Happily Ever After

In my book I have been writing in my head, the final chapter, the conclusion, the happily ever after has always been planned to be Max's transplant. Definitely far from the last chapter in the story of Max and Addie's lives but for the specific story of their kidney condition, it seems as neat of a conclusion as you can get. I was all excited about our happily ever after 3 days after surgery when I was talking to the media director from the hospital and daydreaming about what I would wear when I appeared on Ellen. Max was going to be home for their birthday and I had grand plans for this perfect final scene of the twins reunion at the 2nd birthday party. We were looking into having the news come and cover it. Happily ever after seemed just around the corner. And then Max got sick. Not like normal kid sick. Not like oh some throwing up or a sore throat sick. Bad, bad sick. Like would not have survived if a machine had not taken over and breathed for him for a week sick. Like got so upset by the life saving machine that he would clamp on it and nearly not let the machine continue saving his life sick. Like his brand new kidney stopped peeing and his tummy stopped digesting sick. Like had to be on so many sedative and narcotics that he developed dependency and went through the most awful withdrawal I have ever imagined sick. Bad, bad sick. And happily ever after started to seem very very far away. I stopped thinking about Ellen and my book tour and just started praying day and night that Max would survive, that his new kidney would survive and that Al and I would stay strong enough to hang in there while dealing with some really heartbreaking and terrifying stuff. And God heard all our prayers and Max did survive, again and again, he survived scary life threatening situations. And his kidney did great and is working amazingly well again. And even though leaving Max and coming back to Texas to work was the hardest thing I have ever had to do, Al and I both made it through to this day without completely losing our sanity or sense of humor. And Friday night, happily ever after arrived. Max got to go 'home'  (to the apartment in California) from the hospital after 46 nights there. He is going home off dialysis, off oxygen and smiling and happy. I will admit that the true closure and deep happiness of that milestone will be a bit delayed for me because I am not there and I think it won't be until I go to California in a couple of weeks and see for myself how good Max looks that I will really truly embrace the happy ending. But my delayed gratification aside, we are thrilled to have made it to this point and so happy that this story is getting its happily ever after.

Most of you who read this already know the background but we found out just over 2 years ago that Max and Addie would both need kidney transplants. We also found out it would be a while before they could have them. And so this happily ever after of them both being transplanted has been in our plans and on our hearts for two years. And it felt so far away so many days. When Addie first went onto dialysis and went almost immediately into heart failure and stopped breathing, we did not know if she would get to transplant because her heart was suffering so much. And then miraculously she got better, quite quickly and very completely. Then a few months later when she lost her peritoneal dialysis ability and had to go on Hemo, we wondered if her body could handle that and if the months of Hemo would compromise her ability to transplant. But last May, Addie got my kidney and her life turned around in an instant. The sick complicated baby girl who created medical complications that the doctors did not even know existed is a happy healthy 2 year old. Meanwhile as we prepared for Addie's transplant, we faced the very real possibility that Max would never be transplanted due to what seemed to be a progressive neurological condition. We feared he would not survive long enough to transplant or that if he did, his case would just be too complicated. But Addie was an amazing sister and led him to the perfect team who embraced his case with open arms. And suddenly our dream, our goal of them both being transplanted was back to being our reality. God moved mountains for us to arrange a second long California trip in a year and Max got his dad's kidney. And within about 8 days of the transplant, he was so sick he was on a ventilator and the head kidney doctor came to tell me that they were looking at starting Max back on dialysis the next morning because his kidney had stopped working. It was a terrifying night and I worried and cried and doubted Max would make it through this without at least losing the kidney. But the next morning came and he started peeing again. And the next month pretty much went like that- 2 steps forward, one back. He got within an hour of being released a couple of weeks ago and then spiked a high fever and the next day they found a staph infection and he was very sick again and ended up spending another week in the hospital. But through it all, he stayed strong and kept smiling and he is now very well and he did finally get his happily ever after.

