Friday, December 20, 2013

The Christmas gifts I never knew I wanted

Three years ago my twins arrived completely unexpectedly nine weeks before their due date just three days before Christmas. I was under general anesthesia when they were born by C section and they were whisked away to the NICU to get breathing support.

When I posted that they were born the next morning, I got a lot of messages and comments about what a wonderful Christmas present I had received. The comment struck me as strange. Max and Addie were extremely wanted and so definitely they were a desired present. Having said that, all I wanted for Christmas 3 years ago was for my babies to stay put and for them to be born healthy. It's what all pregnant mommas wish for babies- hence the saying it doesn't matter if it is a boy or a girl, 'just as long as they are healthy'. We want our babies to stay in us growing and then come out all pink and perfect.

So when I gave birth to these little preemies, in a way completely not how I would have planned... well, it really did not feel like a gift. The children, yes OF COURSE. But their arrival just before Christmas, definitely not.

I can tell you now that although it was not on my Christmas list and not what I thought I wanted three years ago, my little Christmas babies are the greatest gift I have received. And their early arrival brought many blessings as well, allowing them to be in a NICU when their kidney disorder was discovered. I can look at it now and say Thank you God for my Christmas presents, my precious gifts. Thank you for when and how they came. You knew better than me what they and I needed.

Three years ago, God also blessed me with another gift I never asked for. He chose me to be a special needs mom, a mom to kids with chronic health issues and developmental delays. Three years ago my life, my role and my purpose radically changed and I am a very different- and BETTER and STRONGER- person for it. The gift of parenting complex children, children with perfect souls in imperfect bodies- has truly been a blessing and a gift to me. But I'll tell you, it was not a gift I asked for. It was not a gift I thought I wanted. And although I honestly thank God for the ways it has changed me and the opportunity, it's also not a gift I would wish on someone else. It's the most important and rewarding role I will ever have in my life, and it is a role I accepted very reluctantly.

There is this saying of sorts that God chooses special parents for special children. It's a nice wonderful idea that special needs children would be born only into the most wonderful and worthy of families. It is truly a lovely concept- if only it were true!! Don't get me wrong- I know some truly phenomenal special needs families. But sadly I also have spent far too much time in hospitals not to know that there are special wonderful fragile children born into families that cannot handle their needs. That abandon them, completely or emotionally. It's horribly sad but it a reality that special needs kids are born into all types of families. I don't think their families are distinctively special before, although I do certainly believe each of those families now has the chance to become an incredibly unique, blessed, special wonderful family because of that addition.

There are some heroic inspiring people out there who will foster or adopt a special needs child because they feel called and led to provide a better life for that/those children. I have the privilege of knowing such an amazing family. My friend Lauren adopted her son who has congenital nephrotic syndrome (Max and Addie's kidney condition), knowing he was sick, desiring to provide him a wonderful chance at a full blessed life. She has gone on to foster another boy on dialysis so that he could live outside the hospital and his life has completely turned around. Lauren is my hero. The world would truly be a better place if there were more people like Lauren. I think she is the most exceptional person I have ever met.

And I know that my calling has been completely different. I did not choose this, it was not out of my noblest intentions that I wanted to take care of these fragile little people. I was just a normal pregnant lady praying for healthy kids. Dreaming of a normal typical future for them. Confident they would be brilliant and advanced and just debating what sports they would play and which medical profession they would enter. I'm not trying to be self deprecating when I say I don't believe I was inherently special. I just mean that I was like every other person I knew getting ready to have kids.

And as I started to find out, in stages, that in fact I was going to be a totally different type of mom, with a different and special calling, I'll admit I did not exactly leap for joy!! I prayed at every step that their medical diagnoses would be wrong, for healing. (And I still pray for healing. Not because I don't embrace my role but because my children do suffer and I will never stop praying for healing for them). The day I found out about their hearing loss I wept for the loss of the 'normal' future I had dreamed up for them. Finding out about Max's brain sent us through all the phases of grief from denial to anger to great sadness. To be where we are now, truly in a state of acceptance, and even more appreciation, has been a long and challenging journey.

I used to go to BSF, a Bible Study that would offer 'principles' which were short applicable truths. One I think about all the time is "God doesn't call the equipped, he equips the called." I don't think I was chosen for Max and Addie because I was able to be an awesome parent for them, because I was special and strong and uniquely qualified for this journey. But I do believe that since blessing with me with Max and Addie, God has been molding me and empowering me to become that special mother. I have become far stronger than I ever thought I could be. I have learned more about medicine than I ever wanted to know and been able to remember things and advocate for my kids. I may have been just a normal pregnant girl but for the last three years I have been on an amazing journey to become a special mom for my special kids.

I do not miss who I used to be, and I do not long to not be a special needs mom. Granted, I may be less carefree and funny and I know I'm more neurotic and well crazy... but at the same time, I am stronger, I am more compassionate, I am more grateful and I am more confident in my purpose in life. I am a better person for this journey God has placed me on.

So this Christmas as I wrap presents for my little 3 year old unexpected Christmas miracles, I thank God that He gives us what he need and not just what we think we want. That he equips us and gives us strength for the adventures he chooses for us and that he works in our hearts when at first we aren't sure we like our Christmas present.

Monday, December 9, 2013

Max's Kidneyversary

One year ago today I spent the day pacing the halls at Stanford Hospital in California. My husband and my son were both in surgery for most of the day. I had gotten very little sleep, and had developed a bad sinus infection and was running a fever. And the several hours I waited to see my boys truly felt like weeks. Definitely not one of the more fun days in my life but certainly one of the more important and exciting.

