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! :)

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.

Surgery Day

Today is the big day. 

7:50 a.m.  She was taken to OR

9:40 a.m. Received first update, she is doing well and they were staring to cut through scar tissue.  

10:45 a.m. She's on bypass, sewing in first side of conduit.

Before surgery she was very calm. She had trouble falling asleep last night so she was already sleepy even without the sleepy meds.  Gabe and I have been only sleeping like 2-3 hours the last couple of weeks so we are already exhausted.   Surgery is expected to last 4-6 hours.  

Please continue with prayers for surgery and recovery.

Thank you!

Update on Luke and the whirl wind of May

I first want to say thank you so much for the many encouraging messages you sent me after my last post.  Seems like it touched many of you in different ways.

Well, today is Tuesday and one week from today my baby girl will be in the OR.  Seems unreal that the day is so near.  I just can't wait until we can all be home together again and have the surgery behind us.

May was a whirlwind of doctors appointments but also lots of good times attending graduation parties with friends and family. My hubby and I even squeezed in a date to see Phantom of the Opera, which we loved and my little man cub Luke turned 4 years old!  My sister made me laugh when she told me she kept telling everyone he was two lol!  Guess it makes two of us that still think he is a baby!


Some of you have asked how Luke has been doing and I am happy to report he is doing well.  No more scary episodes! He was a little pale and weak for a couple of days but he regained his color and energy quickly.  Once I saw him karate chopping around the house I began to feel better.  He had his appointment with the hepatologist last week   It worked out nice because Alexa also had a quick test to get done at the heart clinic (although they made her cry some big crocodile tears, broke my heart).

His appointment was first, it felt so strange walking into a new clinic, with new doctors and nurses and a whole new set of issues I knew nothing about.  Felt really vulnerable as opposed to the way I walk into the heart clinic where everything is familiar and I know the lingo.  After reviewing all his information the doctor said she did not see much reason for concern because although his liver is a bit large it still falls within the higher end of normal so still within normal range and that could have been from the angle the image was taken etc.  Through physical exam she said it felt fine to her and considering his original labs were good and he has no symptoms that would signal a problem, she does 'not want to go fishing for problems when she believes there is none'.  She does however, want us to keep on eye on it, make sure peds checks his liver routinely at visits and maybe do another scan some time in the future to monitor it. I felt relieved to hear this as it is one less thing to worry about right now.  I had been giving him and Alexa Milk Thistle at the recommendation of their naturopath and she said I could discontinue, but I may still give it periodically.  So very grateful we got out of there pretty unscathed.  I told her I had cried myself a river in worry and she said that ER docs just being cautious but as long as he is good then it's all good.  

Also have to say, proud of my Yazzy girl that one student of the month at her school! Way to go! Proud of you baby!  She is battling a cold right now, so I am anxious she is better before we leave for surgery and that she doesn't get the rest of us sick.  The saga continues.  I have much more to say but will leave it for another post.  

In summary, May was a whirlwind of crazy mixed thankfully, with plenty of good times.