4/13-4/14/12 (morning) - Friday the 13th - Fresh Beat Band and port problems

Friday, April 13

The Fresh Beat Band



Talking on The Voice



Mason and Twist chatting

Kiki and Haylee talking on The Voice

Haylee and Mason watching and listening

Mason and Twist

Mason and Haylee with The Fresh Beat Band

The Fresh Beat Band

 Today started out like just any other normal day we've had so far.  We slept until about 9:30 or so.  Lindsay from Child Life came in to let us know that The Fresh Beat Band would be down at The Voice today at 2:30.  I called Adam to have him bring Mason down to meet them with Haylee.  Haylee went and  played in the playroom for a little bit before school at 12:30.  She's completely caught up with her school work.
We went downstairs around 2:30 and waited for The Fresh Beat Band to show up.  They were caught in traffic so they were an hour late.  It was so fun meeting them!  They were super, super nice :)  Mason was star-struck meeting them, especially Twist.  He kept talking to him every chance he got.  He told Twist and Shout that he knew one of Twist's songs and even sang it for them...they chimed in too!  Haylee loved talking to Kiki. 
After they left and we said our good-byes to Mason and Adam, we went back upstairs to have Haylee's port de-accessed.  She was actually able to take a shower!!!  She was soo excited about that.  She bled a good bit from when it was de-accessed - through gauze and folded gauze and a bandaid.  When she was done, the nurse came in and put the EMLA cream on her to take away the needle prick when they re-access it.  She continued to bleed a little when the EMLA was put on but the nurse said it was normal.  Brittany from Child Life came in to help distract her from the port access but it didn't work very well.  I stepped out just before they did it because I didn't think I would be very helpful and to be honest, I just couldn't do it.  I could hear her screaming and crying in the hallway.  It's so hard to hear your child scared and in pain and know there is nothing you can do about it.  It seemed like it took forever to get it done.  I stepped back in as it was over and she was crying so hard she was shaking.  They flushed her and she was saying it was burning.  The nurse checked to see if she was getting blood return and said she was and that maybe it was because she was so upset and it was still sore.  Haylee calmed down and was fine afterward.
My friend, Meth, came for a visit with Haylee and I.  We had dinner together and played Yahtzee.  Our night nurse, Heather, came in to hook Haylee up to her anti-fungal and when she went to flush her, she started saying it was burning again.  Heather went ahead and hooked up the meds and Haylee was complaining still of it burning.  About 10ccs went in and Heather stopped the meds.  She checked blood return and it was fine but noticed she was swollen around the site.  Once I mentioned about the bleeding from earlier, Heather called in the charge nurse to get her opinion.  They thought it was possible that the needle might not be in all the way because she could have a hematoma (a bruise) around the port they were getting the blood return from.  The steps were to have Heather try and push the needle back in and if that doesn't work, to have an X-RAY to see what's going on.  Heather tried to push it back in without any luck.  Haylee was in pain from Heather pushing on the site and was screaming.  We told Haylee she would have to go down for the X-RAY so we could see what was going on.  The X-RAY showed that the needle wasn't in place all the way so Heather de-accessed her and the bleeding started again.  When Heather saw the bleeding, it really confirmed to her that the hematoma was what was going on because of the color of the blood.  She also thought that the needle wasn't long enough to go through the bruise into the port because of the swelling so they would have to use a longer needle tomorrow.  The flushes and the little bit of medicine Haylee got would just be reabsorbed into her body and it wouldn't hurt her.  Haylee had to wear an ace bandage wrapped around her to hold heat packs in place over the site to help the fluid reabsorb and the swelling to go down.  The doctor on call said she could skip her anti-fungal until tomorrow when she was re-accessed.  By this time it was around midnight and Haylee went to sleep just after.  Meth stayed with us during all this and I want to personally thank her for sticking it out with us!!!

Saturday, April 14

Since it was late before Haylee and I got into bed, we slept until after 10am.  She had a rough night, poor baby :(  Dr. Pauly came in and checked her out.  I requested from Dr. Pauly to have Versed given to help her and she said 'no problem'.  The port site didn't bleed through the night - what a relief!  Our day nurse, Mildred, let her get up and awake and around 10:30 came in to put the EMLA cream on her site to have it re-accessed.  She promised Haylee she would let it sit for at least an hour and that helped ease her mind some. 
Haylee made 'Get Well Soon' cards for everyone on the floor and went around to put them on their doors.  How sweet :) :)  She got a response back from the girl next door to play in the playroom later on.  Even the doctors and nurses commented on how sweet it was!
Around 11:50, Mildred came in and gave her the Versed and said it would take 15 minutes to kick in.  Leah, the charge nurse, came in to place the needle to make sure it was done right this time.  I stayed this time to stand in for Child Life, who doesn't work on Saturdays.  Mildred and I helped to calm Haylee and make sure she didn't get her hands in the way.  Haylee did FANTASTIC!!!  She whined some, more out of fear I think, but Leah was able to get it in right away because they used a longer needle.  Haylee layed around while the Versed wore off.  A co-worker of Adam's, William and his wife, came by to meet and visit with Haylee.  She was still a little loopy but ended up coming to before they left.  Haylee and William played Jenga, per his request, and 'Rock, Paper, Scissors' and before too long they were coming up with some real whoppers to win...volcanos, hurricanes, tornados, earthquakes.  It was cute and Haylee just laughed.  They were showing her pictures of their cats and the bird nests they have in some of their plants at home.  It was a nice visit from them. 
Nonna showed up around 2:15 to stay with Haylee.  They were going to have a busy weekend with all the stuff that was going on there plus, they were going to make cookies for the floor. 
 

HAPPY BIRTHDAY TO ADAM!!!  HAYLEE, MASON, AND I LOVE YOU BUNCHES!!