We are so thankful to be at this point. For the journey to transplant to be complete. We thank God for protecting Max and Addie's lives time after time. For leading us to doctors who knew how to take care of them. And I am thankful that at every crisis and every turn, God took care of Al and I. I never walked through a terrible day alone. He always provided someone to hold my hand and provide the support and love I needed. Even as we faced long difficult days in California with my Addie and my parents so far away, he provided very special friends for me in California who took amazing care of me. Our parents have given everything to help us and to get Max and Addie transplanted, our extended families have given us money, love, and neverending support. We walk away from this 2 year journey victorious but with a lot of battlescars, all of us. We carry physical scars and we carry emotional scars, but we also walk away stronger and filled with great gratitude to God for the lives of our precious children, for every wet diaper we change and for the people in our lives who have shown us unconditional selfless love and carried us through to this point.  We are so thankful for this happily ever after (but stay tuned as this is far from the end of this blog or the end of the miracles God has in store for Max and Addie!)

Some photos of Max's last day in the hospital...

With Addie and I back in Texas, Max had the Australia crew with him...

One of my favorite Max pictures ever, courtesy and Aunty Em

He certainly does not suffer from lack of love does he?!

2012, The Year of the Transplants

There is so much to say and I have like 5 blog drafts started about everything from their birthday to Christmas to explaining more about what is going on with Max.  It has been hard to finish anything because things seem to change a lot with Max so it has been a pretty stressful time. And I KNOW there is no such thing as 'jinxing' but I do feel a bit like every time I post on Facebook and say Max is better, he has a set back so I have been a bit hesitant to write anything on my blog.  But here we are on the first day of 2013 and I thought I should quickly take a moment to be thankful for the miracles we have seen in 2012 and that although we did not end the year quite like we would have imagined or wanted, we did end the year with two beautiful two years who are off dialysis and peeing and we will always look back on 2012, the year of the transplants, as a wonderful year for our family.

At the start of 2012, Addison had just finished a 3 week hospital stay that resulted in her having to come off peritoneal dialysis and go on hemodialysis.  She had lost a lot of weight and was recovering but definitely facing some very real risks and obstacles.  We knew she had hearing loss and needed to work on her eye but in the face of her acute renal issues, all of that seemed some far in the background.  She had turned one and just started army crawling.  If you saw her today, you would never be able to guess any of that.  She is the happiest most adorable two year old who is healthy and thriving.  She is so amazing, she wears her hearing aids all the time and if one buzzes or comes out of place, instead of ripping it off like she did a few months ago, she actually puts her hand up and fixes it herself.  She wears her patch without resistance and her eye is so much better.  She will have a day surgery to fix it more permanently in a couple of months and that issue will be behind her.  She walks everywhere, tries to run and jump and has this adventerous little spirit.  She is starting to discover words.  Medically she ended 2012 with a great biopsy report that her kidney is working brilliantly and all her labs have been excellent for months now.  She is truly healthy.  And happy and so loved. 2012 was a miraculous amazing year for Addie.  I will never stop being grateful for the year I got to give Addie my kidney and see her life turn around before my eyes. 

As I write this post, I am sitting in the PICU next to Max who is today 3 weeks post transplant. I had assumed he would have long been home by now (for reference, Addie was home at 8 days post and out of the PICU at 3 day post... so while we knew he could have a harder time, we were never expecting this).  At the end of 2011, although we knew Max had delays, we had not yet done an MRI and so we really had no idea what was in store for us there.  So 2012 was a very emotional year for us both as we spent the year on the quest to finally settle with a CP diagnosis and then as we explored whether we would transplant Max and then finally did, only to have the unexpected hurdle of an RSV infection.  But while 2012 was difficult for Max, I do not want to ignore the many miracles that happened for him this year as well.  In February of this year, Al and I sat through an awful meeting with a team of doctors and were told that they suspected Max has a neurologically progressive condition that would result in him losing all his abilities and significantly shorten his time with us.  We were told the chances of transplanting him ever were very small.  And yet, here we are on the first day of 2013 and Max is alive, he is very much aware and interactive.  We know he has cerebral palsy and will need a wheelchair but we also know there is no limit on what he will be able to think and how he will be able to interact with others.  And most significantly, he has his Daddy's kidney inside of him and he is peeing and free of dialysis.  He is still fighting RSV and not well yet but I do believe the worst is past us and that from a very scary and terrifying couple of weeks, he survived, his brand new kidney survived and is working well and he is slowly, but I do believe surely, going to get well and come home better than ever.  So 2012 has not been an easy year for Max, or for us as his parents, but it has been a year of great miracles nonetheless. 

