Tuesday, July 30, 2013

Home and Unpacked

What? Come again?!?
Yes, you read that right!  12 days after receiving a liver transplant, we were discharged and are home and unpacked. 

Okay, let's rewind because it has been a busy couple of days,...

It seems that the central line in her neck was probably the biggest reason behind Alexa's inability to sleep through the night. Since it was removed and the PICC put in, her sleep has consistently improved...this makes for one very happy mama!  

Saturday everything was looking great (lab wise) so we were given a day pass.  We were let free at11am and had a curfew of 8pm for her medicine and IV hookup.  A whole day to go off, and be hospital free.  And it seems that was just what miss alexa required to change her grumpies....she was in some pain but oh so happy to get out of the confines of her room.
As soon as we got into the car, her entire mood changed.  She was laughing and talkative.  We decided to take her to the movies.  Along with her some of her closest cousins, she watched Turbo in 3D while enjoying some poutine--WITH cheese and I might add that she LOVED it!  

Turbo was a hit!

After the movie, we all went to have dinner at the Rainforest Cafe.  Where else can you sit four preschoolers under 5, three teen/pre-teen, and six adults without getting arrested for excessive noise disturbance?  We had a great time.

Maybe too good of a day...on Sunday Alexa seemed more tired and was a lot more cranky than she had been the previous day.  We were granted another day pass but decided to just go home and rest in our own beds.  In the afternoon, I got a call from our home care coordinator who was arranging for our home care nurse for when we were discharged...she seemed to think that we would be discharged the next day....that was news to me....
It was confirmed when we got back to the hospital that night.  If all was well with Monday mornings bloodwork, we would be going home....

Well Monday came and I knew from the beginning it would not be our day.  She was too tired, sleeping most of the day, when she was not sleeping she was so very upset with her stomach pain.  Morning labs showed glucose at 2.8... That is extremely low...almost requiring IV intervention but we gave her lots of juice and breakfast and that seemed to do the trick to bring it back up into the normal range.  Then the rest of her labs came back...Her white blood count came back elevated, add in that her temperature was trending upwards.  Well all that was enough to put discharge on hold for observation and re-evaluation in the morning.

Throughout the night her temperature went back down into her normal range and labs this morning were great.  WBC was back in the normal range and glucose back up in the normal range....they were quite happy to give us our discharge papers.  And that was enough to bring a smile out of miss cranky pants!

We are now unpacked, settled and getting used to this new routine.  

For a couple more days Alexa has a nurse visit 2 times per day to administer and IV medication.  As of Friday that goes down to once per day.  For the next little while, we also have lab work scheduled at the hospital every 3 days. And every two weeks for the next 3 months we will have a 4 hour IV infusion at the hospital.  Not to mention the approx. 10 oral medications that Alexa will be on for the next 3-6 months before they start tapering off....

As for food, I would love to report that Alexa is trying all sorts of new foods.  But that is just not the case YET.  She just does not have a great appetite with being in pain.  The morphine either causes nausea or constipation, so she is not interested in food.  She has tried a couple new things, but most of them have been forced or hidden into a liked item....we will continue to work on her slowly and give her time....this is all very new to her, and because she looks so good, we forget that she was just transplanted a mere 12 days ago.  

Alexa has proven again just how strong she is.  When we initially started the transplant journey, we were told she would be in hospital for about 3-4 weeks.  That was average.  We would be in the PICU for 2-3 days.  That was average.  Well Alexa proved them wrong on both counts, cutting their estimations in half.  Why or how she seemed to do this?  That I am not quite sure of.  Was it luck? Prayers? The medical team we had?  
Maybe it was all of it combined...the perfect timing, the perfect liver, the perfect team?

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