December 11th was the start of a new chapter for our family. Neither of our children have required dialysis since and our two year quest to get both of our babies transplanted had been achieved. We felt great relief and pride and joy that night as Max came back from his surgery peeing and stable. Our happily ever after had been reached. I will always smile thinking about December 11th, at Max’s chance at a whole new life and at his closure on dialysis.

And now here we are one year later and Max is still peeing, his kidney is going well and we celebrate a full year of post transplant life for Max! And a full year free of dialysis for our family!

I never actually posted here for Addie’s first kidneyversary. I had posted for 6 months post transplant and I did not have much more to say on top of that post. You can see that post here... . And I put wonderful happy joyful photos on Facebook. One reason I never wrote a proper blog post was because I felt so overwhelmed with emotion at that milestone. It was like trying to write my wedding vows- how could I ever find the words to write about one of the most significant moments of my life, about giving Addie the gift of my kidney and then seeing a true miraculous healing. And still, when I think about May 8, I get a lump of joy in my throat. I still struggle to find the right words to thank God sufficiently enough, to explain to Addie its significance enough.

For very different reasons, it has been a struggle to write a suitable reflection for Max’s one year kidneyversary as well. This last year for Max has been incredibly difficult. While Addie’s transplant was followed by a year of health and development and amazing stress free joy for her, Max’s has been entirely different. Following a reasonably stable 18 months on dialysis with minimal hospitalizations, Max has had so many infections and ailments and we have sat at his bedside wondering whether we were losing him. He has suffered. Not all the time, by any means. But far more than any precious boy should have to in his life.

And it’s not his kidney’s fault. Granted, the immunosuppression medications to prevent rejection may have made some of his illnesses worst. But mainly, it’s just been a rough year. As he gets bigger and older, some of the symptoms of his cerebral palsy have become more pronounced. And to some degree it has just been bad luck for Max, like getting RSV five days after transplant. We do not for one second regret transplanting Max nor feel it made him overall less healthy or happy. We will always know that it was the right choice for Max. But looking back on this last year, it’s hard to see past the scares and tears. It’s hard to see the miracle for all the difficult memories.

But as I was beginning to write this post, I felt God really reminding me that Max’s story is not about what all he has suffered, but rather what all he has SURVIVED. Max’s transplant story is not less of a miracle because he endured more, it is more of a miracle because he overcame more. For all he has been through, today we have Max here with us. And his kidney is still doing well. It is undeniably a miracle and we are so incredibly thankful.

In the last year since his transplant, Max has 
  • A deadly RSV infection that resulted in 6 days on a ventilator and 4 weeks in the pediatric ICU
  • A staph infection increasing his post transplant admission to 7 weeks
  • A UTI that traveled to his kidney and led to an 8 day hospitalization
  • A stomach bug that led to dehydration that impact his kidney and led to 15 days in the hospital
  • A kidney biopsy that revealed active rejection and required IV steroids
  • Three long weeks with dramatic seizure like spells following going on the steroids
  • A week long hospitalization for his spells (diagnosed as dystonia) causing him to miss his uncle’s wedding
  • A particularly bad g-tube infection that led to a 6 day hospitalization
  • A respiratory infection that led to a 3 day hospitalization
  • And finally, a completely unexpected near death crisis due to carbon dioxide accumulating in his body while at home which led to 3 days on a ventilator and 14 days in the hospital

We could look at this list as a sad list- a representation of all that Max has suffered through.  But we are choosing not to see it that way.  Instead we are seeing at Max's victory list, his badges of honor.  A list of all the miracles God has done in his life.  Through each of these trials, God has been with Max and protected him and preserved both his precious life and his valuable kidney.  And today Max's kidney function is great with no indications of rejection.  We have no idea of what the future holds for Max but we pray that no matter what storms the future holds, that God would continue to protect him and give us wisdom to care for him.  We would love smoother seas and easier years but we don't need that to be thankful and to recognize the miracles.  We just praise God for a miraculous year of survival.  We are simply overwhelmed with gratitude that Max is alive and not needing dialysis and warming our hearts with his famous smiles.

And for that reason, even though it has been a turbulent year and an entirely different experience to Addie's transplant, Today we celebrate.  We recognize that sometimes miracles are dramatic turnarounds. Sometimes miracles restore health completely and take our breath away.  But sometimes miracles are the victory of surviving day to day.  Perhaps less spectacular and exciting to witness but absolutely no less miraculous.  Therefore we will celebrate Max's kidneyversary with equally grateful hearts and will continue to pray for more and more miraculous days ahead for sweet Max!!!

Max's Transplant Journey in Photos: 
December 10th, 2012- Daddy and Max heading to the hospital,, after his last ever dialysis treatment!
December 12, 2012- Daddy gets to see Max for the first time after surgery.  Daddy is doing great, Max is still pretty out of it and recovering. Check our all the pumps, he was on some serious meds!!

December 14, 2012- Max seems to be recovering from surgery.  The breathing tube is out, he is awake and peeing and doing well

December 17, 2012- A unexpected and frightening turn.  Max developed an RSV infection and was unable to breathe sufficiently on his own and had to be placed back on the ventilator.  His kidney began to shut down in response and he was one day away from needing to go back on dialysis when he did start peeing again. 
December 22, 2012- I will always think this is the saddes photo ever.  It was Max and Addie's second birthday and we had order banners and wrapped presents.  Max was on the ventilator and completely sedated and given medication to prevent any movement, basically in a medically induced coma.  His vitals were all over the place and I was so worried.  We tried so hard to still celebrate but it was so sad and trying so hard to be happy was difficult.  This picture reminds me so vividly of the emotions of that day. 

