June 12, 2015

Surgery Update 2 (post op day 1 & 2)

Hello!  They came to wake Alexa up for a chest X-ray about 5 a.m this morning and she fell asleep after, so in the quiet of the morning I began typing a nice long update but unfortunately it did not save.  Hate when that happens. Now it's  almost 11 p.m and just getting around to trying to update again.  So here is kind of a summary of the last few days.

The first night after surgery is always the most critical and thankfully Alexa did great! All the her blood gases were beautiful and stable through the night.  In the morning Alexa started getting lines pulled left and right and she even got her chest tube out!  The only thing left was a couple of IV's being used for pain meds.  She also stood up and took few steps.  She was doing so great that by the afternoon they moved us to step down cardiac unit.  I was happy but apprehensive.

By the time we got over to our new room, she was looking a little more pale, weak, in pain and was  desating a bit during sleep.  All these issues were addressed and she did much better the next day.  She went walking a bit more, even went to playroom down the hall with her wonderful little brother.   Movement is very important in the the healing process so keeping her pain in check so she wants to move around is a priority.  She also ate a little bit more, so Thursday again was a good day overall until the night.  She began refusing to take her meds because of the awful taste, frequency of doses and they were upsetting her stomach.  I was able to get some things changed to chewable forms and she has done much better with those.  By the night we could tell she was having bit of a harder time and feeling emotionally drained

 In sorry but I'm nodding off really bad so just wanted to post this quick update.  Hopefully I can finish more tomorrow.  Hugs and love to all.  On a good note discharge has been brought up already! :)

June 9, 2015

Surgery Update

Thank you so much for all your thoughts and prayers today!  I'm sorry for the lack of updates but things moved really quickly after my last update and I got pretty busy with surgeon, Luke and just wanting to come back to see her.  As far as surgery, it went very well!   We were really happy with the results.  Everything she needed and we wanted got done!  She was able to receive a 20 mm conduit which is adult sized! She also got new biventricular leads, new pacemaker generator and Dr. Galatowicz was able to remove the right muscle bundling! We came back to see her and she was alert but very thirsty.  They only want to give a tiny sponge soaked in a bit of water so as she does not feel sick from all the anesthesia.  Slowly she progressed to ice chips and now to about an ounce at a time. She even got to bite a cracker.  I'm so surprised she is happy and talking some.  She gave me a few half smiles and told me she loved me. Felt so great to see and here that on this first day.  Her nurse commented she had never seen anybody smile so soon after surgery. :)  She has been calm and such a sweetie, asking for things politely. Her strength and courage are truly amazing.  Although we are extremely grateful and relieved we are cautiously optimistic things will continue to progress smoothly. We've had setbacks before and have met others here going through them.  We are hoping and praying we are spared this time and can slide out of here quickly with no bumps in the road. So please continue with prayers for a smooth night and recovery.  Tomorrow is big day with hopefully lots of progress in removing lines etc.  thanks again for all your prayers, love and support! It is almost one in the morning here so hoping to get a few minutes of sleep before morning rounds.

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