Please keep praying for all of us.  At some point, I will write more about what all has happened these past three weeks. I haven't been ready to really talk or write about it yet but I will.  It has been very up and down and Max is still on a biPAP machine to help him breathe so he really needs prayers for complete healing.  Al is doing really well.  You would never think he had surgery 3 weeks ago, he is just doing awesome.   Addie is still here with us and bringing so much joy to us all.  She is spending the mornings with Al and Al's parents and loving her time with her grandparents and then I leave the hospital in the afternoons to spend time with her and she makes me so happy.  I could really use some extra prayers this weekend as I have to go back to Houston with Addie on Saturday.  I have to be back at work on Monday.  I never imagined leaving my baby in a PICU in another state.  But for a lot of reasons, there doesn't seem to be another option so please pray for peace for me, and stability for Max and that my time away from Max will seem short and and not as painful as I fear.  I will be coming back for a weekend to see the boys in a few weeks and we hope they will be home in late February.  Al's family will be with him the whole time. 

Thank you all for the way your love, support, prayers, generosity and interest sustained us through 2012, especially admist our two big transplants.  We feel very blessed that we did not walk alone through the highs or the lows of last year and look forward to what we hope to be a less dramatic and eventful and more healthy, happy and stable 2013.

Some photos from the last month...

Adorable Birthday girl!

With my baby girl on her birthday

Opening and Playing with presents!

Her Abby Cadabby balloon was bigger than her!

Cuddles with mommy

Max's first post ventilator smile, appropriately given to his Daddy!

Thankfully he saved one for Mommy too!

Last week during one of his really good days, love his precious happy face!

Today (01/01/13) post set back on his biPAP, rosy from another blood transfusion

Brushing her hair!

With Adam and Jenny, loved spending time with family this Christmas

Slides are so much fun!

Please pray for Max.

I have been updating Facebook because it is a lot easier but I thought I should quickly update my blog since some people read it and not Facebook.  I don't have a lot of energy or eloquence tonight so I am just going to explain the situation as best I can.

Max has been having a lot of 'secretions' (snot, mucus etc) really since come off the ventilator initially but it did not seem to be compromising his breathing.  We thought it could just be related to having had a breathing tube down his throat or from increased fluid needed to maintain his new kidney.  He seemed ready to come off his ventilator and was breathing all on his own with just a canula to give him some extra oxygen this weekend.   On Sunday we started noticing that he seemed to be working hard to breathe.  He kept his oxygen up but it seemed like hard work for him.  We weren't sure really what was wrong and hoped he just needed to pee off more fluid.

At the hospital they can very quickly check Max's blood and see how much oxygen is in it, how much carbon dioxide is in it and what the pH is and they have set parameters for what they want those numbers to be.  Through the weekend everything looked fine.  But Monday morning, the amount of carbon dioxide in Max's blood was creeping up.  And it continued to increase and reached too high of levels, regardless of moving him to CPAP, a machine that gives him more oxygen and support.  He was just not able to breathe effectively enough to keep his blood at the levels it should be.  So they went ahead and put him on a ventilator.

Initially after surgery he was on a ventilator to heal and as a precaution.  Now he is on a ventilator because he couldn't breathe on his own.  Which is an entirely different and much more serious situation. 

We weren't sure why this change had happened.  Until we got the positive RSV test back, which really makes it good news because we know what is wrong now.  RSV is a respiratory virus with cold like symptoms like runny nose, congestion and lots of mucus.  You have probably had RSV and as an adult you would just have a yucky cold and go through a lot of Kleenex.  But on smaller children, it can cause so much inflammation and secretion that it blocks their airways and prevents them from breathing effectively.  It is most dangerous for children under 1... or kids whose immune systems are compromised, like Max. 

So Max will likely stay on the ventilator for a few days while we wait for the infection to clear up, which will take longer than normal due to his weakened immune system.  If he has a machine breathing for him, we do not have to worry about his airway getting blocked and him stopping breathing.  The two concerns while he is on the ventilator are that we manage his sedation and prevent him from getting upset and actually clamping down and blocking his vent as he did earlier today.  And that the secretions in his upper airway do not end up in his lungs causing him to get pneumonia.  So we pray that he doesn't have any further complications from the RSV and that it will just be a matter of time and patience waiting for his body to heal.  We are also really keeping a close eye on his kidney, which has done better today, and praying that it does not get damaged while he is sick and his blood pressures are lower than ideal.

