Devynn try's to fit in by making the same kind of face!!!
Avery is so not himself..as you can see!.....
So uncomfortable and worn out....it was a NOT so good day!
On oxygen and one of many IV's in place.....
Sorry it has taken me so long to write.....It has been an adventure as it usual is here at the “Resort...aka Children's” ....we had been slowly increasing Avery's feeds;when that stopped completely yesterday... as you will find out why when you read below...Prior to yesterday we have had many tests conducted most of them came back okay;which is frustrating,because we had really hoped they would find something on those tests and they didn't. That would have been to easy...ha ha....Over the last several days Avery's reflux meds have been maxed and another had been added, another GI med was started as well. Avery's seizures are as much of an issue as they have been in months past....Those medications have been adjusted and discussed daily. Avery has started nebulizer treatments; due to his upper airway congestion.... this is something that has increasingly gotten worse as you will read below!
Avery has had a very very tough day yesterday....he has developed Aspiration pneumonia....and to top it off his IV blew..after it took the nurses 8 tries on Saturday Morn....and a with no success yesterday as well. His Aspiration pneumonia needs to be treated ...but we have NO IV access(as IV team has discussed with me) and can not give strong antibiotics via g-tube especially since he's still NOT tolerating feeds...after his Aspiration yesterday the G-tube has been cut off(so to speak...he had to have a little pedi-light in it last night because of NO IV).This morning he has had a lot of gaging/coughing/wreaching...along with more vomiting...UGH..Avery has been on O2, but is off right at this moment. Today we have talked about Central lines...G/J tubes...and MANY other issue....Please pray for Avery, US and the Team!
At this time he will be getting a line placed this afternoon(LIKE REALLY SOON SO PLEASE PRAY)......as he desperately needs nutrition as we ill continue to talk about the BIG plan in the days and weeks ahead!
He is also having another test as well this afternoon to determine.... or should I say getting a better idea where his aspiration is coming from!
Aspiration pneumoniais is bronchopneumonia that develops due to the entrance of foreign materials that enter the bronchial tree, usually oral or gastric contents (including food, saliva, or nasal secretions---from his vomiting).
Tired himself out...from how upset and uncomfortable he has been!
Gods in control we know this to be true, we just need to sit back and see what he'll have US do.
We may not like it, it may not be our will or our way....but we need to step aside and Trust HIM always!!
Trust in the Lord with all your heart and lean not on your own understanding,in all your way acknowledge him”
Your continued prayers that are sent our way are more than appreciated each and every day!
With Hope,Prayer and HIS Understanding,
Grace ,Joe and Family
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