Since Tomas' last x-ray wasn't so hot his pulm and SLT had a conference this morning and that was that. Give the oral feeds a break for a few months and have another swallow study before we re-attempt. I'm ok with it, I would definitely not feed him at the expense of his lungs, but it was really nice while it lasted (especially during meal times when we could give him a little something with us).
The worst part though is his Speech Therapist told me this morning that she feels like she is in over her head and that he would better be served at a feeding clinic in a medical setting. I really appreciate her honesty, but I am not ready to go that route yet. I do not want the intensity of a feeding program right now. He still has so much other medical stuff going on that I really can't add it on yet, and I do not want to devote that much time away from the rest of my family. YET. There will come a time when I am ready for that but it is not right now. He is still young (17 months) and I would like to give him more time on his own to see if things improve. Especially his tone.
I called my husband to have him try to cheer me up, but that is just never a good idea, you'd think after 20 years I'd know this. He couldn't understand why I was upset about it, and I didn't help by not being able to explain it, but you'd think after 20 years he'd be able to figure it out without me actually telling him. Not. So I got off the phone and really thought about what it was that was bothering me.
It wasn't losing the feeds, I really am ok with that because I really don't want to hurt him. And while the initial switch to tube feedings seemed large and traumatic, the fact that he needs the tube has become rather insignificant since.
It wasn't losing his therapist. Since I said I wasn't interested in a feeding clinic right now she said she's stay on and continue to do oral exercises and speech therapy.
I finally figured it out. It was her saying he needed medical intervention. He needed to be in a medical setting to proceed. One more thing that needed to be fixed. One more thing over the horizon. One. more. thing.
So I tucked it away. Actually, I folded it up, sealed it in an envelope, put the envelope in a box, and put the box on a slow boat to China (after I kicked it a few times - the box, not the boat).
And you know what? I feel better.
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That stinks! I wanted to say "sucks" but didn't think I should! LOL Hang in there and don't just kick that box...stomp the hell out of it! LOL
ReplyDeleteRight there with ya girl just don't try to ride the box to China yourself! I am sorry husbands just don't get it sometimes-call me next time I'll listen and get it! Or bare minimum instruct you to medicate with 16CC of Coffie strong, and 20CC chocolate, the expensive kind :) Praying for you!
ReplyDeleteYou are married to my husband!!!!!
ReplyDeleteSometimes it's not the problem it's the way it's presented. Just one word can feel like a punch to the gut. but good for you... it's on it's way to China, let them deal with it!!
Sending love and hugs and a prayer!
And BTW, you are an amazing person!!!!!!!!!!!!
Husbands just don't get it or they don't want to admit that they do. You know they'll fall apart quicker than we will if they admit it.
ReplyDeleteI know that every time you think there is a light at the end of the tunnel the tunnel seems to get longer but look at how far he has progressed and the storms you all have weathered in the past 17 months. Amazing!
Oh yes, the chocolate and coffee 'script is four times per day or or as needed :-)
Men want to fix.They TRY and fix with a off the cuff solution,usually not a very good one at that sorry to say and sometimes it isn't about fixing,it is just about listening while we go trough our range of emotions.
ReplyDeleteNext time you send out that boat,I might have a bit of cargo to add if that is alright!!!
hang in there. i know it's not easy. have you thought about doing a local outpatient therapy? i know it's not ideal either, but i found it to be better than the therapists we had through eci.
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