Addie is still able to come out as thankfully she recieved an RSV vaccine.  She will not however be able to see Max so we will be doing separate birthday parties.  I am just so relieved I still will get to see her.  We could really use a dose of Addie sunshine.

Thank you all for praying for Max and for the continued love and support.  The texts and emails and Facebook comments have really encouraged me today.  If you shared this link asking for prayer for Max for his surgery, please feel free to share again as he needs prayer very much right now. I will mainly be updating Facebook but will try to keep this blog updated as I have new news also.

Hope in a place and time of tragedy

We knew going into this that things have to be worse before they can be better and that Max would look sicker and sadder before he would look healed.  We knew there would be long days and the moments when you think 'what were we thinking?!'  Still, you know that and it still is hard living it.  We took Max to the OR smiling on Monday and brought him back on a breathing tube sedated and spend the next 72 hours sitting by his side when he LOOKED so sick.  He wasn't, he was healing.  But lying there not interacting with the ventilator humming it would be so easy to forget that this is a step of hope, not a step back.  My spirits would get heavy as I missed Addie terribly and I missed seeing Max's smile and kept having a hard time remembering THIS IS GOOD when it did not look good. 

I never found the NICU to be depressing the way I find the PICU to be depressing.  In the NICU the babies are tiny and early and the parents are scared but most will get better, they just need a medical womb and some attention to get them there.  There are some very sad cases but a lot of new parents kangaroo caring their little ones, a lot of smiles through the tears.  I felt like it was a hopeful place, babies getting better and going home with normal full lives ahead.  Emotional, yes but tragic, only rarely.  But the PICU is different.  When Addie was admitted to the PICU last December, there was a night when we couldn't leave the room for hours because 4 children who had been shot by their father were being rushed in.  There are drownings, there are abuse cases.  Kids fighting against RSV for their lives.  Babies, toddlers, teenagers on ventilators who just hours before would have been running around.  When I am in the PICU, I get sad for the children and the families surrounding us.  I am always aware of how much tragedy there is.

And then yesterday, of course, we were all made ever more aware of how much senseless tragedy there is in the world with the shooting in CT.  As a mom and as a teacher, I was shocked and devastated for those families and the school.  I wished I could have seen Addie to hold her extra close.  I couldn't even think too long about how awful it must be for them because I would not have been able to handle thinking through that grief while sitting next to Max still with a breathing tube, getting better but still facing his fair share of hurdles.  I prayed for everyone involved for a peace that I certainly cannot understand and for love and support for them during this time.

I also looked at my circumstances differently.  I looked at sweet Max on his ventilator and remembered that he is not here in the PICU because of a tragedy, he is here because of a gift his dad gave him.  He is not here because something suddenly threatened his life but rather because of a planned pathway to hope.  His breathing tube was allowing him to heal and get ready for a better life than ever before.  I realized that in this place where there is so much tragedy and on this day where there was so much tragedy, that sweet Max is sweet wonderful hope.  And we are blessed beyond words to be here, hard of a process of this is, on the pathway to a better life for Max.

I wouldn't be normal if I didn't admit that there are days when everything we have been through feels like tragedy to me.  When it feels awful and unfair.  The 8 months in the NICU, the 20+ surgeries, the close calls with Max styopping breathing at home, the brain injury and CP, the hearing loss.  I can lose my persepctive on days and feel that our family has experienced tragedy.  And then sometimes I just need to remember what tragedy really can look like and realize that my babies are alive and smiling.  They have overcome.  Ours is not a story of tragedy but of healing and hope. 

I spoke to the media director here one day this week who is arranging photo shoots and possibly the news to come cover Max and Addie's birthday party which we are quite excited about.  He kept saying 'this is a wonderful story of hope for Christmas time' and it was such a great reminder to me this week.  This year all four members of our family have had major surgery.  We got Max's CP diagnosis.  And we are leading up to Christmas with Max still having a ways to go to get out of the hospital and with my not having seen my Addie in a week.  It doesn't FEEL always like the heartwarming Christmas of my dreams.  But then I sometimes just have to look at it from another perspective and see what tremendous miracles have happened this year and what a wonderful place we are ending this year.  Sometimes I have to ignore the voice that reminds me all of all the things we still have to battle and deal with and just celebrate myself this hopeful beautiful story of two precious babes who beat the odds.  To embrace the story of hope in a time when there is a lot of tragedy. 

