Friday, July 26, 2013

Things I will never get used to

There are just some things that I will never get used to, no matter how long I have been in the medical world and no matter how many times I have been through this before.
Alexa has been admitted to this very hospital so many times, far too many for me to keep count.  And although, I know the routine, I will never get used to feeling like a stranger in someone else's house when I am here.
Alexa has had to be out under anesthesia 3 times now.  Today she had to be put under to have her PICC line inserted and her central line removed.  Unfortunatly for us, the IGT ward where PICC lines are inserted is on the 2nd floor. To the right of it is the operating room where she was transplanted just 8 days ago.  In fact the waiting room where we waited today was the exact same waiting room where I was exactly 8 days ago waiting for that doctor to give us a report on how things went.  To the left of the IGT is the PICU where we spent the first 36 hours after transplant.  I was unsure of the unresloved emotions I had with those two areas until I was literally stuck back right in the middle of them.  Walking down that same corrider to go see my angel in recovery is just something that I will never get used to.
Trying to calm down my 5 year old in a pre-operating room because she KNOWS that something worriesome is on the horizon, is something else I will never get used to. 
Watching Alexa come down off of the effects of the sedation medications, watching her pain, her doscomfort, her agitation, is something I will never get used to.
Just because we all went through this last week with a major surgery does not make it anyeasier to go through today with a more commom procedure.  
All of this. I can just never get used to--its just not our normal....

Alexa's night have not been any easier.  Sleeping here is plain and simple hard.  She falls asleep without issue, but in betwen the IV alarms, the nightly infusions, the different medicines thw need to be administered, the vital sign checks.  Add in the discomfort she has from her incision and the disofort of the central line in the neck.  Well, would you be able to remain asleep?  She is up a lot throughout the night.  Everytime she is finally sleeping, someone walks in to check on something and wakes here is FRUSTRATING!!!!  Add to that a SUPER cranky child and you have one unhappy mama!  Yesterday was not the best of days.  She was a little happier in the afternoon and evening, but I was quite happy to put yesterday to an end.  Two things did brighten my day however.  Taking Alexa out for her exercises:

How could this face not put a smile on my face?

Secondly, Dr. G came by and mentioned that Alexa was doing so well that we needed to have day pass this weekend.  We will have to be examined tomorrow morning to make sure there are no glitches due to the PICC line going in, but plan is to get out of here for some hours.  
We have started with me administering her daily meds.  They have left a "home medication kit", filled with all her meds. I fill the syringes and check off that she has taken the medication.  The nurses check the dosing and sign off that I have gotten things right.  
Dr. G also said it was time to leave our comfort zone of this hospital and look at discharge for next week---WHAT?  Now, I know I said that I did not want to get my hopes up. But when the GI staff is telling you that you need to get home, well how do you not get your hopes up?  

Today Alexa was in a great mood (at least until the PICC line procedure). She worked on her bravery necklace amd played with her cousins.

Daddy visited with Alexa for a very long time.  He is feeling much better and looking fantastic.  But pushing a little too hard, too soon and draining himself by end of the night. I know he wants to get better to be here with us and I would love nothing more.  Watching him leave us today was just painful--we have never been apart this long.  But his health needs to come first right now...I will need to put my needs for support aside until he is healthy enough to be with us. 

Considering Alexa was unable to eat or drink anything because of the PICC line which was for 3:30pm, she was in a fantastic mood.  The insertion went well, but she was not happy when she got out of the procedure. Coming down off the sedation meds are difficult.  The cycle of sleep and screaming is difficult to watch.  She gets so agitate that it took TWO doses of morphone and one dose of gravol go calm her down.  And that led straight into the evening--when all the pains come back, it is when all the discomforts arise. It is when the frustrations of not being able to sleep come around again.  I just want to know that once we get home, things will get back to normal--that she will be able to sleep again without waking in pain?  It WILL get back to normal, right?

1 comment:

  1. Whew, I can only imagine how tired you are...but discharge next week? Girl, victory is on the horizon! I pray she gets some good, deep, comforting sleep so that her body can heal easier...and that you get the same so that you can rest your body, mind and soul too!

    I love the photos, she is still such an angel, despite her pain, I am thrilled for her strength and fighting spirit!

    Love you!