It’s currently 3:57 am as I write this. Gannon is VERY nervous and anxious about his tube feeds as he got super nauseated the first two feeds we’ve ever tried. When he’s awake he usually cries in the first 10 minutes we start the feed so I’m getting up in the night to keep his Tylenol and ibuprofen going anyway, might as well run a feed too.
The problem with that is that when he sleeps he doesn’t swallow his spit so every 2 hours or so, he’s waking up with these horrible coughing fits from all of the phlegm in his airway. I’m afraid he will wake up and come running to me with a coughing fit and won’t take his IV pole with him so I’m just going to stay up for this hour or so while his feed goes. Then he only has to have 3 during the day instead of four.
If you haven’t heard, we were able to come home from the hospital yesterday (Saturday). If you haven’t heard before that, my 3 year old went in on Monday for a routine tonsils and adenoids removal and had some pretty severe complications and is now being fed through a feeding tube after 6 days in the hospital.
We are a little bit in limbo here this weekend, we didn’t think we’d be able to get home on Saturday. We have some supplies from the hospital and some from a very kind community member whose daughter also had an NG tube But other than that, we are a little bit pieced together. On Monday, I’ll do a medical supply run but there’s a chance they don’t even have all that we need.
I’ve got our “nurses station/med room” set up in the dining room. I’ve got dirty laundry to do, all the food in our fridge went bad while we were gone. Our house is in disarray to say the least and as I said before, Gannon is home but he’s also very anxious about continuing any medical things at home.
Carver is being such a supportive big brother and of course has a lot of (sometimes unhelpful) questions like “Why don’t you just eat Gannon?” for example so that’s a little difficult to navigate as well.
So we are all here just hanging in there. I had this delusion that things would just go so much smoother at home but we are definitely on the struggle bus trying to find our groove. I had picked up a shift on Tuesday night a long time ago assuming that things would be back to normal by then and I had to give that away (thanks for taking it Amelia) to be with Gan.
If you’re the praying/good vibes kind of person, please pray specifically that Gannon can find some joy. Please pray that he can understand why these tube feeds are so important and that his anxiety decreases.
I made a little video here telling more about what we went through in the past week. You can find that here: https://www.facebook.com/reel/872152250800625?mibextid=0NULKw&fs=e&s=TIeQ9V
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Praise God Gannon is home! The best place for rest and you and your family. Is there any chance you can get a Home Health service to deliver all the required supplies? Seems appropriate in this case (my sister did Hyperal for her son for 3w but everything was delivered).
Hugs to you Mom and prayers for Gannon’s return to good health.
Prayers for all your requests for Gannon!
I don’t usually comment, but I am praying for all of you. Hang in there. It is tough on all of you, but especially you, momma.. Fortunately, your mother raised you to be a strong, resourceful woman. Hugs from Texas!
Hey, just wanted to ask if there was a way they could make a retainer that would suction to Gannon’s roof of his mouth so he could swallow easier, like he used to? That way he would only be dealing with the hurt throat not too many problems. You could wean him off the retainer later. 🙂
My prayers for Gannon to find some comfort and for things to improve for him. What a scary week you have been going through.
I am surprised he was discharged without all the support in place. I hope the feeding pump comes in and helps a lot.
Prayers for the whole family.
So sorry for you all. It must be scary for all of you, not just Gannon. You have a brilliant, loving, strong family surrounding you – you will get through this. We are all thinking of you xx