 

I pray today for all the families grieving, in CT and in hospitals around the county, and I thank God once again for saving my babies lives.

Post Op Day 1- Healing after Successful Surgeries!

Yesterday was a long but very successful day.  Al went to surgery nice and early.  He was in the operating room around 7am.  I spent a few more hours with Max and then took him down right around 10.  And then we waited.  And waited.  And waited.   We finally heard around 130pm that Al was done.  He had a tricky lumbar vein that made getting kidney out a longer than anticipated processs.  Then around 230, we heard that Max had the kidney in him and was peeing already! Which is of course the news we had been hoping for all day so we were elated.  We then had to wait another 3 hours to see either of them.  Finally about 530pm we saw Al who was awake and talking and in great spirits.  And around 6pm, we saw Max who was sedated, still on his breathing tube but looking peaceful and had good coloring. 

I ended up not staying the night because I got really sick during yesterday.  I had a cold when we left Houston and then got really messed up on the airplane with my ears blocking up really badly.  Then with all the extra stress it somehow developed into a sinus infection and by Monday night I was miserable.  I stayed at the hospital but hardly slept.  As soon as Max's doctors and nurses walked in, they were like oh you look bad.  Of course i was in the best place in some respects as Lynn, our PA, immediately got me on an antibiotic and checked on me throughout the day, giving my Tylenol when I then started running a fever.  Once we saw that both boys were stable, I was convinced I should leave the hospital for the night and get some rest.  I stayed with our transplant coordinator who took care of me and I got 10 hours sleep and at least feel a little better today, although still not well. Al's parents stayed with the boys to make sure they were ok last night.

Al is already wanting to get discharged and seems determined to be the best donor patient ever! He is certainly making me look pitiful- I am super glad I went first!! He is texting me funny videos and making jokes and enjoying eating lots of popsicles.  He does feel pain where his incision is and finds walking uncomfortable, as is expected.  But being an amazing patient.  Max is much the same, quite puffy from all the fluids he has been recieving and pretty relaxed with some heavy duty tranquilizers on board.  He is running occasional fevers which is pretty standard for Max but that is being followed carefully.  He will stay on the ventilator all day and hopefully just rest and pee.

Thank you so much for all the prayers for us.  It was such a long day but we are thrilled to have it past us.  Please continue to pray for Max that he will get stronger and better each day and closer to looking and feeling like himself.  I don't think I will include a picture of him yet as he is a bit sad with his breathing tube and puffiness but as soon as he is looking more like himself I will include pics of the brave boys.   

Max's last night on dialysis! Please share, pray and send us your love for tomorrow!

By my calculations, tonight will be Max's 530th night to spend on dialysis.  Since June 27, 2011 he has spent 15-22 hours a night hooked up to dialysis.  He has struggled on it with discomfort, reflux, vomitting and feeling chronically full.  He has been such a trooper and waited so patiently and tomorrow his day is finally here! Tomorrow Max gets his dad's kidney and he gets to pee and be freed from dialysis! When we did this in May with Addie, we were not sure just how much better life with a kidney would be.  Now Addie has shown us just what an amazing difference it makes.  And so we are so pleased that Max's day is here.  We do ask for lots and lots of prayers to surround Max, and Al too tomorrow.  And of course in the days that follow. 

We are blessed beyond words that we were both matches for our babies and tomorrow we become a one kidney family- a process we have been working towards for a very long time.  It was one of the greatest privileges of my life to give Addie my kidney and I know Al feels the same about doing this for Max.  Al will go back for surgery around 7am tomorrow (which is 9am Houston time and 2am Melbourne time).  He is having his surgery done laproscopically, instead of open like mine was. Max being much bigger than Addie was has made this less invasive technique possible and although he will have a sizeable incision and plenty of pain, his recovery should a bit easier, especially for walking etcetera.  The surgery is also fairly long and the surgeon predicts he will be in surgery for around 5 hours.  Max will go back to get started before Al is done, probably around 10am (noon in Houston, 5am in Melbourne).  And he will also have a several hour surgery.  They will both come back groggy and riding some pain meds tomorrow.  Max will remain on a ventilator for several days. 

