This morning started out a little rough for Miss K. She no longer has access to any lines and therefore IV team spent far too long in our room this morning. Too many veins have been blown out this last week and they can no longer get ANY IV access to her for blood draws. The poor girl has bruises everywhere. I think they tried 5 or 6 IV's this morning. So therefore, cardiology requested that all morning labs be canceled. We will just keep our fingers crossed that things will continue to be stable until Friday. She has a junky cough and some fluid in her lungs but is keeping her O2 levels where they need to be. So far they are just watching it.
Tonight she is TRYING to get her last IVIG treatment before heading home, but the darn IV is shot. Knowing that she has no more access. We are ready to have her stand on her head to see if it will work long enough to finish. Fellow tx moms who's kids have needed IVIG, does it make your kiddos a little grumpy? It seems to do this with Kaidence. She just wants to be left alone.
Other than that, she has had a great day. However, we now have a problem. After getting to order whatever she wants and whenever, riding a bike around, driving in her little police care, glitter, painting, coloring and bubbles.......Miss K informed me tonight that she does NOT want to go home. WHAT THE HECK?????? I told her that I was sorry, but mommy was ready to be home. I haven't been home since August 1st. Not even stepped in the house. So to my fellow PCMC frequent fliers....stay away from child life and don't let your child have any fun when they come. What kid doesn't want to leave? Obviously she doesn't remember being intubated, the talk of crashing her onto ECMO or her mom once again pleading that she not die. Maybe they should have wasted some of her drugs on me, I wouldn't mind not remembering.
BTW, am I the only mom that finds herself living on 'uncrustable' PB & J sandwiches when here? That's all I seem to eat. Is it because it makes us feel closer to home and our daily routine? I think it must be.
Oh Kaidence. Your mommy loves you so. You make smile, you make me laugh and you also make me want to cry some days. Thanks for being who you are BUT, I am NOT letting you stay tomorrow!!!
Homiecoming and trunk or treat
2 weeks ago
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6 comments:
Not wanting to go home is a good problem to have. I am so sorry about the lack of access, that is not fun. I hope you get home soon and get to stay in your own beds. I am so glad she is doing better!
Sydney never wants to go home. One of her last visits she tried to negotiate for a tv in her room or she was not coming. I could have screamed! It does get better I promise.
Ang
Yes IVIG makes Mason feel lousy and grumpy too :( Hope you get to go home today!! But if not, Mason and I will be there to visit you tomorrow. Prayers still coming your way.
Love,
Mason and Mommy
We will pray that she will go home soon. I can't imagine why she would want to stay. Maybe she is loving all the attention
Yep IVIG makes them feel kind of crummy, but goes away and then they feel better =)
Know the feeling about Child Life! Not sure how I'm going to keep mine busy once we're home, haha.
Glad to see you guys off the white board!! wahoo!! Heart Hugs
I hope that things have gotten better. I got your message about Heart Camp, but could not access it because of no cell coverage until after I left the camp. I hope thing have all settled down some. Ifigured it was probably just to much to do it all.
(HUGS)
Carolyn
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