Sunday, June 24, 2012

Nearing the end of this transplant trip and planning the next one...

It's a beautiful sunny day in California.  Adam and Jenny are here visiting and we have just returned from a farmer's market.  Yesterday we went into the city and took Addie's picture at the Golden Gate Bridge and had lunch in Chinatown.  Basically we in vacation mode at the moment!  Enjoying time with visitors and the weather and how amazing this state is!

Of course the fact that we are feeling so good and up to sightseeing and playing means it is about time for us to go back to Texas! Two weeks ago we removed her dialysis catheter and urinary catheter and now we're just here following some electrolytes and immunosuppresant levels and waiting on a renal ultrasound tomorrow to confirm she is all good and ready to head back! We don't really have a date for return yet because we need to make sure everything goes smoothly tomorrow and then hopefully we'll start looking at a date.  I'm just superstitious enough that I'll probably post our return date once we are boarded the plane rather than in advance.  But, if all goes well I expect we will be home in Texas in about a week or at most two. 

We can't wait to get home to the boys! Al and Max are both very happy enjoying having both of Al's parents and his sister Emily out visiting them.  Max is getting showered with love and attention and cuddles so I know he is happy but I can't wait to get home and hold him and spend time with him and his dad! Al hasn't seen Addie in 2 months (other than their very sweet Skype chats when Addie blows kisses and waves at him with the biggest smile on her face the whole time!) so he can't wait to have her back.  Thankfully I have off until late August so we will have about 6 weeks together just to spend time at home with the babies and enjoy being all together.  This will be such a blessing since last summer the babies were in the NICU until the day before I started back and I think one of them has been in the hospital during every school break all year.  So this stretch of time together seems almost too good to be true for us!

The only sad thing about heading back is how much we will miss our transplant team here at Stanford.  We have loved the hospital here and felt very confident in our team.  They have been amazingly nice to us and adored Addie and we actually really look forward to clinic visits.  Everything has gone so smoothly from really the first time I called to arrange this through to now. I have written about this before but I kind of love hospitals and nurses and doctors which may sound really weird.  But it's a safe place and people were I feel normal and understood.  My nurse friends all the way back from NICU to our dialysis nurse who is one of my good friends to now our new transplant nurses... I have been very blessed by these friendships and the support and understanding that comes from these relationships.  So, we'll miss our new friends but of course, at the same time be very excited to get home to our Dr S and Julie and all our friends back home!

Because of how amazing this experience has been, we have exciting news... we have decided we will be bringing Max here to Stanford next summer to be transplanted!  Well that is our plan anyway... we will start doing more testing for Al and Max soon but for now our plan is that by this time next year we will have both babies off of dialysis and our whole family will be here in San Fran enjoying the sights recovering together!  There are a lot of factors that have gone into this decision but essentially we feel that Stanford is the best possible place to transplant a baby and that Addie has gotten the very best experience and so of course, we want the very same for Max as well.  We could have waited longer and eventually do his transplant in Texas but we have decided that we aren't wanting Max to have to wait that long.  Arguably we could probably transplant Max sooner than next year but we want to work around my school holidays so I can be there for the whole thing.  And Max is already so much stronger with his airway and another year will probably be the perfect timing when he is strong and ready.   We are also hoping to have him see Neurology here and maybe get some more insights and ideas on Max's brain and what the future might hold for him and how we can help him best.

It's been a pretty rough 6 months for us with Max's neurological diagnosis and some very difficult meetings about the future for him.  We have had some really sad times and some fearful moments and there were days we really didn't think this transplant was ever going to happen for Max, much less any time in the next couple of years.  So the fact that our team at Stanford feels confident and ready and enthusiastic to transplant our little guy is so exciting for us.  We know that a transplant is not going to fix all of Max's issues.  It is certainly not a cure all.  BUT, it is a plan and a direction and it will make a huge difference in his quality of life.  It will get him off his machine and open doors for more therapies and schooling opportunities in the future.  And it will make a huge difference for our family, allowing us to travel, go to Australia and see our family and friends and just having the freedom of life without dialysis.  So we look to this new plan with great excitement and will keep you updated on all our progress as we start testing and planning.  We would appreciate your prayers that God would orchestrate as wonderful of a transplant experience for Max as he did for Addie!

So that's about all the news for us! We say goodbye for now to California knowing we'll be back sooner rather than later and we head back to Texas and look forward to a wonderful summer of time with family and friends.  We are truly richly blessed. 

1 comment:

Beck said...

This is the best need all round steph! I am so happy for you all and praise God that Max will have his opportunity in thr new year. Thinking of you and praying and celebrating your return home. What a wonderful moment it will be to have you all together again! Xo