Here's Danny's newest images of his revised VEPTR ~ From this view I can notice a very different placement of the VEPTR rods. I can only hope that it's an improvement for the better and he won't be in this predicament again. Sorry I didn't update yesterday but it was an exhausting and emotional day here. It didn't start too well, BUT when starting at the bottom you can only go UP. Right?
Danny woke up yesterday with the persistent fever he went to bed with. His poor heart rate was just a racing! I don't think he really got a restful sleep when his heart was beating like he was running a marathon, instead of sleeping. The doc put him on some BIG dog antibiotics in hopes that if something is brewing we can nip it in the bud. They ordered a few more blood tests to run and unfortunately the brand new PICC line wouldn't draw. UGH ! Danny's urine output came to a stop and what did dwindle out was not so nice in color. In addition our attempt to to start feeds yesterday failed miserably. I just wanted to crawl back in bed!
A dear friend of ours is here on another floor ~ Alex is to gain his wings today. It has been a long hard road for this amazing boy. He always had a smile on his face, a webkinz at his side, and a huge heart. Today we will lose a brave wonderful boy but the heavens will gain an amazing angel. My thoughts n prayers are with his family today.....I can't even imagine how difficult today will be for them. Something I wish no parent should ever have to go through. I hope Alex can finally be at peace and his family can find peace in their hearts. Spread your wings and fly sweet boy! Please feel free to check out Alex's CB site I felt very honored that his family allowed me to go in to talk with him yesterday morning and say my good byes. You'll have a special place in my heart Alex....ALWAYS!
Yesterday afternoon I requested Danny's second enema and all I can say is "The Ileus has left the body", heehee. WOW ~ I don't think I've EVER experienced a Code Brown that large, EVER! Right after his blow out it is was like a switch was turned off and his fever dropped and his heart rate went back to normal. His nurse put TPA in his PICC line and within a matter of minutes, Wha La it drew once again. So yesterday ended alot better then is started!
Last night went well for Lil Man and today he continues to chill out. So "the plan" is to get discharged tomorrow morning some time. We'll be going home on TPN once again and unfortunately back to ground zero trending back to g tube feeds. We've attempted a slow rate of formula again today, but I'm not sold that it's working yet. Time will tell and at HOME we have ALOT of time :) My hope is that the next update will be when we are home...... as always I will keep you posted with what's going on.
Dan and Avrianna have been busy this week. Avrianna has been a wonderful help to her dad while we've been gone. Today they both went in for eye exams so I can't wait to hear if they need new glasses or not. Today is Miracle Treat Day at Dairy Queen....as if they need a reason to go get a blizzard, but I'm sure dad will get roped into getting her a special treat.
Closed for the Holiday Weekend
19 hours ago