I met with Jax surgeon today. He was a little concerned about doing a cecostomy because he thinks that he won't pass stuff even with it. He said it might be like putting a flush in a floppy balloon. But there is nothing else to do and I can't keep giving suppositories daily. There is a simple surgery to try.
The first one is were they take the appendix and bring it to the surface and make a stoma, through that you can put suppositories and flushes. This is a bigger surgery. It would be a big scar. The one he wants to try is laproscopic, he uses a radiologists help, he pulls the bowell to the side of the abdomen, and the radiologist will "spear" it and insert a button similar to a g-tube. The reason for this one is if it doesn't work all you have to do is pull it out. Here is a picture of the tube. It is so low that it is almost flush with the body.
Here is a pic of what it looks like inside. I guess there is no balloon, but look how flat is sits against the abdomen.
We originally scheduled for June 5th. But that day we have tickets to the air show with Hope Kids. Mondo is dying to go to that. He loves everything military. Plus his birthday is that weekend. I cannot do that to him. He always gets the short end of the stick when Jax is in the hospital, and it always seems that something happens to Jax when we were supposed to do something with him. So I told her sorry but it would have to be another day. So tommorrow she will call me with a date. He will stay in the hospital for a couple of days, depending on how well he extubates. With his nissen he extubated in 4 hours so I think he'll do well. Now if we could only get Boston to call...
so is this how he will eat?? We went to our follow up yesterday and they are going to try Zach on a new med for reflux, I'm not sure of the name yet because the pharmacy has to order it..Also have you ever heard. they told me to buy ginger from the store and give it to him.. They said it sometimes helpds kids with severe reflux..I was like what, they said yeah believe it or not it works on some kids.. so I guess at this point it won't hurt to try. I'll keep praying for you that you get that call from Boston!
ReplyDeleteI hope they can get you in soon for the surgery and that it helps Jaxson!
ReplyDeleteAND! We got our beautiful and soft blanket! I just need to take a picture of peanut and email you a little blurb about her. :)
THANK YOU!!
Come on Boston.... We're hoping you get that call soon!
ReplyDeleteI really hope you hear from Boston soon. Will continue to keep Jax in our prayers. I hope this first surgery helps him out.
ReplyDeleteAir show sounds like lots of fun!
I pray that this surgery works for him! It sounds like a great solution! Hopefully you will hear from Boston soon too!
ReplyDeleteWhat a beautiful blanket! Great job! I need some of that girly stuff at my house! I'm sure that you can relate! :)
I will send you a picture of Gavin in his chair so that you can see it better. As for the nap nanny, I was concerned about it being too small for Gavin as well, so I asked the mom that ordered one for her daughter to take pictures of it when she got it. I'll forward them to you. Her daughter weighs about 24 pounds and is almost 36 inches long. She fits perfectly in it. She said it is awesome for her daughter, who can't sit up either.
Have a great day! The air show sounds great! We love going to those! Have fun!
I hope that will help Jax. I really hope and pray you can get to Boston soon.
ReplyDeleteLacey, to answer your question, we didn't know 100% that Em had DS, my AFP test came back positive, and I didn't have an amnio. I already knew in my heart.When she was born, I made sure I was the first one to see her, I didn't want the doctors to tell me.I knew right away, just like you and I didn't care either.Isn't that the best feeling!
ReplyDeleteP.S I posted this comment on my site first.That was brillant,Lol,
the things we do for poop
ReplyDeleteYou're such a good mom. It can be so difficult to juggle what's best for all you're kids. Knowing what can be put off and what can't, being sure that the other kids don't always feel second best.. it's a job all in itself. Your doing great, keep up the good work. I hope you all have a great time at the air show and that Jax comes through with flying colors. He's always in my prayers.
ReplyDeleteCOMON BOSTON, What the heck!!! Oh Chloe, she looks beautiful with the blankie...I'm so glad that she got blessed with one of your great blankies;)
ReplyDeletePoor Jax, I'm so sorry that he's going to go through another surgery...seriously, He's one HERO!!!
{{HUGS!}}
Beautiful blanket once again Lacey.I wish there were easy answers my friend and easy balancing with the other children.I can so relate.Prayers for sweet Jax as always.
ReplyDeleteWe are praying you hear from Boston soon. We hope the surgery you have scheduled will go well and will help Jaxson.
ReplyDeleteThose blankets made it to their destinations fast! I just went and read some of both of their stories. What amazing sweet girls.
Thanks for the CPAP advice. Carter was on it briefly in NICU and luckily he was sedated so it stayed in. We have enough problems trying to keep oxygen in that I don't think Carter would do well with CPAP. Your idea of turning up the oxygen sounds much better. Hopefully we will find out more after the sleep study.