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!
options to help Silas with relearning how to gag, swallow and suck???
Welcome to Mothering! I don't have any specific advice to share, but I couldn't read and not post a . It looks like your post might have been missed, so I'm bumping it up for attention. 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!