Wed 2 May 2007
G Tube
Posted by Jane under Updates
[15] Comments
Ramona had a speech therapy appointment this morning and it looks like things are going in the direction of having a G tube placed. This would be a tube placed directly into her stomach through her abdominal wall. It is usually an outpatient procedure.
This would have several advantages. First off, Ramona has developed a dislike for drinking from her bottle. Although there are some things we can try to make this better (like reducing her continuous night feed), she is likely to need supplemental feeding for quite some time and the NG tube (nasal gastric) is not intended for longer term use.
The therapist thought removing the tube might actually help her with her eating by mouth as it would be one less thing on her face and reduce any irritation she might be feeling in her throat when she swallows.
We are encouraged by the thought of removing things from her face but want to discuss the risks of the surgery. So, we will be talking with the pediatrician, cardiologist, nutritionist and possibly a gastroenteralogist soon about the possibilities.
I also have a call into the cardiologist about weaning her oxygen. I asked about this at her last appointment and they said no, but I want to revisit it. Ramona has been much stronger and more alert these past weeks and her weight gain continues to amaze. I am hoping that they might agree to let her have the oxygen just at night.
If she gets the G tube and modifies her oxygen she would be tube free for part of the day. This would be great for our family. The tubes really hinder the ways we can hold her, the places we can take her and how much she and Simon can interact. As she gets older and more active this will likely just get worse. I also think it must be uncomfortable to have all that tape on your face all of the time.
So, nothing is decided yet, but these are some things we’re working towards and if it’s possible, I’d like to see Ramona tube free sometime in the not-so-distant future. Today’s pic is of Simon rocking the “Slacker” look.
Love, Jane.
Great camo pants, Simon! David has some just like ’em, but you look cooler (don’t tell him I said that).
I’ll be praying for a “Tubes R not Us” Ramona.
Karen
Great picture of Simon!
We will believe with you that Ramona will be tube free soon.
Blessings to you all,
nicole
Hi Jane,
Drew had a g-tube for a while. I think he only needed it for about a year. It was awesome! I think all kids should come with a g-tube. 😉 It makes giving medicine a snap and if they don’t finish their bottle you can just put it down the tube. I know noone likes the idea of another surgery, but I also liked the g-tube because it is discreet. It’s low profile and is hidden under their clothes. Plus you only have to change it every few months, and we had the option of doing it ourselves or doing it in clinic. Plus the ng tube has got to be irritating to the nose and throat. Anyway, call me if you want to talk g-tube.
Simon looks super cute today! (And Drew’s got the same shoes!)
Can’t wait until he can play on Xbox Live.
Oh my gosh, hes a little kid almost! I can totally see him playing mario cart soon.
Simon, you look so handsome! So missed being able to hang out with you guys on Monday because of my silly cold. It’s still hanging on a little, so as soon as it’s gone, I’m good to go Jane! And thanks for updating all of us on Ramona’s g-tube. I’ll be praying for clarity in all your meetings with your doctors.
Love, Val
do you think that they would let her have blow by some times instead of needing the nose canula oxegen? this way she would still have is blowing in her face but not need it in her nose for a little while during the day. is she on a pulse ox monitor 24/7?
Awesome shirt! Must be from someone with REALLY cool taste…hee hee.
Simon is looking less like a slacker and more like The Thinker. Thinking of his next sister mischief, I can only assume…
Good for you to continue to pursue new options for Ramona. It’s easy to have tunnel vision and get stuck doing things the same way (i.e. tube only in one nostril). Hopefully your inquiry will produce results!
Simon – one can never be too cute or too cool!
I’m quite sure Ramona thanks you mommy for always thinking a step ahead and constantly being her advocate
Love to yo all,
Jackie
Simon is so adorable! God bless him!
Jane, I’m praying for you and your family and you are in my heart. I have a friend that has a 6 year old daughter that had heart surgery when she was an infant. If you’re available to hear his testimony how he got help, please let me know.
I’m so glad to hear that Ramona is gaining weight. Praise God!
Just saying hi! Simon looks like a teen heartbreaker in that picture.
Love the look on Simon’s face in this picture!
Yeah, I was thinking thinker too. Looks like a college professor. Maybe from Berkley.
This notice that a g-tube may be in Ramona’s future seems a lot less scary then the last time this prospect came up. I am praying that it is completely uneventful and that she will indeed be happy not to have that thing up her adorable nose and down her throat any more!