Sunday, July 21, 2013

Long Long Days

It has been a long couple of days.  Sleep is at a minimum for everyone!  
All is great with our troopers but both are in incredible pain.  The morning after sugery, Alexa had a chest x-ray and an ultrasound done.  Neither raised any significant concerns and so her breathing tube was removed, and her sedation medications were reduced.  She slowly started to come out of sedation and ithings got tough for her. From about 12 noon to 7 am the next morning she was in cycles of deep sleep for 3 minutes at a time, followed by 30 seconds to 1 minute of being awake where she would literally fight us to pull out any and all tubes that were witin arms reach. She was incredibly thirsty and only allowed to suck water off a sponge, angering her a lot. They were trying to find a balance between enough morphine to mask her pain but not too much so that she would be a bit more coherent.  Finding that balance was difficult and no amount of research can prepare a parent for watching her child suffer like that.  
In the PICU, from 7-8am, nurses areon switchiver and patients cannot have visitors.  I knew that after the day and night we had, she was going to give the nurses a run for their money with out me there--and that she did.  When i was allowed back in, there were 3-4 nurses trying to hold her and bloood everywhere--she had ripped out one of her IV's. Luckily it was an extension one so although looked bad, it did not have to be reinserted, just cleaned up and re-secured. But I was not too thrilled with them.    By some sort of devine fate, the PICU had a shortage of nurses, and so they sent nurses from the tranplant ward to come and take care of her.  And that they did...they rearranged her lines, got her settled with medication and arranged discharge and transport to 6A (transplant ward). We made it out of intensive care in less than 36 hours after surgery!  Pretty darn good for my princess!
We settled into our room and Alexa was able to sleep better and for longer periods.  Her awake periods in which she is screaming in pain, are slowly becoming less frequent.  Last night she got some good sleep periods of 3-4 hours each.  The hard part is anticipating her pain and getting her meds early enough to ensure she does not experience much pain.  She no longer has a nose tube as she pulled it out in the middle of the nght while mommy dozed off.  Doctors decided to see how she does without it before placing it back in.
This morning she seems a bit better pain wise--she did some facetime vwith daddy and that brought some good smiles.  Although, it might have worn her out as she is now in some more pain and trying to sleep.
As far as her new liver goes, so far so good, it is working wonderfully.  All her liver functions are coming down, some a bit slower than others, but all decreasing which is good.  They were doing a lot of ultrasounds because one of the initial ones was not showing very good blood flow, but since, it has improved a lot.  They are still monitoring it, but Dr. G is quite happy with her.  Metabolic wise, 1 day after tranplant and that pesky citruline which was always in the 3200 to 3800 range was down to 1000. They have not run amino acids since, so Monday will be interesting to see.  Ammonia continues to be under 40 with TPN (nutrition) of 1g protein per kilo and no metabolic meds! Amazing!
Managing her pain and controlling her sneaky attacks to pull out a line has become our biggest and hardest battle.  Hard but not too shabby considering she just finished a major surgery.

And across the street, everyone is so surprise by how great Christian looks.  He is eating--although not as much as he wants. He is walking--maybe a little too much as he is in a lot of pain too.  I do not have as many details as i have literally seen him 3 times, once per day since being out of surgery.  Alexa wants me by her side, A LOT, and daddy would not have it any other way.  I just spoke to him, and the plan is to have him brought here to see his girl this afternoon!  AND there is talk of possible discharge tomorrow!!!  4 days post surgery!  

Seriously--my two are such champs!  Love them to pieces!  

We will all be reunited again soon!


  1. I love Alexa's strong spirit, but hate that she is fighting through pain. I am sure that each day will get easier, and Lord willing you can get some better sleep soon! I know you'll take lots of photos of Daddy and Daughter reuniting, so I don't have to ask-but I am so excited to see how it goes! Dear God, please please help Alexa to be calm and serene when her Daddy visits so that he will be reassured and comforted" Amen.

    1. Mindy, thanks for sll your continued prayers. I will have every and all cameras and photographic devices out in full effect....lets just hope daddy approves some of them :)