The Winding Road

It has been brought to my attention that I haven't blogged in 2013.   Yeah, I know.  I tried to write something a few weeks ago but was just stuck, and that rarely happens to me.  I usually have things to say and I always know exactly how I want to say them.  Sometimes I don't have anything in particular to yap about, but as soon as I start typing the words flow.  I had an idea, but I just couldn't put the words to it.  I do still have that blog in the works, but we'll move forward.

I have also been battling a cold for most of the new year.  It thought it went away, but I either immediately picked up something new, or it was just pretending to leave.  I think I'm finally on the mend now.  So excuse number two is, I felt like crap on a cracker.  I didn't even go out to see my dog last weekend, and that never happens! 

Then we get to reason number three.  Sometimes life just gets to real, and when I write something down, for whatever reason, I can't escape from it anymore.  I'm good at wall building and pushing things aside to deal with another time, but when I write something,  I can't escape feeling it.

So here goes. 

My niece Cierra, who has down syndrome, picked up a cold around the holidays.  Two weeks ago she was hospitalized, and after she turned blue and keeled over on her hospital bed, they diagnosed it as full blown pneumonia.  She was put on a ventilator to help her breathe.  My sister and her husband were right there when that happened, and were impressed with the quickness of the staff, but I can't imagine what seeing something like that does to a parent. 

Time is kind of blurry to me.  I visited that Saturday and Cierra was out of it.  They kept her sedated so that she would sleep, heal, and not fight them.  All of the cultures have come back negative so they have no idea what bug she is fighting, and are treating her with three broad spectrum anti-biotics.  My sister text me before I went up with my youngest brother, "Be sure David understands that she has tubes coming out all over the place, I don't want him to be upset."  I told him in the car and we had a good laugh.  Apparently he is ten, and no one cares that I have to see it.

Early that following week when they tried to take her off the vent, it didn't work.  She just wouldn't cough up the gunk and breathe on her own.  "Can't you tell her to cough?" was the Doctor's question.  "You can, but she either will or she wont." my sister replied.  "Just how developmentally disabled is she?"  Now my sister was polite and gave the correct answer of "severely", but that is where I would have lost it.  READ THE DAMN CHART.  It bothers me that Essentia does not have her primary doctor as part of their ICU team.  Cierra has had well over ten specialists, and probably six or seven right now.  Her pediatrician is the ONLY doctor who knows everything about CeCe, inside and out.  She should be in on everything, that is one f....ed up policy.  So another vent tube had to be put in.

I wanted to visit on my Tues morning off, but was running a low grade fever again and sneezing.  I ended up being away for a whole week.

CeCe was doing pretty well, the meds hadn't totally cleared her lungs, but less and less infection every day.  There were even hopes of the vent coming out again toward the end of the week, until the wee hours of  Friday morning when her arm restraint wasn't tied tightly enough(insert Auntie eyebrow raise here) and she pulled the vent half out.  So the techs had to remove that one, and yet another tube had to go in.  The doctor explained to her parents that they couldn't keep putting tubes in her lungs, the infection risk was pretty high, so it was decided that  she would have a tracheotomy, which she did, yesterday.

I was finally able to go and visit her today!  The doctor is starting to back her off the sedatives, so I was hopeful that she would be awake.  When I walked in and said a loud "BUTTS UP CECE?" (which is our common greeting......someone taught her how to say butt....)  she turned her head and looked straight at me.  Then of course she tried to sit up.  That is the problem.  Not only is she seven, but she's CeCe.  She has to be restrained so she wont yank out the tubes.  She isn't going to listen to "don't touch that."  Her feet were also restrained, but they are loose now.  Once after a surgery she actually pulled the breathing tube out with her foot.......  Cierra is off of her "anti CeCe meds" so she will be agitated and combative.  She needs to come off the sedation, but it's going to be a huge challenge.  CeCe kept waving hello to me with her little restrained hand, and I would wave back. It was good to see that she knows who I am, but to see her like that...........rough stuff.

Now we wait, which is pretty much all anyone has been doing this entire time. My sister has been home once to shower and visit with the dogs for a couple of hours, she sleeps on a little bed in CeCe's room, and showers at the hospital. Her husband, luckily, has a lot of personal days and vacation so he's able to be here right now. (railroad and works out of town) CeCe is hooked up to the vent through the trache. She will be the one who determines how things go from here. It's easy enough to plug the trache and see if she will breath on her own. When she can, the vent comes off. Then she will do the breathing, but oxygen will be hooked to the trache. The next step will be no oxygen, just room air, then hopefully the traech will be removed. It's going to be a long process with at least another week in the hospital, after that, depending on where she's at it could mean a hospital bed and nurses at home.

Many people have offered thoughts and prayers, and friends and family alike want to know if Kate and Tom need anything, or if they can do anything for them.  There isn't anything really.  It was driving me nuts to be so helpless, but now I'm checking on the dogs midday, so at least I feel useful.  I also figured out something they could actually use, but I can't say what because they haven't gotten it yet. :)

Cierra's room is filled with cards from her classmates, that her teacher hand delivered, and the teachers from Bryant sent a large donation for food money for Kate and Tom, which was unexpected and very sweet.  My preschool pals at UCC drew her some pictures, and she, her Mom, and I looked at them today. 


So that's where we are now, wandering down a winding road.  It's long, and there are twists and turns, but we are making forward progress.  They are talking about taking her off the antibiotics tomorrow.  CeCe's right lung is clear, but there's still some infection in the left.  Hopefully the vent will be off in a day or two also.  Many of you are fb friends of mine, so you've seen the updates.  If you have taken a moment out of your life to pray for Cierra and her parents, I thank you.  ♥  I send them back for you and yours every night.