Day 2 of recovery

7/2/14

4:30 PM

Today Alexa is doing awesome!  The hospital is the absolute best, other hospitals really should come take lessons from them!  We had our team mtg with the group of doctors this morn & made the plan for the day.  They actually want the parents to get involved & come to the mtg & tell us that we know our child better than any of them so to let them know anything that we think they should know.  They even ask us questions about things all throughout the mtg.  Quite a different experience than the one we had in Primary Childrens Hospital!!  Her blood sugars have been absolutely perfect so far but they have started feeds thru the tube in her stomach & they said they expect them to go a bit haywire with that.  Dr. Chinnakolta told us again how pleased he was with her surgery & the islet yield & said he expects a quick recovery!!!!  Miracles are happening!!  It has been an extremely hard day also.  Her bowels have been moving, way, way, way too much.  They were worried about constipation, which is very common after this surgery so they were giving her Miralax & it has been working a little too good, which has been really hard on her.  Let’s just say, I’m sure glad I’m not a nurse!!  She has also been extremely SASSY today, haha!!  The dr said she could get her NJ tube out of her nose & the catheter out of her today & she was happy about it but also pretty nervous about it.  She had previously had a couple of feeding tubes down her nose & had pulled them out herself & they were really long & it hurt, she didn’t realize that this one was just in there as a drain & wasn’t as long.  She kept insisting that she wanted to be sedated when they pulled it out.  The kids at the Ronald McDonald house who had had this surgery had told her that they didn’t remember anything in the NICU cuz they were so sedated.  She kept telling the nurse that she wanted to be sedated more cuz she could remember everything & she wouldn’t forget it ever.  I also had a friend on facebook who had this surgery quite a while ago & she said this:

Here is the great thing- she won't remember:-) I had the same thing happen and the docs told my mom (in front of me) that I wouldn't remember. My mom said I looked at her and said "I am going to remember this for the rest of my life" and I don't. I don't even remember saying that! I don't remember ICU at all- I started to remember around day 6 in a regular room:-) thinking of you during this journey, the fear and anxiety of it all is over and now she just has to get better. God bless!

That made me feel much better.  She just keeps on saying over & over, “They told me I would be sedated the whole time I was in here & I haven’t been even once!  I’m going to remember every single thing!!”  Then later when the nurses were talking to her about taking out her catheter she said, “No, not now!”  I told her that the dr said it needed to come out today so she might as well get it out now since the nurses were cleaning her up right then.  She got really sassy with me & said, “Well I’m not you & I want to wait!!”  She was able to get up to go to the toilet which we thought was a huge accomplishment & then the “meanie” came, PT (Physical Therapy.)  She had her walk clear to the nurse’s desk & then sit up in the chair for about ½ hr!!!!  She is such superhero & I was so proud!!!  Ty had gone to the cafeteria for a bit & when he came back & saw her walking he couldn’t believe it!!  She did a lot of complaining & it was really hard but SHE DID IT!!  As she was sitting in the chair watching TV with Ty & the movie ended, a little survey came on the screen & Ty hadn’t even noticed.  Suddenly Alexa said out of the blue, “No, I’m not satisfied.”  Ty looked at her & said, “You’re not satisfied with what?”  She said, “I’m not satisfied with my pain management.”  The nurse, Katie, who is really nice, looked at her & kind of laughed & her & Ty both looked at the screen.  The screen said, “Are you satisfied with your current pain management today?  Yes or No”  It wouldn’t let them switch channels till she answered the question so the Katie went to do it for her & said, “So do you want me to answer a no for you?”  She sat there thinking for a bit & I guess she felt pretty bad & said, “You can put yes.”  She’s sweet even when she feels horrible…….sometimes, haha!

If anyone wants to send a card I’m sure she would really like to hear from you.  You can send it to Univ of Minnesota Amplatz Children’s Hospital, Unit 3, 2450 Riverside Ave, Minneapolis, MN  55454.