View Full Version : Adam capping
01-14-2003, 03:23 PM
I am sitting here watching my son with a full CAP on his trach. He is laying on the floor playing happily, and has been wearing it for 35 minutes now and is fine. His sats are a steady 95 and his heartrate a calm 110, this is exciting. Let's pray that he has finally decided to cap. That is how it happened with the speaking valve, we were about to give up hope and he just started wearing it for good! If he decides this is ok, we are on our way to decannulation for sure.
Keep him in your prayers! I will let you all know how it goes later. I'm so excited, I can barely stand it! I know I should not make such a big deal out of it, but it feels so good to watch him like this, it is the most comfortable I have ever seen him with a cap on...
Tina http://www.twinEnterprises.com/iB_html/non-cgi/emoticons/biggrin.gif [CODE]
01-14-2003, 04:42 PM
This is very exciting!! As we get closer to this day ourselves it's easier and easier for me to realize what you all who are in the process of decannulating are really feeling.
Did you say before that he came off the vent last February? I'm just curious - what have been the issues keeping you from decannulating sooner. I'm really curious about what our next year may hold.
Thank you and congratulations!
01-14-2003, 05:58 PM
Tina! That does sound really exciting. My heart actually raced a bit as I was reading the post. http://www.twinEnterprises.com/iB_html/non-cgi/emoticons/biggrin.gif Prayers are definitely coming your way. http://www.twinEnterprises.com/iB_html/non-cgi/emoticons/smile.gif
01-14-2003, 06:25 PM
I am hoping and praying. I feel emotional because I can't wait for the day. Adam can be one of the special people who paves the way for us. Way to go Adam. I hope I hope......
Kelly http://www.twinEnterprises.com/iB_html/non-cgi/emoticons/biggrin.gif http://www.twinEnterprises.com/iB_html/non-cgi/emoticons/biggrin.gif http://www.twinEnterprises.com/iB_html/non-cgi/emoticons/biggrin.gif
01-14-2003, 09:17 PM
Oh, I'm excited with you and yes, you should make a big deal of it! Please, please keep us posted. We are going to Cincinnat a week from today for a 48 hr capping trial. Trying not to get my hopes up but its hard not to. I was in tears and at the end of my rope just 2 1/2 months ago when Evan would not wear the passy but then boom, one day he did and he's been wearing it ever since-all day long. My husband and I put a cap on him here at home just to see how he'd react and it didn't phase him so we're hoping we'll have a good 48 hrs while in the hospital. Yea Adam!!
01-14-2003, 09:37 PM
Well, we went for 1.5 hours just fine, but had to take it off to place his feeding tube. (He has an NG--nasal gastric tube). He had pulled it this morning and I decided to let him go the afternoon without it. That is when I decided to cap. He actually pulled my hand to put it back on like his PMV...
We tried again after he got settled down from the whole tube ordeal, and he did not sat as well and was a bit noisier breathing...Hmmmmmm.... I am wondering if that darn feeding tube is blocking something and making it harder....??
I think I will call ENT tomorrow and seek their opinion there.
We will try more tomorrow, I will let you all know.
01-15-2003, 09:20 AM
Im just curious, why does he still have a NG tube at 2 yrs ? I was always told that after 2 months of needing one a g tube should be placed as there is danger of damaging the nasal pathway with repeasted use. I can see why it would interfere with capping! (Maybe I read the post wrong) Good luck with the capping! Keep us posted.
01-15-2003, 09:47 AM
He was ng for a long time until he was trached (Adam spent his first year of life in the ICU)... When he was trached he started to aspirate formula into his lungs, and the placed the tube NJ (further down, bypassing the stomach into the intestine) At that point we and the neonatologists asked his general surgeon to place a Nissen and a g-tube, and our super conservative surgeon said no, keep him NJ for a while, take him home like that and come back after 6 months or so and we will do it.... We asked if his stomach would shrink if it was not being used, he said no, it would be fine. His comment was, "Adam needs another surgery like he needs a hole in the head, take him home and let him be a baby." We could understand his concern, but still felt we should have the g-tube, but there was no talking him into it. He is an excellent surgeon and the head over all of them at our children's hospital, but hard headed!
Well, when we went to have the procedure done, lo and behold the stomach was too small to do both a Nissen and g-tube, so they just did the nissen, and it still has not grown big enough over the last yr and a half. We are pretty irritated with the Doc, if he just would have done it then, there would be no problem. Now Adam is stuck with this NG. We are thankful we have it, as Adam is so fearful of anything being put in his mouth, that oral feeding is a nightmare. (He was intubated for the first 9 months of life and had alot of trauma to the mouth with 6 or 7 extubation trials, oral suctioning, etc...)
There is a slight hope that his stomach will grow as he does, it is such a bummer... http://www.twinEnterprises.com/iB_html/non-cgi/emoticons/confused.gif
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