Guest guest Posted March 9, 2005 Report Share Posted March 9, 2005 Woo hoo! WTG Connor and ! Geesh...now he's gonna be bigger than me......<wink> -Sharon- Just an RSS kid who grew up Orlando FL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2005 Report Share Posted March 9, 2005 , That is great news!! Regarding the tube, if I remember correctly, that happened to us as well. It is a pain in the neck until you get to switch the tube for a button. The button fits much better. As for gh, we do 's shots in his sleep. He doesn't even know that he gets them. Good luck and feel free to email me directly with any questions. Judith, Steve, (RSS) and (non RSS) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2005 Report Share Posted March 9, 2005 mary, glad to see all is going well, i have no answers on the g-tube ? as my child does nor have one. iti s good to hear that he is gaining weight cara mom to jacob Kearns wrote: Dear Friends, We started the Periactin on Monday. Ever so slowly I see Connor improving in his appetite. I put him on the scale this morning and he's clearly 20 lbs! That's up from the post-op drop down to the low 19's! Yah!!!!!! Presently we have him on 400 cc's at 45 ml/hr over a 10 hour time frame at night. It's working. The pump is working. Connor isn't tugging on his tube to much. He doesn't like to hold it at all. Some questions about the wound site. We still have a very small amount of oozing. The doctor told me that was stomach contents and not pus. Also, the tube use to fit snug, close to the skin. Now there is about 1/2 inch of give way. Is that normal? I'm still using the split gauze pads and bacitration ointment. Thanks so much for all the advice of late. Hey, has anybody tried the pumpkin muffins? I'll be making a batch tomorrow! Got a call from the Nutropin people. Our insurance approved the gh and medicaid is picking up the secondary payment. I about passed out when I heard that one! So, all the worry I had a few months ago was all for nothing. We will get our first shipment in five days and a nurse will come and train us on giving the medication. Please pray for Connor. This is yet another night time adjustment for him and I hope and pray for a smooth transition. Mom to Graham 8 ADD; Cameron 5 Blessedly normal; Connor 2 RSS, Kyphosis, g-tube, gh in five days!!!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2005 Report Share Posted March 9, 2005 - I rarely cry when I read postings, but I have chills on my arms and tears in my eyes. Maybe it is just because we all fell in love with you and Connor at the past two conventions. Who knows. But I am so happy that things are going smoothly for you all. You deserve it!!!! Hug that boy for us! I just called Dianne at MAGIC to let her know, if you recall she carried Connor everywhere last summer and wanted to bring him home.... Jenn > > Dear Friends, > > We started the Periactin on Monday. Ever so slowly I see Connor > improving in his appetite. I put him on the scale this morning and > he's clearly 20 lbs! That's up from the post-op drop down to the > low 19's! Yah!!!!!! > > Presently we have him on 400 cc's at 45 ml/hr over a 10 hour time > frame at night. It's working. The pump is working. Connor isn't > tugging on his tube to much. He doesn't like to hold it at all. > > Some questions about the wound site. We still have a very small > amount of oozing. The doctor told me that was stomach contents and > not pus. Also, the tube use to fit snug, close to the skin. Now > there is about 1/2 inch of give way. Is that normal? I'm still > using the split gauze pads and bacitration ointment. > > Thanks so much for all the advice of late. Hey, has anybody tried > the pumpkin muffins? I'll be making a batch tomorrow! > > Got a call from the Nutropin people. Our insurance approved the gh > and medicaid is picking up the secondary payment. I about passed > out when I heard that one! So, all the worry I had a few months ago > was all for nothing. We will get our first shipment in five days > and a nurse will come and train us on giving the medication. Please > pray for Connor. This is yet another night time adjustment for him > and I hope and pray for a smooth transition. > > > Mom to Graham 8 ADD; Cameron 5 Blessedly normal; Connor 2 RSS, > Kyphosis, g-tube, gh in five days!!!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2005 Report Share Posted March 9, 2005 hey mary!! that is such great news!!! go connor!!! jodie c > > Dear Friends, > > We started the Periactin on Monday. Ever so slowly I see Connor > improving in his appetite. I put him on the scale this morning and > he's clearly 20 lbs! That's up from the post-op drop down to the > low 19's! Yah!!!!!! > > Presently we have him on 400 cc's at 45 ml/hr over a 10 hour time > frame at night. It's working. The pump is working. Connor isn't > tugging on his tube to much. He doesn't like to hold it at all. > > Some questions about the wound site. We still have a very small > amount of oozing. The doctor told me that was stomach contents and > not pus. Also, the tube use to fit snug, close to the skin. Now > there is about 1/2 inch of give way. Is that normal? I'm still > using the split gauze pads and bacitration ointment. > > Thanks so much for all the advice of late. Hey, has anybody tried > the pumpkin muffins? I'll be making a batch tomorrow! > > Got a call from the Nutropin people. Our insurance approved the gh > and medicaid is picking up the secondary payment. I about passed > out when I heard that one! So, all the worry I had a few months ago > was all for nothing. We will get our first shipment in five days > and a nurse will come and train us on giving the medication. Please > pray for Connor. This is yet another night time adjustment for him > and I hope and pray for a smooth transition. > > > Mom to Graham 8 ADD; Cameron 5 Blessedly normal; Connor 2 RSS, > Kyphosis, g-tube, gh in five days!!!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2005 Report Share Posted March 9, 2005 Congrats ! Sounds like you have it all under control, you should feel very proud of yourself (Connor too). You have had to deal with a lot in a short time. I use Calmoseptine ointment to help with the oozing and grandulation tissue on the g-tube. & makes a great non-stick pad that has been working great. We cut them in half(why waste a whole large pad for a small guy)and then cut up the to the center so it fits snug around the tube after we apply the Calmoseptine. Good Luck, Henry -RSS, 4yrs, 40in/36lbs - nonRSS, 9yrs, 48in/45lbs Quote Link to comment Share on other sites More sharing options...
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