December 25, 2012- Christmas Day in the PICU.  Max had been extubated so was no longer on the ventilator or completely sedated which was great but he still felt terrible and spent the day either asleep or coughing.  Thankful for nurses and doctors who work holidays taking care of our sweet babies. 

December 26, 2012- During his hospital stay, Max was covered in love by his parents, both sets of his grandparents, his Uncle Adam, Aunt Emily and Uncle Lachlan, as well as many of my aunts and uncles.  We know he felt his love encouraging him to keep fighting and stay strong!

December 27-29, 2012- Max is feeling better and gives us his first smile in 16 very long days of missing those precious smiles!

December 30, 2012- it is two steps forward and one step back recovering from RSV.  After a week of breathing without the ventilator, Max tires out and needs more support again.  Avoids the vent again but requires BiPap for 5 days, which is no fun at all for him. 

January 3, 2013- Max is breathing better and is able to come off Bipap and back on just a canula.  He is very excited to lose the big mask!  He is still pretty puffy from his kidney's sluggish recovery.

January 5, 2013- Mommy has to leave Max still in the ICU to go home to Texas.  Very hard day for Mommy. 

January 25, 2013- After nearly 7 weeks in the hospital and another complication (a staph infection), Max is finally released from the hospital to finish recovering in California at the apartment with his Daddy and grandparents and aunt and uncle

February 23, 2013- After 11 weeks apart, Max and Daddy return to Texas!!! Our family is reunited!!!

November 8, 2013- A year filled with many ups and many downs.   One month ago Max was as sick as he was at his worst with RSV.  He was again on a ventilator fighting for his life.  Thankfully he is a fighter!!! Another thing for him to survive and conquer! 
December 7, 2013- For all he has endured this year, Max is still the happiest boy I know! His smiles melt hearts and he is a great joy in our lives.  We feel so blessed to celebrate his victories!

Friday, November 22, 2013


There are a lot of phrases I hear a lot but one of the most common I get it something along the lines of how do you do it, or I wouldn't be able to do it or don't know how you do it.  Sometimes I know it's just something people say to try and show that they do get how big of a deal it is and to show empathy.  I actually really like it when people say that- I way prefer it to some other things I hear a lot.  Because what we have been through is huge and difficult and I really do appreciate it when people understand that it is hard to balance and manage and that none of my decisions have been easy.  Most of the time I just reply with well, you just have to do what you have to do.  Or something of the like.  But I thought given it's been a particularly crazy couple of weeks, it would be a good time to give my advice or tips on how I survive times like this- partly to help anyone reading who is going through a hard time but also partly just to reassure everyone that I am hanging in there and to give you a little glimpse into how I do get through these times!


1. Trust:  Trust God first and foremost.  And then trust the doctors.  As a parent it is so hard to accept that you cannot fix everything and that there are limitations on what you can do for your child.  And nothing makes you feel more helpless than when your child is hooked up to machines you cannot operate receiving medicines you cannot even pronounce.  You have no choice but to trust the doctors who truly do know more than you do and who want nothing more than for your child to get better.  This does not mean not to ask questions, challenge if need be and always teach them about your child.  It does not even mean they will always make a perfect decision.  But at the end of the day, you just have to trust them.  You'll go crazy otherwise.  And really you can trust them, because it comes back to the first and foremost part- trust God.  Because really He is in control, not the doctors. 

2. Eat Cupcakes. Sometimes calories do not count. So eat lots of cupcakes.  There are times to care about eating healthy and about your body.  When Max and Addie came home from the NICU I knew it was time to get my pre baby body back and I did.  And there have been times I have worked out lots and really prioritized eating carefully.  But when one of them is really sick and in the hospital, yep not the time.  It's the time to eat Bugels and Reece's pieces and anything that makes those days just a little easier.  Cope now, diet later. (says me who does admittedly have pretty rocking metabolism...!)

3. Plan for a future.  Make decisions assuming there is going to be a long happy future.  There is that great Tim McGraw song about 'live like you were dying' and as much fun as sky diving and rocky mountain climbing sounds, you cannot live thinking they may not survive.  My kids were born with the odds stacked against them.  We were told they may not survive and since then we have faced many life or death moments.  But if I lived each day like it was their last, I wouldn't make Addie wear her patch.  I wouldn't waste time calling therapists and insurance companies.  I'd quit my job.  We wouldn't worry about labs or procedures. We would not have wasted time on dialysis and we wouldn't worry about medicines and checking levels. And we wouldn't be building a future worth surviving for.  By all means, take things one day at a time during crises.  And yes enjoy and soak up each and every day.  But live like there will be thousands more.  Plan for those thousands, make hard decisions to make those thousands better.  Don't live like they are dying.  Live with faith they aren't.

4. Laugh It's okay to cry.  It's also okay to laugh.  Lots of people will tell you it's okay to cry.  Honestly when I'm in the middle of a crisis, I don't cry.  I go into this robotic numb mode where i just focus on what next and on the numbers and on trying to make sense of things.  Sometimes it stresses people out and makes them feel the need to tell me it's okay to cry. I know it's okay.  It's also okay not to.  We had this one NICU nurse I loved and on a really bad day when Addie was so sick and intubated and I felt so hopeless she told me this hilarious story about a British phone booth her husband built for her.  And it made me laugh.  And I loved her so much for understanding that it's also ok to laugh.  My  Even when your kids are sick. Sometimes you will laugh and it will make you feel better.  And then you might cry alone in your car the whole drive home.  You have enough to worry about... don't second guess your emotions.  Just feel what you feel.

