Tuesday, November 13, 2012

Cali Day 2

Tonight's blog entry comes to you from the Short Stay Unit at the Packard Children's Hospital where a precious baby girl is finally drifting off to sleep after a long day.  Today was a very full and tiring day but everything went smoothly and our meetings for Max went better than yesterday so it was not a bad day, just a very long one.  Addie has been here for about 12 hours now, she had to get IV fluids for 3 hours before and 8 hours after her surgery and she was not so crazy about the whole staying in bed all day idea so she has been a bit frustrated but on the whole, her usual wonderful trooper self.  She is really such a good baby.  And also, Elmo is awesome and we are pretty thankful that this day coincided with her I just want to watch the same episode of Elmo's World over and over phase.  My mom has been with her all day and we are so thankful for her help so that I could go to the meetings with the boys.  My mom was the one to go get her in recovery and the only place she felt calm and comfortable was on her nana's lap so they ended up getting her back to her room by wheeling my mom in a wheelchair with Addie on her lap.  It was so cute.  We will hopefully get some preliminary results by Thursday and a full report end of this week or next.  We of course hope and pray Addie's kidney is working perfectly but will also be glad if something does show up that we caught it early and can make adjustments.

For Max, we met with Pulmonary today which is for his breathing, airway issues.  And it went better than expected.  I suppose after the disheartening neuro meeting, we had braced ourselves for the worst.  But she was pleased with how much better Max's airway is and very reassuring that once it has hardened and gotten better that it won't just get worse again.  She felt that while transplant for babies always poses some respiratory risks, she did not feel that Max was at a particularly heightened risk than say Addie would have been going into surgery.  We talked about the concerns down the road for pneumonia or airway obstructions due to his immotility but she did not seem to think either of those issues should weigh heavily on our current decisions.  We may have respiratory issues with Max in the future or we may not.  We won't really know so we can't really worry too much about that.  Which was actually really great to hear after worrying so much about the future yesterday.  A needed reminder that while we must think about the future, we will never know what it has in store and sometimes have to work with what we know now. 

Al then met with rheumatology and nephrology regarding his approval as a donor and had positive meetings.  Tomorrow Al has an abdominal MRI to check his kidney is okay and Max has an abdominal ultrasound to check his body is ready for it and we have no real consults or meetings.  Addie has a free day!  So after the exhausting and emotional past two days, I think tomorrow will be a welcomed slower day.

We have really appreciated the prayers and encouragement following last night's post.  It lifted our spirits and encouraged us to know how many people are praying for us as we make these decisions and to know how many people love Max and also want the absolute best for him.  We are so thankful for the support and love. 

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