Ironic

  This morning Grace woke up almost in a panic, it was like she was struggling to breathe. Her throat hurts so bad. She looked me straight in the eye and said, “Is it my fault. ”  I cried for 2 hours straight…How do you explain Cancer to a nine year old?

   I’m trying to be strong and not let her see me scared… but I can cry in front of her to let her know it kills me to see her in pain. She cried as they drew blood ( she really hates needles) from her hand today, looking to me for strength…. I just told her to breath and squeeze my hand as she looked into my tear filled eyes. 

  This morning was the first time she said her stomach hurt. She still has the epidural in. It should be blocking the pain. The NG tube (Nasal gastric tube that is coming out of her nose) had dark fluid/blood running through it. They believe it had suctioned/scraped her stomach lining causing irritation. She was given some Pepcid and some Valium. 

At 9:57am this is what her NG tube looked like… 

   

At 6:15pm After the Pepcid  

 The JP drain/bulb suction was emptied around 8am with 42cc, then again around 10am with 90 cc. That’s a lot.  It had a small clot in the tube which stopping it from draining properly, so when the clot passed, the fluid was able to come out rather quickly.  Now it is back to the normal drainage amount. 

Her foley/catheter wasn’t draining urine this morning, so they took it out. The doctor said if she didn’t void her bladder in 6 hours they would do more testing. I am very happy to report she did go potty! (No pictures of that lol)

I know as I type this, I type the problem and the solution, but as each issue occurred, it was scary, waiting to find out what is going on, how to fix it, is she going to pee on her own?  Today was a rough day. But I’m so proud of my Amazing Grace for powering through. 

They gave her a goal to get out of bed 3 times. Grace shook her head no… the doctor chuckled… and asked,”are you telling me no” tiny pep talk reminding her that every time she gets up it will get easier and easier… and just like that my girl was mind over matter again… They said not to over do it and two times out of bed would be ok but they would really like three. You know my strong-willed girl did 3 and made sure to point it out. 

She slept most the morning because of the Valium. When she woke up she was not in pain, all her tubes we working well, and she was ready to kick some booty playing war, trash and uno.I believe she was even giving a little sass to Ms Orndorff.

She is not running a fever, the wet wash cloth is a comfort thing I think. She had it first with the fever, then a headache and now just because.   She says she’s hot.. but ya’ll it’s freezing in this room. 

The breathing thing with the blue ball (yes that is my kindergarten teacher technical name for it)  is her BFF.  She feels better when she uses it. She uses it way more than they asked her to. They said ten reps once and hour. She has it in her mouth a lot. It’s almost like she thinks it has medicine. She says she needs it… she literally fell asleep breathing with it. 

Jennifer sent me a memory from her time line. 11 years ago today, we were in Boston, 11 years ago, I was fighting for my child’s life, testing Jenn because HCM is genetic. Not knowing what to expect. That’s a little ironic don’t you think. A little too ironic..and yeah I really do think…. The song has a line that  goes “ and as the plane crashed down, he thought well, isn’t this nice?”  Like Grace yesterday, in the chair when she finally fought threw the pain , sat down and said,” well this is nice.” 

This song, it may be my theme song for this hour. I can take an hour , while she sleeps and put my head phones on and listen to Alanis Morrisette. Because yes this is a little too ironic.