5. Grow Thick Skin. People do not know what to say.  Don't hold that against them.  I could write a book of some crazy things that people have said to me.  From the comical to the downright offensive, I've heard it almost all.  Recently I presented Max and Addie's story to students at my school and a boy asked if I was planning on getting my kidney back from them?!  People don't know what to say, and they want to say something to show they care.  Sometimes they get it wrong.  Just let it roll off your back.  Appreciate that they tried and smile. You need friends and support.  You cannot afford to be oversensitive.  And worse than the bad comments are the people who say nothing.  Who actually seem to avoid you.  Forgive them.  They are just scared of making it worse.  They are overwhelmed because they haven't walked in your shoes.  They don't mean to be hurtful, they in fact are trying to avoid that.  Always assume the best of others because you are in enough pain without getting hurt by how other people handle your situation.

6. Wear Mascara.  It really makes people think you are okay and relaxes them.  When I forget to wear mascara people seem very concerned about whether I'm sleeping enough or if I've just been crying.  It seems to encourage a lot of worried glances and people avoiding you.  On the other hand, when I dress up and have my make up on, people always look relieved.  And then they feel like they can ask you how you are or make a joke.  They relax, you relax.  I always think of the commerical "Maybe she's born with it, Maybe it's Maybelliene'.  Sometimes it is okay to wear your heart on your sleeve, but sometimes it really helps to Cover Girl up the pain and look brave!

7. Take a lot of pictures.  Savor every good moment and document every bad one.  I take pictures every day.  I have this thing where I have to have a picture of them in every outfit they own.  I think it's pretty standard for moms these days, we all snap away on our phones every expression they make.  Don't take less pictures when they are sick.  Don't let tubes and wires hold you back.  Take tons of pictures.  This is their childhood and it is as worthy of being remembered.  You'll look back and remember the good.  You'll also look back and see how far they have come.  I really wish I had more sick pictures.  They are actually among my favorites now because they remind me every day what we have come through.  I did not want pictures of them looking sick in the NICU, and I hated pictures with the feeding tubes in their noses.  But now I wish I had more of those.  Because pictures of the bad times serve as reminders of all we have survived. Now, I take pictures of everything.  I took pictures of Max on the ambulance stretcher the other night.  I won't post it or even show it to people.  But it is an event in his life.  One more thing he survived and pulled through and I want to remember that.  So, Keep taking pictures!!

8. Be where you need to be.  Don't worry about what other people think about where you should be, follow your own heart. I care a lot about what other people think of me.  And when you have a kid in the hospital, people seem to have a lot of opinions.  And I've had to accept I will never please everyone.  Some people think it's crazy for me to work and that a good mom should be at the hospital.  Some people think I need to be home with Addie and make sure her life is normal as possible.  Some people think I need to try and work because that is how I support my family and ensure their future.  So no matter where I am, someone is going to think I should be somewhere else.  Pray and ask for wisdom on where you should be.  I take it one day at a time making those decisions.  Sometimes I do need to be with my family, for them or for myself.  But other times, I need to continue working and living our normal life because for us anyway, medical crises are part of our lives and I cannot put life completely on hold when they happen.  I hate having to work when they are sick, but sometimes I pray and I know it is where I need to be for my family. And for the 180 teenagers I am responsible for as a teacher.  And once I make a decision on where I should be, I just have to be unapologetically there.  And not worry about where other people think I should be.

9. Keep busy. Find something that keeps your mind busy and helps you release some stress.  I know exercise is a great one and I would love to say that I go to the gym and run my stress off.  But honestly with work and needing to be home with the kids, I do not usually get to exercise when I'm stressed.  Instead I have a very strange vice- I love crafts.  When I am stressed, nothing is quite as calming as my paper cutter and laminator.  The people who work with me know that when I'm happy and doing well, I'll be working peacefully at my desk making worksheets or calmly entering grades.  But if I am going through a hard time and stressed, you will find me chopping colored cardstock and laminating anything I can think of!  It makes me feel productive and like I can accomplish something!  Find something- cooking, cleaning, exercising, knitting... something that makes you feel busy and like you are doing something and not just stressing and panicking!

10. Don't compare.  Problems.  Or Kids.  I saved this one for last because it is probably the hardest but most important thing I try to do.  (You will notice there are a lot of cliches I have not included like 'ask for help', 'eat healthy' or 'join a support group' because even though they are great advice, I just do not do them! So this is not my list of how you should handle things but just my list of how I do handle them!!) Anyway, this last one is so vital when you are living with medically fragile and developmentally delayed kids.  But it's a lot harder than eating cupcakes and laminating!  You have to learn not to compare your kids and your life to anyone else's.  I get on Facebook and I see posts about 2 year olds reciting Hamlet's soliloquy (okay maybe not but you get my drift!) and it's hard not to feel a bit sick to my stomach that Addie isn't talking.  Or I see pictures of 2 year old boys 'being boys' running around rambunctious and my heart hurts again for Max's immobility.  But I have to work really hard not to be jealous.  And to still be excited for my friends kids accomplishments.  My kids have lived a completely different life.  To compare them to other kids their age is pointless.  I need to rejoice in their accomplishments and still feel complete joy that is not dampened by realizing that other kids their age are doing 'more'.  And I need to still be excited for those other kids.  It's a hard thing to do and I do not always manage it as well but most of the time I am able to do that and avoid those comparison feelings.

