Saturday, October 27, 2012

Our Upcoming California trip

This has definitely been the longest I have gone without posting so an update is definitely due, especially with everything that is about to be happening in the next two months! We've had a really great start to this school year with stable happy babies. I have not had to be away from school a single day in 9 weeks which is wonderful. And on November 8, Addie will celebrate her half kidneyversary! Nearly 6 months post transplant and she is thriving and aside from some frustrating medication juggling and concerns, she has been complication free and absolutely loving her life free of dialysis!  She will be reuniting with her California friends for a 6 month follow up and biopsy on November 13.  While we don't necessarily look forward to the biopsy as she will be going under for it, we are so excited to see our team and show off Addie walking and with little curls and being a toddler.   We are also glad that we will be able to get their advice and wisdom on her medications.

We are also excited to see our California friends as we will be introducing them to a very special person- Max!  Max and Al are coming with us in November for Max's transplant evaluation.  We will be there Sunday through Thursday and it is going to be a very busy and draining week for Max and us.  We have a lot of testing to do in terms of scans and blood work for Max and Al and he also have several consults or meetings with specialists.  The tests are part of the normal transplant work up- things that Addie and I went through to make sure there are no problems that we can foresee.  The specialists are part of the complicated process of trying to work out if transplant now is really the best thing for Max.  We are meeting with Pulmonology about his airway to ensure that a few days on a ventilator is not going to compromise his airway.  His airway is SOOO much better than it was and he has not turned blue in months.  The last time we had to bag him or force his airway open with our equipment was Feb!!! But better may not necessarily mean completely okay and so we need to make sure that a lengthy extubation and likely fluid retention and puffiness in the days following surgery will not injure his fragile airway.

The other specialist we will be seeing is neurology.  As most of you know, following an abnormal MRI of his brain, we spent an exhuasting and difficult few months early this year meeting with genetics and neurology here in Texas.  After lots of testing, Max was diagnosed with brain damage due to hypoxia, or oxygen deprivation, and it was decided that there did not seem to be an underlying genetic condition contributing to his neurological issues. Before transplant, however, we are going to meet with a new team in California and address these conclusions and have the opportunity for a second opinion.  We will address how his neurological issues could impact recovery from transplant and ensure there are not significant risk factors being posed.  We are so fortunate to be able to see some of the brighest and most amazing doctors at Stanford and to be able to get more input on Max. Having said that, we do go into these meetings and this week of testing with a fair degree of dread.  Discussing Max's disabilities and prognosis is emotional and stressful and knowing that the issues discussed in these meeting will be part of the decision regarding when/if we transplant Max definitely adds some extra pressure to the situation.  But in the end, we completely trust our team at Stanford and we know that they will reach the best conclusion for Max.

So... we face all of that Nov 12-15 in California.  My mom is coming with the four of us which will be so wonderful because it means Addie will not have to go to all the meetings and I can focus on helping the boys.  It will be a busy stressful week so please keep us in your prayers.  The wonderful thing is that we come back Thursday night and Friday my best friend Hannah arrives! All the way from Australia! With precious Heidi! We are so happy that there is a big huge bright light waiting for us at the end of the long week.  She and Heidi will be with us for 9 days over Thanksgiving week.  So I will have 9 days off with my family, including Adam, and Hannah and Heidi! I will get the chance to laugh and unwind before we head into an even more crazy December...

If Stanford does decide Max is ready for transplant, which we certainly hope and suspect he is... then we have a 'pencilled in' surgery date for him of December 11.  We pretty much live with Plan A, Plan B at the moment.  Plan A is that we transplant Max in December and Plan B is that we do not.  We are going forward as if Plan A is going to happen, even though we know there is a chance it will not.  But with Plan A, Al's mom and dad arrive from Australia in CA on Dec 9.  Al, Max and I will meet them there that same day.  Addie will stay in Texas with my parents and no doubt enjoy getting thoroughly spoiled.  She loves her days at their house so she will be well taken care of.   Al and Max would have surgery on the 11th and my in laws and I would take care of the boys.  Although there was some nervousness going into my surgery, I definitely think my anxiety and dread is higher knowing I'll be the caregiver rather than the donor.  I have a newfound appreciation for what my mom did for Addie and I as I prepare to take on caring for my boys.

On December 21, my parents will bring Addie out to California, just in time for their 2nd birthday! We would spend Christmas with my parents and brother and Al's parents and feel very blessed to have this unique opportunity to spend the holidays with both of our families. We would all stick around for a while and after the first week in January, Addie and I would return to Texas for me to go back to work while the boys continue to recover in CA until some time in February.

It will be a scary and intense couple of months but I know it'll be ok. After all, we've been through some pretty scary stuff. And we survived.  Last December we spent 3 weeks in the PICU with Addie losing dialysis access and having to go on Hemo.  It was unknown and scary and exhausting but we made it and she is in this completely better place. So I figured we handled 3 scary PICU weeks last December so this December, we can handle whatever Max needs us to.  Especially when it is all for the amazing goal of a dialysis free life for us and that is definitely going to make it all worthwhile.

And as for Plan B, well... we'll just deal with that if it comes to it.  It may mean just waiting some time, it may mean making some changes but whatever it means, we can always come to terms with that if we have to.  But since we are hoping and praying for Plan A, we're focusing our practical and emotional energy on preparing for that!

Stay tuned for more updates, especially in November when we have had Max's eval and we know for sure what is happening. We would really appreciate prayer and support over the coming weeks as we prepare for our week in California in November.

And to end with... some cute fall photos...


Bridget said...

So grateful for the update! What a blessing to continue to pray for you, Al, and your precious toddlers (I guess I can't call them babies anymore!) Can't wait to see you all!

Rosie D'souza said...

Hey Stephanie,

I was searching for the medicines and I come across to your blog and your blog title attract me to click and read the stuff and now I think I come across to a good writer how is sharing the good live experience of the life and your lil's are very cute... God bless

Thanks, waiting for your next post

Psalm68:5 said...

Hi! I am so glad I found your blog! I have a six month old baby with congenital nephrotic syndrome. We spent the whole begging on ivig and albumin treatments and finally got his kidneys out almost a ago. Everything looked great and we got to go home a week an a half ago. Four days after we got home he got very sick an now we are back. It has been very emotional and stressful and it is amazing to read your blog. I see our past, present, and future in everything you say. I would love to get to talk to you, is there a way to personally message you? Thank you for writing this blog, the good and the bad. I know how hard it mus be for you to write this, as I have a hard time just tellig close people in our life. But, it has been so wonderful to read and I thank you for being a light in this moment to me!

Stephanie said...

Hi! Thanks so much for your comments! I would absolutely love to talk to you. I started this blog when mine were 8 months old because I totally was not ready before that. I wouldn't even tell our family the name of their diagnosis for months because I was so devastated! So trust me, I've been there!

We have a lot of additional issues with our son but our little girl is such a tremendous success story. And her road has not been easy. She actually went into heart failure one week after her nephrectomies and then 5 months later lost PD access and spent 5 months on Hemo. So we had a very difficult time with her BUT she is nearly 6 months post transplant and just the most amazing little survivor. You would never know she'd ever been sick. Transplant is the biggest blessing and this huge light at the end of the tunnel so hang in there. It does get better!

My email is: or you can text me anytime on 936-689-7238. It's such a rare condition and it feels so isolating. I'd love to encourage you along the way and share some of our experiences!

Is your little guy on PD? What is he sick with now? where do you live?

I will be praying for him and you guys and hope to catch up with you more soon!