We would appreciate prayers for all the details of tomorrow, for safe anaesthesia and surgery experiences for both of them.  That Max would begin making urine on the operating table, as his sister did, and for protection over his lungs and heart in the days following surgery.  We would appreciate prayer for minimal pain for both of them and effective management of pain meds for them.  And while you are praying, please say one for those of us waiting... for me and Al's parents here in California and also for Addie and my parents in Houston.  It is a nerve-wrecking day for all of us and we will all be feeling better 24 hours from now to have this past us.

Please feel free to share the link to this blog or just their names on Facebook or at work or with your friends.  If you have not send a message for Max, it is definitely not too late and messages tomorrow would certainly encourage us or just knowing that people are praying for them and thinking about us. It is so different being on the caretaker side and not the donor side this time and I will definitely be anxious tomorrow and will appreciate messages and support throughout the day.

We saw what a wonderful miracle transplant was for Addie and we love seeing what life it has breathed into her.  So tonight we pray for Max's miracle and that tomorrow will be the start of so many new adventures for our little man.   Thank you to everyone who has and continues to pray for my precious babies. 

Pictures of my heroes:

All under one roof...

Addie and Max are fast asleep.  Al is finishing his packing.  I am all packed and distracting myself by watching Season 2 of Grey's Anatomy on DVD and trying to enjoy this last night for a while of my family all being together here in our home.  Tomorrow morning my parents pick up Addie and then Al and I load the plane with Max and meet his family in San Fran.  Tomorrow it all begins and I have spent today soaking up this beautiful calm before the storm.  Addie was particularly cheerful and delightful, laughing and smiling and making my heart so happy and at the same time so sad to be leaving her.  Max has been rosy pink and full of smiles, completely unaware of what is coming.  It has been a lovely day and it's hard to believe how long it will be before we have another one like it. Actually we will never have one exactly like this, we will have ones much better because when the boys are back and we are all reunited it will be without dialysis and with two healthy babies.

Sometimes in life you have to do something really hard to get to something totally wonderful. People ask us if we are so excited for Max's transplant.  We are so incredibly excited for what Max's transplant will do for him.  We are so excited for life after he has healed and what a wonderful change it will be for our family.  So, yes we are super excited for the end point.  But I can also tell you we are not excited for these next two weeks.  I am not excited for 2 weeks away from Addie.  She is my sunshine and my joy.  My heart is sad to be without her for 12 days.  Do not get me wrong, she is in great hands.  She will have a wonderful time.  Leaving her here with my parents is the selfless choice because it is completely what is best for her.  But for me, it's going to really hard. I am excited for what this surgery will bring about but not excited for surgery itself, for seeing both of my boys in pain, for long days and nights at the hospital, for the inevitable fears and concern.  It's a hard process for a wonderful purpose.  I pray that the next two weeks go quickly and that before I know it we will be through the hard scary tiring part and entering the exciting part of seeing Max better than ever. 

I know lots of people are praying for us.  Please pray for our travelling tomorrow and that Max and Al will both stay healthy the next two days leading up to surgery.  Of course we will be asking for lots of prayers on Tuesday but I will post again on Monday night with specifics about Tuesday.  Please also pray for Addie.  We are praying for protection of her health during her time away from me.  And please pray for stamina for my mom (and dad) and good restful sleep at nights as she has full time care of Addie these couple of weeks.  And for Al and I saying goodbye to Addie and getting nervous for Max these next couple of days.  We all need an extra dose of strength and resilience.

I have lots of wonderful photos of messages for Max that I am hoping to spend some time next week putting up on Facebook for everyone to enjoy.  I have been soaking up my Addie time and working hard to get school stuff together so I haven't put aside time to do that yet but I will have plenty of time next week.  If you haven't sent one, please still do.  Or post it on Tuesday on Facebook and tag me.  A lot of people did that last time and it really lifted our spirits on the day to log on and see all these pictures. I will post again Monday night a short specific prayer request/update on times etc for people to share.  I know last time lots of people shared our story the night before and I know all those extra prayers showered upon Addie and I were answered.  So stay tuned for a pre surgery update. 

And for now, back to my fake medical drama to distract me from all the real medical drama coming up soon.  And back to enjoying the peace of having all my little loves together with me under one roof.