Along with that, you just cannot compare your problems with other people's problems and stop feeling concern and compassion for others.  Perhaps if there was an objective meter of stress or sadness, my life might beat someone's else and then it would be easy for me to think 'that is your biggest concern?!'  I know how easy those feelings can come but they do nothing but isolate you.  Yes, I carry a heavy load and my life contains stress and pain other people's do not.  But, they still carry their own burdens and they still feel their own stresses and pains.  And while an objective scale could deem them lesser, they are every bit as real to the person experiencing them.  And they still need my kindness, concern and care as much as I need theirs. Problems are problems and sadness is sadness.  Do not get caught up thinking about whose is worse. It is a recipe for self pity and anger and will do nothing but make you less happy and isolate you.  Rejoice with others and support others.  Do not let your crises trump theirs and rob you of your own compassion.  Don't compare, just continue to listen and love and support.  And then they will do that for you as well.  And you will come through this with stronger friendships.

So those are my tips for how I cope in times like these.  It is what works for me but I also know that every person just has to work out for themselves what helps them through.  I am very blessed with amazing parents and great friends who cheer me up, pray for me and shower me with love and concern.  And my faith and the prayers of others lift me up and enable me to get through times like these.  It's not easy but I am okay. I haven't lost my mind yet, or even my sense of humor.  There are days that are especially dark but I certainly have not lost my joy, my hope and my ability to laugh.  I know people worry about Max and I also know people worry about me.  So I just wanted to write and let everyone know that I do have my own quirky coping techniques and I am still me- trying to find something to laugh about, wanting to be honest and share the struggles, and every bit as determined to stay strong and happy for the bravest and most beautiful babies in the world! 

Wednesday, November 20, 2013

Our Shocking Turn of Events- Part 2

Last November I wrote 25 blog posts!! I was attempting to write one a day as part of some blogger appreciation month and I came pretty close.  There was a lot happening leading up to Max's evaluation and so the timing worked well to write a lot.  When this November rolled around I contemplated whether I would try to write almost every day again but ultimately I decided nothing was really happening to write about.  We were living with our long term issues but nothing dramatic or noteworthy was really occurring.

Hahahahaha.  Really, have I not learned to think or say things like that?!   There are several surefire ways to bring on a crisis in our world:
-Comment about how good and uneventful things have been
-Write positive cheerful posts about how good and uneventful things have been
-Buy tickets to an event or vacation
-Book a photo session for the kids

So as November began and I declared I wasn't going to blog because nothing was happening, I should have seen it coming.  Then on my dad's birthday we went on and on about how good the past few weeks had been with Max not being sick.  Oh and my mom got him tickets to see Harry Connick Jr.  And she booked a holiday photo session for the twins.  And then last Friday I posted a very happy post on Addie's 18 month kidneyversary about how far we had come and how the worst was past us.

I mean, really, we were begging for drama!!


Anyway back to where i left off...  Last weekend Max had begun to stabilize and by Sunday, he was going stretches without requiring help from the ventilator.  For a day we thought this huge scare might actually blow over pretty quickly.  They extubated Max late that night and within hours had him just on a canula and then packed him up and moved him out of the ICU and into a normal hospital room.  I went to work Monday thinking wow what a crazy weekend but thinking things were heading in the right direction.

Then Monday night, he took a turn for the worse.  He started having more issues keeping his oxygen levels up and the cannula was not providing enough help.  So no sooner than 3 hours after leaving the ICU, he wound up right back there and on Bipap which is like a non invasive ventilator.  It does not involve a tube down the throat but instead a mask.  But unlike CPAP it provides actual breaths for them, using pressure.  So it's somewhere between a ventilator and CPAP.  It is the most support you can get without being put back on the vent.  And throughout the day Tuesday he continued to seem very on edge.  His organs actually started to act up and his kidney was not working well and his liver numbers were off.  Then some results came back showing that the tube that had been down his throat over the weekend was growing bacteria, suggesting he may be at risk for getting sick from that.

So by Tuesday night, I was back to feeling scared and overwhelmed and unsure of whether he was stable or heading back into serious trouble.  I took Wednesday off so I could spend the day at the hospital with him and prevent myself from completely wearing out emotionally and physically.  And while I was definitely where i needed to be, I will admit I did not leave feeling any better Wednesday night.  He had a bad episode dropping his oxygen saturations while on Bipap and I was concerned he was heading towards needing the ventilator again.  Having now spent so many days in a row really worried about if he was going to pull through this was really weighting me down.

I went to work Thursday and it ended up being a really rough day at work on top of all the stuff with Max I was thinking about.  It was probably one of the worst work days I have had this year and I was definitely close to breaking point by Thursday afternoon as I drove back to the hospital exhausted.  Thankfully though I was met with good news, Max had a better day and had come off the bipap machine and was on a high flow canula and seeming to do okay.

I think Thursday evening was really the turning point for Max.  6 days after our initial scare, he seemed to finally really stabilize.  Of course we were only very cautiously optimistic and still very worried he would head back the other direction.  But he has steadily improved since Thursday night.  It's been a reasonably slow recovery but he has made small steps in the right direction each day and none in the wrong direction.

Now he is in the hospital on the main floor, not the ICU, and should be coming home in the next couple of days. Once he stabilized our attention turned from just making sure he was okay to trying to understand what happened and how we could prevent it happening again! And that is the million dollar question right now.  I really wish I could tell you that we totally understood what happened and that it was a rare bad bug that we feel confident would never happen again.  But unfortunately that is far from the case.

