options to help Silas with relearning how to gag, swallow and suck??? - Mothering Forums

Forum Jump: 
 
Thread Tools
#1 of 2 Old 12-30-2013, 01:43 PM - Thread Starter
 
crinker's Avatar
 
Join Date: Dec 2013
Posts: 2
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)

We have been in the NICU for about 90 days now.  Our baby boy, Silas Jo, is hypotonic and has no gag reflex and is not swallowing that we know of and so is not managing his secretions.  The speech therapist has told us that until there is a confirmed suck or swallow they cannot do a video swallow to see what muscles are working.  Until the ET tube is out, they cannot work with him at all.  He is scheduled for a trach this Tuesday morning at 7 am. (Trach is done and he is much m ore content!)  He has been having more secretions lately but keeps testing negative for any sort of sickness.  I think he is teething.  Our first son who it seems is most like this son also got his first tooth at 3 months I think. I think it sticks out in my mind because the other developmental progress was very late but not out of the range of development.  The hospital has given us the option to let Silas expire at the hospital or to continue to see if we can help him given that he has extremely high risk of permanent neurological disabilities such that he will not be able to care for himself.  They have stated that in 85% of neurological cases there is not a definite diagnosis and also an uncertain prognosis.  As parents, we are not ready to let the baby expire because we see he is aware and is 'satting' fine.  Heart rate, oxygen concentrations on a ventilator with minimum settings and respiratory rates are good.  He does drop his breathing to rest while on the ventilator and then picks back up.  We have tested his ability to breath off of the vent and ET tube with cannula air and his breathing is fine.  He tires out because of all the secretions he cannot keep up with without a gag or swallow reflex.  He barely desatted but he began using the extensor muscles to breath and then began to seize in his chin first.  They give him adavan right away and he is already currently on Pheno barb and Keppra at therapeutic levels. They are weaning him off of the ventilator for 3 hours at a time for a total of 9 hours during a 24 hour period.  I think he is responding well to this challange!   I type all this because we are now in the process of trying to think outside the box to help him...letting him expire without having tried all we can .....can't do it..I am reading your posts and wondering if any of these ideas can help little Silas.  He opens his eyes now and recognizes my voice for sure and this week dads and his wonderful primary nurse who also as a son with a g tube and a trach and gets the cues and signals...she is very intuitive..He loves watching and listening to the music and the mobile movement.  He has reached for it with trembling arms or clonis.  He stays tight in his limbs until you work with him but if we stop he goes back to being tight...he feeds great and poops well too!  He usually starts twitching in a muscle before he gets greater controlled movement.  I have not confirmed this with the doctors but this is just my observation as I study him and hold him.  The g tube has about 2 more weeks to completely heal and the trach will take time too.  I held off on kangarooing so the tube can heal well but am chomping at the bit to go skin to skin again....any helpful ideas you all have would be great and I will reread your posts again and take notes the second time...thank you all for sharing...not only your ideas but the hope that flows from them....love you all!

crinker is offline  
#2 of 2 Old 01-06-2014, 08:25 PM
 
HappyHappyMommy's Avatar
 
Join Date: Mar 2009
Posts: 5,920
Mentioned: 4 Post(s)
Tagged: 0 Thread(s)
Quoted: 35 Post(s)

Welcome to Mothering! I don't have any specific advice to share, but I couldn't read and not post a :Hug. It looks like your post might have been missed, so I'm bumping it up for attention. :bump: Anyone have recommendations to share? @crinker, you might also want to post in the NICU parenting forum to get more responses. I will be sending good wishes to you and your little one!


hh2.gif Head over to the Holiday Helper forum and be a part of this wonderful Mothering tradition! joy.gif

Wondering about Mothering in general? Check out Mothering's User Agreement! smile.gif

HappyHappyMommy is offline  
Reply

Quick Reply
Message:
Drag and Drop File Upload
Drag files here to attach!
Upload Progress: 0
Options

Register Now

In order to be able to post messages on the Mothering Forums forums, you must first register.
Please enter your desired user name, your email address and other required details in the form below.
User Name:
If you do not want to register, fill this field only and the name will be used as user name for your post.
Password
Please enter a password for your user account. Note that passwords are case-sensitive.
Password:
Confirm Password:
Email Address
Please enter a valid email address for yourself.
Email Address:

Log-in

Human Verification

In order to verify that you are a human and not a spam bot, please enter the answer into the following box below based on the instructions contained in the graphic.



User Tag List

Thread Tools
Show Printable Version Show Printable Version
Email this Page Email this Page


Forum Jump: 

Posting Rules  
You may post new threads
You may post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off