Wysdom seems to be doing a lot better. After I wrote the post we tried some of the suggestions that everyone gave us about venting and taking some of the pressure off of his stomach. I left the tube open for a while and he seemed to be more comfortable. We also took milk out of his stomach when he was uncomfortable. To me it seems like he takes a long time to digest it. We were able to cut back on the Tylenol and Advil and then we restarted feeds. We did his first feed at 30mls and hour. It went real slow working him up to his regular feeds of 135mls...but we did it by the end of Saturday. Albeit it is at a different rate that we kept adjusting. We started at 30 mls and worked our way up. He is now at about 120mls per hour and we will still try to move that up to his regular of 135 per hour. We also got a chance to talk to a doctor on call who verbally increased his doses of reflux meds to his current rate. So we upped those as soon as possible.
What a crazy 2 days that was. We really are not sure what happened but we are guessing two things. We think that he may have been really constipated and as mentioned by some of you, that the milk had no where to go except up and out. The second thing was the piece of whatever it was that we found in his milk that he threw up. It was kind of crunchy and sharp and maybe that was stuck in his throat and kept him gagging and clearing his throat. We normally do have lots of reflux but he doesn't usually clear his throat like that. Once the foreign substance came out his gagging reduced. We are not sure what it is. We watch him like a hawk because of his reflux so we don't think it's something he swallowed. My mom thought it resembled crunchy blood? Who knows? I thought maybe a part of the g tube? Anyways he also ended up pooping several times later that day so he got some relief. All of the intense gas that he had as well has reduced. The gas was so strong that it would push the pump out of the g tube. We are using the peg tube right now and he hasn't had a fundo but we still need to vent quite a bit. I am going to call our surgeon and talk to him about this. Right after surgery we had talked to him about the hopes that the g tube would reduce the reflux and he stated sometimes it increases it. Well wouldn't you know it? I think it has. He is supposed to be one of the top surgeons.
I have to thank all of you for your thoughts and prayers and my mom who is sick herself with some undiagnosed pain but came over to do all my dishes and clean my house and also take Blyss out for a few hours. I am so thankful for all you that think of Wysdom and send good thoughts and energy our way.
Wysdom has seemed to catch the cold that Blyss has, but it looks manageable right now. I will keep you posted if anything changes. Ah....I can breath now!!! What drama. Hoping for a drama free week. Next weekend is he is one year old and I hope that he is feeling good by then.
10 comments:
Their bowels seem to be so sensitive. Whenever Jax has surgery or gets sick we have to restart feeds very slow. Sometimes we have to do continous for a while. Sometimes it takes their tummy a while to wake up. Glad he's doing better.
so glad to hear things are better. I hope you got some good rest too. keeping you all in my prayers and sending love!
Sweet, sweet Wysdom... so happy to hear things are better!
Glad to hear things are better for that sweet boy...and you too! Still sending good thoughts and prayers your way.
Don't know how I missed your last post, you poor thing, you've been going through so much stress and worry, I felt awful reading about it all. Naturally very relieved to read things have taken a turn for the better and that your little man is feeling better again. Sending positive thoughts and prayers your way that Wysdom continues to feel better and stronger everyday
Glad to hear that things are looking up for your little man! You story is inspirational! And I wanted to thank you for stopping by and visiting my blog. It's such a relief to be up and blogging rather than reading blogs privately. This coomunity and their stories have helped me in so many ways. I look forward to sharing my experiences too in hopes that I can help a new family with a Ds diagnosis!
Wow, you have been handling alot but glad he is feeling better. So glad you have a Mom that will come over and help out. You are in our prayers that things keep getting better.
poor wysdom - i hope he is feeling better now that he was able to go to the bathroom... hopefully the reflux will calm down soon!
i am not sure if anyone mentioned this at any point in their comments, but at one point we had whitney on reflux meds + reglan to increase motility of her food from her stomach to her intestines because she would reflux through her g-tube. the reglan did seem to help this so that her stomach would empty quicker and not sit there so long. hope the reflux gets much better very soon!!!
I'm glad to hear things are going a bit better. We went through the violent vomiting too for a loooong time. That's why we eventually did the fundo. He was vomiting so much that it interfered with his everyday activities. He couldn't get through a therapy session, a meal, anything without major vomit. Then he started losing weight...ugh. Some people don't like the fundo because then they can't vomit and burp normally, but when the alternative is constant vomiting, I'll deal with the venting and such anyday..
If he still seems constipated, try Miralax. It works really well. It's not a drug and doesn't absorb into the body, it's polyethylene glycol, all it does is pull more water from the surrounding tissues into the intestines (making everyting softer and easier to pass). Mylicon (simethicone drops) will help the gas. It's also fairly harmless stuff, simethicone doesn't absorb either. It reduces the gas and then passes out of the system. You can buy them both over the counter.
Oh.. and the Mepilex (dressing) you want is Mepliex Lite.
I'm glad you were able to try some different things with Wysdom and he seems to be doing better now!
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