Today was a bummer for me personally, as I woke up feeling as though a cold was brewing. Tonight I think I have a handle on it but I\u2019m not taking a chance with Chloe. It\u2019s the wrong night to take off however, since Sandy left for home today and now Dana will have to pull a double shift. This is something she definitely doesn\u2019t need. I think I caught things in time to be able to get there early tomorrow and give her a break.<\/p>\n
Chloe had a hard workday. Dana has been concerned with the number of chest x-rays they have done on Chloe; Rightfully so as it\u2019s been many. That little body of hers doesn\u2019t need that much radiation. So the new PICU doctor agreed to limit them. She\u2019s had 24 x-rays and scans. However, there is more stuff in her lungs. The number one concern with that is she could develop pneumonia. She already has an infection in there that they are fighting so we don\u2019t need the big bad ugly one!!!<\/p>\n
For some reason today her heart rate has been pretty high and the BP has been way up there. They are treating her for the BP with meds but I\u2019d like to know why it\u2019s up there in the first place. It\u2019s far enough out from the surgeries that I\u2019d think it should have settled down by now. It comes down but I don\u2019t like seeing it up to 158\/130 +\/-.<\/p>\n
She was in a chair today for over four hours and breathing on her own. At the end of that, PT saw she was beat and left but OT did some work with her. At the end her O2 was down to the high 80s rather than the 100 where we are comfortable. When that happens she needs to take some deep breaths or she needs to go back on the machine.<\/p>\n
Our wonderful cheerleader rep, Sarah, came by today and made a \u201cJourney Bead Necklace\u201d with Chloe. For the number of days she was brave she held up 10 fingers. For the number of days she was angry she held up 10 fingers. For the number of days she was scared she held up 5 fingers. She gets beads for each of those feelings and she also got a special \u201cSpirit\u201d bead on top of it all. Like Dana points out, she\u2019s a Fighter; same number of fingers for Brave and Angry.<\/p>\n
This report is a 5pm report and Chloe\u2019s BP is now 143\/76, still high but not as scary. Her heart rate was 133 and is now down to 128 but up from 109. She does this roller coaster all day. At this moment she is watching a DVD, \u201cCharlotte\u2019s Web.\u201d <\/p>\n
Earlier Dr. Dorsen arrived and was \u201cpractically jumping up and down\u201d per Dana\u2019s report. He did a Rah, Rah, Rah with his arms and said today was a day of high excitement. For him this is a Biggie! He was ecstatic that she went 4 hours off the machine. \u201cThat means she can go 6 hours and more.\u201d As he was leaving he told Chloe this: “Chloe you know we love you and its important for those we love to do well…that\u2019s your mission\u2026 to do well.\u201d That\u2019s another Biggie for Dr. M.D. Way to go Aussie. <\/p>\n
So that\u2019s what I know from afar. It\u2019s all I can do to keep myself from going to the hospital tonight but I know it\u2019s better safe than very sorry. I wish we had Scape set up over there so I could talk to her at least. Maybe I\u2019ll work on that and see if I can figure it out. <\/p>\n
The plan is to get her to the unit after the trach change on Wednesday. So let\u2019s all see that happening. If you pray, pray. If you visualize, visualize. If you use Voodoo, use Voodoo. I don\u2019t care what you call it, as long as it works. They said we could expect one step forward two steps back. I say we can expect three steps forward and a little sway toward the rear if needed. <\/p>\n
Blessings,
\nRon <\/p>\n","protected":false},"excerpt":{"rendered":"
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