We honestly do not have a really simple or clear answer as to what caused him to get that sick last Friday.  They have done tons of tests but not got a positive result for anything.  In absence of anything else, we are thinking he must have had a minor cold that did not even have any real symptoms yet.  Al had a cold the weekend before and Addie has been battling a runny nose so he definitely could have had a cold.  But we never so much as wiped his nose or noticed him coughing more.  Hardly an obvious culprit...

What we do understand is that Max has a few issues that make him susceptible to running into serious breathing trouble.  For starters, Max doesn't breathe a lot.  He never has.  We used to watch their screens in the NICU and Addie would breathe a normal 30-40 times a minute (babies should breathe more) while Max would breathe only 10 times a minute.  Before we saw any other signs of CP, this low respiratory rate stood out.  He seems to manage to keep him oxygen up and cope with his low breathing rate but he pretty much breathes the minimum he can get away with.  And we suspect therefore that his carbon dioxide levels may always be a little elevated, or at least rise quite periodically with any stress. He is okay with them a bit higher but it means he doesn't have a lot of room to get worse.  He basically sits on the fence of being okay all the time.  It would not take much to tip him over.

On top of that kids with severe CP have issues with 'secretions' meaning that they can drool some and not always have strong swallows making even keeping up with their own saliva tricky.  If you add in a cold with some junk in his throat and just keeping up with his breathing with all that extra spit happening can be really tricky.  It's actually one of the biggest issues that kids with CP can face as they get older and it can lead to these kind of dramatic respiratory problems.

Then finally Max doesn't have the ability to compensate or react naturally when he does start running into trouble.  When Addie was really sick with heart failure, she was breathing 100 times a minute.  It was really sad but it was actually an adaptation.  She was breathing more to make up for her breaths being less effective and her heart needing more help.  She did not decide to do this because she is a genius with excellent problem solving skills (although of course she is that!) but her brain just received messages that she was in trouble and needed help and triggered that reaction. It is just our bodies normal survival mechanism.  Unfortunately with Max's brain being compromised, this mechanism just does not work.  And we have seen evidence of that several times.  When he starts running low on oxygen or high on carbon dioxide, his brain does not send a signal to correct and he behaves completely differently that a healthy child would in such a situation.

And this last piece of the puzzle is probably the most frightening because it is why things can escalate so much faster.  His body doesn't give him any extra time by working against the situation.  The paramedics were blown away by this.  They could not get over how sick he was and that he still wasn't breathing more. It's very unusual and makes predicting things with Max very hard.

So it seems like a cold may have caused some extra snot and junk that played up with his natural tendencies to not breathe a lot and not compensate and created a perfect storm for a respiratory disaster.

Now his cold has cleared up and his body has recovered from the events and he seems to be close to back to his normal, although still somewhat more agitated. He can come home and he would presumably go back to how he was before which would be seemingly fine but clearly way too close to disaster for our comfort or his safety. So, we are in the process of figuring out what we need to do to get Max a little further away from the fence of being okay and give him more support to prevent him getting that sick in the future. So far, we are starting him on medication to actually reduce his 'secretions' meaning he would actually make less saliva so that he would not have to work so hard to swallow it. We have applied for home nursing and he will have his own nurse in our house for however much he ends up getting approved for, but we are looking at probably 12 hours a day to keep an eye on his while he sleeps and also to suction him and keep working on preventing the whole secretions building up dilemma. The nurse would also help up with his not having a lot of compensatory skills because it would be someone else to watch him, take his vitals and check his oxygen and help us catch things as early as possible.

The remaining piece of the puzzle so to speak would be to see whether we need to solve his high CO2 not breathing a lot issue. One option would be that he actually sleeps on BiPap every night. While he asleep, the machine would make him take more breaths and bigger breaths and help him clear out a lot of carbon dioxide and prevent his levels from creeping up or elevating at night. It would in some ways be a big deal but it is not invasive and definitely a better step for him that a tracheotomy and home vent would be so we are interested in the idea. His doctor told us he may also have more energy during the day and feel better for having better nightime breathing.

So that all sounds good but turns out insurance companies are not crazy about buying people expensive breathing machines without being sure they are necessary (personally I haven't heard of a lot of people trying to sleep on breathing machines for fun, but okay)- so in order to get one, he needs to go to a sleep lab and have his sleep patterns on and off the machine assessed. Which is good because we want to be sure this machine would be the best step for him before committing to it ourselves. So sometime in the next couple of weeks, once home from the hospital, he will visit the sleep lab and we will determine the best thing for him there.

And that is where we are at now. So incredibly relieved and grateful that he has made such a good recovery and so happy to see his smiles and know he will be home with us soon!! And then just trying to make good decisions for his future safety. We are shaken up by this event and I know it will take me a while to sleep well again once he is home. And we also know that although we will make these changes and pray they really help Max, he is a fragile little boy and he will have medical issues in his life. So we are just committed to enjoying his good stretches, praying for him every single day and night and being alert to changes in him and determined to do the best we can when he does get sick and these issues occur. If you have made it through all this, you are truly impressive because I know it has been long and medical! I just wanted to explain where we are at and what all has happened and will be changing going forward! I will write again soon and talk more about my feelings and how I have coped with all of this and how we are dealing with all of the changes coming. I know some people are more interested in the medicine and some are more interested in our emotions and experiences so I try to include both on my blog!

Thanks again for the prayers and support!!

Saturday, November 16, 2013

Our Shocking Turn of Events- Part 1

Last Thursday night I came home from my first day of presentations feeling very excited and energized.  Initially I had been nervous about sharing Max and Addie's story with all the students in my school but as I started, I got excited sharing how far they had come and how much our family had been through and survived.  The students were so engaged and the feedback was great but most of all, I was filled with this sense that we were truly on the other side of all that now.  Dialysis was part of our past and the pain and fear associated with those stories was finally numb enough that I felt I could share them with joy that we endured them rather pain at recalling them.  I drove home with a smile and Al and I loaded up the kids and went to celebrate at Chuy's... lots of queso and smiles from everyone and it was a happy night.

