Wednesday, April 10, 2013

potentially long week.

i have a lot of photos coming when i get back to my work computer, but for now im on the laptop and i can just blog this way.  i have a lot of amazing pics from bluebonnets and disney on ice (omg. so fun.) but first, i'll do a total update on reese.

1. we havent had to give DDAVP (the shot) in weeks. i really dont even know how long its been, honestly. a long time.

2. i finally looked at the last MRI and there's a lot of fluid. its so strange bc she is acting better than ever. but as they said, kids' brains are amazing so who knows. MRI on monday so prayers for that please. i'd like a miracle, personally, to where it was just reabsorbed and BAM thats it. :)

3. my tuesday sucked. bottom line. we went in for labs before her ABR (sedating hearing) test. so i drove downtown at about 7:45am (ugh traffic) and got there in an hour. we went to chemo clinic where they were going to do labs and order chemo so after the ABR, we could just come right back up and get vincristine and go home.

instead, we couldnt get any drawback on her port. nada. its usually hard to get blood as her port is super positional. we have to basically fold her over and almost tip her like a teapot, but this time... nothing.

so they put a chemical/med thing (TPA) in her port line to see if it was a clot or blockage and it would "break it up" a bit, if that was the case. we were admitted downstairs, checked in to pre-op for the test, reese took a nap on me. then she got some versed (snicker. go home reese, youre drunk). and then she went to her test. they gave her an IV after they put her to sleep with gas.

so we went to clinic afterward with the IV. i felt horrible bc i forgot to tell them that she has a weak right hand. so they naturally put the IV in her left hand :/ so it was hard to navigate her bottle. when we got up to clinic, they took labs from the IV and then we had to figure out what to do with the port.

we went down to get a dye test. they brought the xray thing over her, and before we put the dye in, they saw that her port was not in the vessel anymore. uggghhhh. that means new port.

we go back to clinic. we have to make a decision. they CAN give chemo through an IV, but there are risks. one thing is that they needed a new IV. the second thing was the it has potential to burn the skin from the inside out. but the risks are a lot lower with a new IV. after talking to the oncologist, with the amount of vincristine reese gets, this week was okay to just skip. we get more vinc next week with "big chemo" and so often that it was not a huge deal.

i called EJ and we went ahead and said try an IV. i wanted the vinc. it made me so nervous to just say "meh, skip chemo."

so i held her belly to belly over me, sort of like a baby. and had her blankies on me. they numbed her hand, brought in the IV team and went ahead.

it was horrible.

they had gotten it in and could get blood, if needed, but it was not "chemo appropriate" at all.  and with the risk of the burn, we had to try a second time. same thing the second time. by this point, reese had screamed so much (mainly from being held down, but also the whole situation was overwhelming) that she was dry heaving and i thought she'd black out. we all looked at each other, ended it, took out the other IV, and said no vinc this week. no more. it was now 5pm and it was time to go home. time for her to relax for the day, not be prodded, tortured, done. i felt good about it.

she will have to get a new port before chemo, so hopefully monday before her MRI. then we'll stay there, likely, do chemo, and then figure out what to do, if anything, about the fluid.

next week has potential to be very long. prayers needed, my friends. for strength, for reesey, for healing. you guys know how to pray the best kind of way. ;)


#reesey #gingerfight #thehospitalsucks #ABRtest Lol squishy face #reesey #gingerfight #sleeptight #reesey watching #spongebob it's been a long day #thehospitalsucks


  1. Poor, sweet baby girl. Hard day for her and hard day for Mommy, too. Lots of prayers in the coming days. xox

  2. Praying for all of you! Praying that the fluid is gone and praying for a better week next week. Hang in there and take it one day at a time!

  3. Ugh, heartbreaking for anyone, triple hard for a baby :( thoughts, prayers, love, and lots of hugs from us!!

  4. This comment has been removed by the author.

  5. ((hugs))

    Hang in there mama. We'll be sending up prayers.

  6. Always praying for that sweet girl!

  7. Aw, that is the worst feeling in the world. :( Will be praying, as usual!

  8. Oh dear. Praying. A lot. Be strong!

  9. I am so sorry for all of the rough times! I pray that God performs the miracle you asked for and then some!

  10. You are a light in the world. I'm so sorry you had such an awful day. Reesey is so lucky to have you as her momma. Keep fighting, keep your chin up, all of you motivate me to fight harder with grace.


  11. Oh my word. What a day... I'll be lifting Reesey in my prayers!!!

  12. Lifting your family up in prayer.