Facebook on December 20, 2010 at 6:58pm
THE VENTILATER IS OUT! Ill be down to see you abt 9am tomorrow baby. I cant wait to see you. Its like a christmas present every time I do!
Facebook on December 20, 2010 at 10:46pm
Danny is wide awake and wow do these nurses have their hands full with him! His legs are all over, he works himself to the bottom of the bed every 10 min. He wants outta here!
Facebook on December 21, 2010 at 12:47pm
On Monday they moved Danny to a "step-down" floor, intermediate critical care. He was becoming so wiry and was a non-stop flow of motion. The catheter was out and the ventilator removed for increasing periods of time. He was given oxygen through a trach collar when the vent was off, but his saturations dropped often when he would start coughing. They still suctioned him a lot, through the trach, and when he coughed, copious amounts of mucus flowed from it. I was forever wiping it away. A couple of days earlier they had to begin keeping his wrists tied down due to the risk of him yanking tubes and so forth out. He was tied again now, plus had big white mitts on his hands. This was heartbreaking in a way, because I knew he couldn't understand why he was being held from moving his hands, as well as having a thick fabric strap around his trunk and tied on each side under the bed rail, but one of the nurses assured me he would have no memory of any of this despite him appearing to be wide awake.
The constant movement made him unable to be left for longer than 15 or so minutes without staff coming in to pull him up in bed. He squirmed constantly, and wriggled himself down to the bottom of the bed over and over, all day long. It was relentless. He was much too powerful for the tied restraints to do much good. I stayed by his side for hours, placing my arm around his one bent knee in an effort to prevent him shifting downward. I had to brace my body against the bed with terrific force, and my back, neck and legs began to ache. The most disturbing thing about this phase was that his body positioning became much like that of an infant. His legs were always up in the air and bent in the same way a baby lies on the floor for a diaper change. I was embarrassed for him, knowing he would be just completely mortified if he were aware of this behavior. I attempted to protect his privacy at all times while I was with him, a never-ending cycle of trying to prevent the shift downward in bed, constantly drawing the sheet or blanket up over his knees and legs as he persistently kicked them off, and rushing out to get staff to come boost him when he made it to the bottom. He had no type of brief on at times because in all honesty he wiggled too much for one to stay attached. I noticed his butt was getting a tad red also. I took few breaks while there, usually getting a drink or snack only when staff came in to clean him up or check on things. He was sooo awake and looking all around all the time, but he had the very definite look of, as they say, "being home but the lights aren't on". He favored looking to the right most of the time so I tried to stay on that side more. His eyes would scan across the room, stop and rest for just a split second on me, and then would continue moving past. He didn't look me in the eye but for once in a great while, But when I entered the room he always looked at me and I could see recognition, as with other family members as well. On Wednesday he nodded "yes" and "no" to some questions, reached for my hand and squeezed it, pulled me down to him to hug me, and kissed me back when I kissed his lips. I talked to him and asked him things. The perpetual movement continued and staff was in often trying to figure out how to position him better. They discussed different beds and chairs, but no change was made because it just didn't seem safe to use other options. Several times he was nearly hanging out of the bed by his arms. At home I worried constantly about his safety although I knew the staff was doing all they could to keep him safe.
Wednesday his butt was very, very sore and rashed, and the catheter was put back in, which caused one more dilemma as he moved about and it got tugged and caught on everything, including his own feet. The feeding, which was continuously running, also presented a problem, the feed line getting caught, pinched and pulled. He was sent to x-ray to check it's placement due to leakage around the feeding site stoma on his belly. He was sent down to surgery as well, initially to get his jaw wired, but they then opted for bolts in his upper and lower jaw with heavy rubber-bands, apparently because he had a drop in BP during the procedure. The nurse explained to me that the Aspen collar would be enough in addition to what they did to his jaw, to hold it steady.
The doctor asked that I bring his previous medications along on Thursday so that they could get him restarted and hopefully calm his anxiety and restlessness somewhat. Each day I returned home sore and exhausted. I remembered Dr. Hoy saying it would be like this...
Today nick is 9! I now have 2 most special christmas seasons in my life. 2001 when i was given my precious baby boy, and 2010 when i nearly lost the love of my life but his life was spared and he was given back to us.
Facebook on December 21, 2010 at 4:06pm
So tired. Need sleep. To see danny again tomorrow and hopefully he will have calmed down some.
Facebook on December 21, 2010 at 11:22pm
Danny was sent to xray 2 check placement of his feeding tube since it seems to be leaking stomach contents? His butt is sore so the catheter is going back in 4 now, and he was tolerating the vent off w/jus o2 since 830am. Still as full of anxiety n movement as yest.
Facebook on December 22, 2010 at 1:25pm
Home from the hospital. Danny was as wirey as ever but looks good. Hes alert but i really think hes kinda jus living in the present with no real recall of past or conception of the future. I know there is memory present tho abt lots of things. Very hard to understand or explain. Hes in surgery now. I hope he does ok with his jaw wiring. Ily Danny
Deanne Peletsky Colna Kath apparently they didn't get to wire his jaw .... his BP went too low so they put bands in.
December 22, 2010 at 8:43pm
Kathleen Quinn-Farber
I just talked to the nurse. She didnt mention anything abt his bp. She said the surgeon opted for 2 screw type things on top and 2 on bottom, because the collar is holding him steady enough in conjunction with the rubber bands holding the jaw in alignment. They were able to do it in preferance over wiring jaw shut. Anyway, his vs are all wonderful now and he is off the vent again and staying in high 90s. I have to take his meds down tomorrow so that he can start them again.
December 22, 2010 at 9:16pmStacy Derr- Walker does he communicate w u...i mean as good as he can? sounds like he is progressing.
December 22, 2010 at 10:58pm
Kathleen Quinn-Farber
He is nodding yes n no to questions, following directions, giving ok sign n thumbs ups. I tested his very short term memory and thats there, like for stuff in same day, and he knows who i am and his family. He remembers how we hold hands, he hugs me. Until he can talk we wont know too much more. I pray he doesnt lose his gift of gab cuz that would kill him. Right now he is just perpetually moving all over and i do fear he often has that look like the lights are on but nobodys home. He is still considered in the normal phases of coming out of the coma tho. Jus keep praying stace
December 22, 2010 at 11:16pmStacy Derr- Walker will do kath. this whole story is amazing on how he is coming thru. it will all be ok. cud the meds b making him seem like he is zoning? sounds like it may nt b long w the vent?? i will keep u all in my thoughts n prayers. hang in there. hugs!
December 22, 2010 at 11:22pm
Kathleen Quinn-Farber They are weaning him longer n longer off the vent. He still gets oxygen thru the trach collar when the vent is off. He really does good with it off, jus that he is still coughing stuff up and that drops his saturation level. And the reason they want to get him back on all his anxiety etc meds is cuz they believe those will help him calm down and stuff.
December 22, 2010 at 11:29pm