Friday morning I woke up, changed Max's diaper while he was asleep and headed out for day 2 of presentations.  My voice was hoarse and my energy draining but as I finished presentation 13, I was smiling a huge victory smile and laughing with my co workers about how we were going to get onto Ellen! I drove home and met my mom and Addie in the driveway who were coming back from a day together.  I walked inside and just like that, my excitement evaporated when Al told me that Max had been sleeping all day and was turning a blueish color so he had set him up with the oxygen we have at home.

We have oxygen in our home because when Max was small he had problems with his airway shutting when he was mad and not re-opening without intervention.  Until he was 18 months old, he slept with an oxygen monitor so that we had peace of mind to sleep.  We used the oxygen maybe 5-10 times in that 10 months, usually for a matter of minutes to get his oxygen levels up after a breath holding incident.  And in 18 months since Addie's transplant, we have not used the oxygen once.  He has not been sleeping with an oxygen monitor.  It was stored away in a closet with some random dialysis supplies and baby clothes, all a part of the past, things that linger past their need or use.

I include that information so that you understand that Max requiring oxygen was completely unheard of these days.  Max being sleepy seemed unusual also but he has been known to sleep on strange schedules so it was more that he needed oxygen that alarmed me.  Al and I talked about the best thing to do now and I was adamant he needed to go to the hospital.  Al tried to see if we could Max to wake up to assess this sleepiness and although he did flutter his eyes open a couple of times and move to our touch, we could not get him to wake up.  When we took the oxygen away, his saturation levels dropped incredibly low into the 40s within minutes.  I was now sure this was a very bad situation so I started getting ready for the hospital. I had texted his kidney doctor and she responded and told me I needed to call an ambulance because it was too risky that he could get worse and end up requiring CPR or intubation which I would not be able to do. When she said that, it really started to sink in that this was in fact a very serious situation.

So for the first time in their very eventful lives, we called 911.

I suppose given how sick they have been and how much time we have spent in hospitals, it is actually pretty amazing that this was our first 911 call and first ambulance trip.  But because it is something we have never had to do, it was extremely scary taking that step.  The paramedics arrived and I am trying to answer their questions while distracting Addie who seems most concerned that they have come for her.  My mom comes and gets Addie and we get Max loaded into the ambulance.  I mentioned he would need to go downtown so probably better to go ahead and take him there.  After a few minutes sitting in the driveway the paramedic supervisor arrives and assesses the situation and comes to tell me that we cannot go downtown because they do not think Max is stable enough to make it that far and that they want him at the nearest ER.

It has been since they were 3 weeks old that we were in a Woodlands hospital.  We always go downtown. We knew he would end up needing to be there but the fact that they did not feel it safe to take him there then really frightened me.  I ended up driving behind the ambulance.  Emily, Al's sister, rode in the ambulance with him as she doesn't drive here and we needed someone to drive the car there.  Al had a stomach virus so he stayed home.  Driving behind an ambulance that has your son in it who you have just been told is not stable enough to take 45 minutes away is so terrifying, I cannot even describe it.  The ambulance actually did not use it sirens until the last 5 minutes of the ride when suddenly they turned them on.  I had no idea why but you can imagine the places my mind was going to those last five minutes...

We finally arrived and they wheeled Max out and they were bagging him or giving him breaths.  It was a really scary sight.  They got him in and set up on the oxygen and he was actually more awake and fussing and responding well to the oxygen and there were a few minutes when we thought maybe this was going to be okay and we had just overreacted.  I had just started to calm down from the ambulance fear when they got the results back from his 'blood gas' or a quick spot check of his blood...

What the blood gas looks at is the about of oxygen in the blood, the amount of carbon dioxide in the blood and the pH or acidity of the blood.  I wasn't overly familiar with blood gas values prior to Max's RSV drama since my kids issues were kidney related rather than lung or respiratory related.  But after the month long RSV battle, I was well versed in making sense of blood gases.  Which maybe was a good thing because when he told me that Max's pH was 7.11 and his CO2 was 102, I knew exactly what that meant.  Then again, maybe it was a bad thing because I knew exactly what it meant.

At his worst with RSV, they put Max on a ventilator for a pH of 7.17 and a CO2 in the upper 70s.  And I knew that he was dangerously sick.  So when I heard that his blood gas was considerably worse than his very worst with RSV, I was absolutely staggered.  And I understood that he was not just sleeping all day, he was actually drifting in a coma.  And when the paramedics questioned whether we would make it downtown, they were very wise to do so because with that blood gas, he would not have survived very much longer.

And to think- what if we did not have oxygen at home?  what if we decided to wait a few more hours and see how he was?  what if our doctor had not told me to call an ambulance and I had been stuck in traffic? None of those thoughts are helpful because God did protect Max and we did get him there in time.  But I wouldn't be human if I did not admit how many times I had thought them.

What the terrible blood gas was telling us is that Max was not exhaling enough.  Well really he wasn't breathing enough period but since we had oxygen at home we had managed to blow enough oxygen at him to compensate for the oxygen at least.  But while we managed to help him inhale more oxygen, he was still not able to exhale enough carbon dioxide.  And so that waste product was just building up in his blood and turning his blood acidic.  Which caused him to get very sleepy and head into an altered state of consciousness.

