am. At 3:30 he had an episode with huge burps. When I opened his tube to vent him 20mls came out immediately. 6pm his feed started and by the time it was over at 7pm he had vomited three times. Friday…up at 10am after another restless night and pretty grumpy. Back to sleep by 12pm. After his 2pm feed there was tons of gagging episodes and crying. 5-6pm gagging almost constant. This was BEFORE a feed. Feed on at 6pm and within ten minutes he had the hiccups and more gagging. 7:40pm he vomited FOUR times and LARGE amounts. My guess is that it was pretty much the whole feed of 180mls. Feed on at 10:30pm-11:15pm and then vomit at midnight. Last night…another crappy night. Up at 9:30pm. 10am-11am feed CONSTANTLY going off colour, crying and fussing. 6pm feed TONS of refluxing/swallowing/gagging. It is now 11:30pm and nothing since his feed ended at 11pm. Knock on wood.

To top this all off at night and at nap times he is satting at 88. He was not even doing this in hospital. His baseline is typically 94-96. The odd time he comes up and sits at 91 but not often. It is driving me bonkers and I have a hard time sleeping knowing he is sitting at 88. There are times that he sits in the 70s too for at least ten minutes. Now I know they say not to focus on numbers but when this is not normal it is hard not to.

This past week has made me realize that I probably just wasted 88 days at the hospital for absolutely no reason. I still cannot get over the guilt I feel for seeming to make A worse. It sucks.

So that is why I am ready to pull my hair out. These friggin doctors need to listen to me when I tell them that he is STILL refluxing. He is miserable and very hard to keep happy. It is at the point where I am scared to feed him. Scared of him gagging/choking. And pissed off that he has to suffer through all this crap when he doesn’t need to. IF and only IF they would listen!!!!!! If you wonder how I remember all of the above it is because I have been keeping detailed notes to shove in their faces next week.

Good news…we have a new member of the family. We picked her up on Thursday night. She is a 7 week old 4lb jack russell crossed with a pug. They are called jugs. We decided on her name tonight which is Mady. She LOVES A and can’t get enough of him. A, well I am not too sure what he thinks. Probably tired of the kisses LOL.

Hanging out on mommy and daddys bed…

Going for a walk!

Mady!

Sleeping beside A…

Sleeping on my computer…

With Clifford…


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7 responses

  1. abby

    I’d be tearing my hair out too. Have they checked to make sure that the fundo is working and hasn’t come undone? And I forget if Ashton has a G-tube now or a G-J, but if the former, can he go back to the latter? The whole thing makes no sense to me at all and I can only imagine your frustration and anger and fear. Big hugs to you guys but I wish I knew more and could do more.

    April 13, 2008 at 10:28 am

  2. Cora

    I’m with Abby…maybe he needs to go back to J tube feedings. He seemed to do soooo much better on those.And Mady is adorable! I didn’t know that they cross bred those dogs, but now I totally see why they do it. I don’t think that she could get any cuter. And I’ll bet that her and Ashton become the very best of buddies.

    April 13, 2008 at 9:01 pm

  3. Emily

    I hate that you have to put up with this! I wish you could have had answers and I continue to be astounded, as I’m sure you do as well, that no one has done any tests to look at the fundo (which has clearly come undone and isn’t functioning). The puppy is precious! I hadn’t even heard of that mix but it’s precious.

    April 13, 2008 at 9:21 pm

  4. baby james

    I would be doing more than tearing my hair out. Wow, I can not believe all this, I thought this was not to happen with a fundo either. Gosh girl I am sorry. I think a journal of his epsiodes and issues is a good idea that way you don’t miss a thing and can show them all that has and is going on. I can’t believe all that time in the hospital and it is not better in fact it sounds worse if I can’t recall you posting to much bout throwing up like he is doing now. Thinking of you, and the puppy is so adorable.

    April 13, 2008 at 10:05 pm

  5. Andrea/David

    Hi Mady, wowwww you´re a cutie – like Ashton is! =))Please take care of your little buddy and make him smile and comfortable! =)Nice too see thaht Ashton has so much fun at home, much better than being in hospital ..Hope that you may get an answer for all that gagging and vomiting, keep my fingers crossed!hugsandrea with David

    April 13, 2008 at 11:01 pm

  6. Miracles

    I am so sorry you are having to go through this. It really isn’t fair at all.With all of what Ashton is going through it amazes me that he just keeps smiling through it all.Mady is ADORABLE! What a face. I LOVE the pic of her sleeping beside Ashton.

    April 14, 2008 at 2:37 am

  7. Micro preemie

    Shannon, how frustrating. Reflux is so much more complicated than people think. I’m so sorry Ashton is having so many episodes and reflux pain despite the fundo.We are also struggling with reflux and feeding intolerance (j-feeds) despite high doses of Nexium and past fundo. Abby goes in next week for upper GI and ph probe again. yuck.Good job on taking notes! It does help to have records to show. I’m doing the same thing. It’s helpful to look back and notice trends.I hope your follow up goes well and that the doc will listen to you. Mady sure is cute. I hope she brings some comic relief to your family.-Patty

    April 14, 2008 at 7:56 pm

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