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. 

Wednesday, June 6, 2012


This morning Addie had one of her clinic visits and her nurse practioner came in and said 'Well aren't you thriving!' to which Addie of course flashed her a huge smile and went to her for a cuddle! I loved her word choice because it is definitely true! Addie is thriving indeed! 

In general after we hit about 10 days post surgery, Addie has just been unbelievably happy and full of energy and enthusiasm.  She had her hiccup last weekend with a urinary tract infection which was scary but a very typical complication.  She has a catheter that was surgically placed still in place and is on heavy immunosuppresant medications so infections like that are a fairly expected problem to encounter at some point.  She felt pretty awful for a day or two but perked up once the antibiotics hit! And has just been non stop smiles, waves, kisses, giggles and full blown belly laughs ever since.  She is loving having new visitors every week- since being here she was had not only me and my parents but my Aunt Debra, my brother Adam, my Uncle Mark and Aunt Kim, Miss Becky, and currently Al's mom and sister (her Marnie and Aunt Emily).  Next week my friend Shannon comes in and after that Adam returns with his fiance Jenny.  And then it's pretty much home time.  So we've been very blessed by all the visitors and they bring such enjoyment to Addie and have made this time a very happy time for Addie.  She hasn't just been sitting around in the apartment but being played with by her loved ones around the clock!

People say that after transplant the patient feels better than ever and gets this new energy and lease on life and we have certainly seen that with Addie!  A little girl who is 5 named Bella got a transplant one week before Addie at our hospital and it's amazing to hear her describe it- she says she feels so good and food tastes so good and she has so much energy and feels better than ever.  Addie can't verbalize it quite like that but her laughter tells us the same thing!  You can tell she suddenly feels like babies are supposed to feel and it fills her with joy! And of course those of us watching her even more so.  To see a baby who has never been healthy, who was born sick and has been reliant on intensive medical treatment every day for nearly 18 months, suddenly be well and feel great and have this normal life is just a miracle. 

One of our kidney Doctors told us months ago that transplant was just trading one set of problems for another which we found super encouraging and inspiring! Having now gone through life with bad kidneys, peritoneal dialysis, hemodialysis and transplant, we feel we are somewhat of experts of renal treatments and I will say that in the most literal sense, he is correct.  Transplant does bring NEW issues/problems such as being immuno compromised and having to ensure she takes in enough fluid to satisfy an adult kidney.   So there are new things to follow.  BUT, they are just nothing in comparison to the issues on dialysis and the demands of being on dialysis.  So I suppose we did trade problems but we traded a huge list of big scary frustrating and quality of life limiting problems for a small list of manageable problems so we just cannot express enough how amazing this transplant has been for Addie and how grateful we are that it has happened for her and been so successful!

We are here in Palo Alto for another appr 3 weeks just to remove her catheters and make sure her medications are all stable before they release her.  She goes to the doctor twice a week to get blood draws and see her team.  The team here is fabulous and have these specialized tranplant nurse practitoners and physicians assistants that have been instrumental in this process.  We really enjoy seeing them and appreciate the balance they are finding between cautiously following Addie and letting her have lots of doctor free play days!  She is also getting lots of physical therapy, occupational therapy and speech therapy.  Addie has some delays from being in the hospital so much and only just now feeling really great.  And she is already making huge strides since transplant but the goal for the next few months is to get her fully walking independently, get her eating and get her talking.  We're not rushing those things, we know they'll come and we are just so happy to see how much progress she is making! Therapies are always play oriented and Addie generally loves getting to go play and rarely realizes she is learning new skills in the process!

Meanwhile back home, Max is doing well.  It's easy to lose sight of his progress and milestones while Addie has been involved in this huge life altering miraculous change.  But we have learned over the past year and a bit to embrace all small miracles and steps of progress and Max has had plenty of those.  In January Max was on his machine nearly 21 hours a day and now he is down to 16.  Those extra 5 hours have allowed him to go out more and eat out and play more.  His super stroller arrived and he is loving being able to sit upright and see the world from this new perspective.  Al reports they strolled him around Wal- Mart and he loved it (probably judging all the crazies at Wal Mart from his new vantage point)!  He also has been doing really well with his breathing and it has been over 4 months since we had to give him CPR at home and this has been a huge relief for us! They told us his airway would harden around a year to 18 months and they were right.  He no longer has to sleep with an oxygen monitor and Al feels safe to sleep downstairs and not next to his crib. We actually felt comfortable to leave him with his grandpa while we went to dinner when I was home.  So while not a sudden huge change like a transplant, this gradual hardening of his airway and lack of breathing episodes has made a huge difference in his life and of course in ours. 

So great news all around!  We are so appreciative of all the prayers and support the past month, of all the visitors and text messages and phone calls and facebook cheering on.  It's been wonderful to be able share these highs and blessings with people who have stood by us and prayed and loved us during the lows and scary times.  No doubt we'll have plenty more of both but for right now we delight in the good and enjoy this long awaited new life for Addie!

(yes, she is being trained to take over the blog soon!)