At this point, it was urgent that we get Max on a ventilator that can breathe in and out for him and get rid of the CO2 that was built up in his blood.  So the ER intubated him or placed the breathing tube down his throat and got it all set up breathing for him.  Once that was done, we had a moment to breathe and finally ask the question:  HOW DID THIS HAPPEN???

At that point we had no idea but one leading hypothesis was that he may have aspirated or choked on some of his own vomit (a big risk for kids with CP) and that he now had pneumonia growing in his lungs.  With him being immunosuppressed it could have made him incredibly sick very quickly.  They got chest X rays and started IV antibiotics.  But the doctor warned me that if it was aspiration pneumonia and he was already that sick, he may get worse throughout the night before the antibiotics kick in and could become septic and crash. Truly horrifying words.

I try to avoid superlatives like 'the worst ever' because there have been a lot of really terrible days in this journey.  So I don't want to say it was the worst day ever but I will say it was the single most terrifying series of events.  I have never before been that worried about losing one of my children.   And that is saying a lot given I have watched Addie be intubated after turning blue in my arms when she was in heart failure and I have myself performed CPR on Max at 4am wearing lingerie.  So... I've seen a lot of things and I thought for sure the scariest moments were past.  But standing in that unfamiliar ER knowing what his blood gas told us and not knowing how the night would go has got to be the scariest night yet.

The night got better just as more time passed and he did not seem to be getting worse.  They arranged to transfer him to our city hospital and my wonderful best friend Shannon came to the ER and drove me downtown so I didn't have to be alone.  She stayed him me while we waited for them to get him settled in the PICU and into the early hours of morning as I waited and waited to see if he was better or worse.  Finally I felt content that he was not becoming septic and I attempted to get some sleep.  It was hard to believe it was still the same day as my presentations!!!

During the course of the next day it started to seem less and less likely that it was pneumonia as Max seemed stable and not like he was getting worse.  They did tons of bloodwork but day by day everything was coming back negative.  By Sunday evening, the doctors had decided he must have just had a random respiratory virus, essentially a cold, and it just hit him really hard.  He seemed to be requiring less and less from the ventilator and seemed to be recovering.  And I felt enormously grateful that he was doing so much better and at the same time, so incredibly confused as to how exactly this had happened... and how we were going to prevent it happening again.

... To Be Continued!

This has already been super long and I'm exhausted so I will finish the story of the rest of the week and where we are at now with understanding what happened and preventing it happening again in the next couple of days! As of right now, Max is being moved out of the PICU and into a normal hospital room so we are praying this is a permanent move and that he stays stable and keeps getting better and ready to come home!

Thank you to everyone for your prayers!!! It was so great that I could get on Facebook and ask for prayers for Max and know that at those moments he most needed them, he was being covered in prayers!! So blessed by all the support and love!

Sunday, August 25, 2013

A Wonderful Summer and a Fresh Start

This week was my first week being back at work after 10 wonderful weeks home with my family. It was tiring and I missed the babies terribly but I was happy also being back because I did have such a restful happy summer and because I am really optimistic about this next school year.

Summers off are one of the undeniable highlights of being a teacher.  And the past few years, they have been invaluable for giving me time to deal with the babies' medical issues.  2 summers ago I lived at the NICU for 10 weeks, staying the nights there, getting trained and ready to bring the babies home.  I was there when Addie was her sickest ever in heart failure and I was there the week we finally loaded Max into the car thanks to my summer off.  Then last year, the summer off provided me the perfect time frame to give Addie my kidney and spend the summer in California recuperating with her.  We made it back with a few weeks before school started to get lots of important things done at home.  My summers have been huge blessings because I really needed those gaps of time to focus just on being their mom and taking care of their needs.  But the summers have not been relaxing, or restful or a chance for much recharging.   And as a result, I will admit I have been growing more tired as the school years progress on and my energy and strength have been tested with medical dramas throughout the years and during every break.  So this summer God gave me exactly what I needed- rest.  Time to exercise and get some sun.  Lots and lots of play time.  Plenty of sleep.  This summer I was blessed with a much needed chance to be refreshed.  To reconnect with myself, and get to just love on my family. 

Lots of pool time this summer, and some swinging too!

Lots of smiles and loving mommy time this summer

Some good twin bonding this summer

Children's museum this summer

Helping Nana recuperate this summer

Loved our time with Marnie and Gigi and Aunt Emily this summer

Discovered Duplo this summer, and Gymboree

Our summer was of course, not completely without drama.  As I wrote about in my last post and have talked about on Facebook, we had a couple of significant medical issues.  We had a scare with the babies' liver enzymes being very elevated which led to a month of worrying and extra labs and bloodwork.  Thankfully though, the issue did not require any intervention and their livers miraculously have returned to normal functioning.  Most likely they both had an unknown virus that was impairing their liver and due to their immunosuppression, it just took them a long time to clear the virus.  I had a couple of rough days really worrying about it and plotting when I could start giving away pieces of my liver, but it was not really a huge drama.  No nights were spent in the hospital and it went away as suddenly as it came about.

The biggest deal of our summer was Max's rejection episode and subsequent problems while on high dose steroids.  Three weeks into summer we got the disheartening news that Max's body was trying to reject his brand new to him kidney.  He spent 5 nights in the hospital and came home on very high doses of prednisone, a steroid, to try and heavily suppress his immune system to shut down the rejection.   About a week after his steroids began, he started having these awful stretches where his body would thrash outside his control and he would scream and wail for hours at a time.  He would get incredibly sweaty and worked up but could not sleep.  Finally after crazy long stretches without sleep (I counted 39 hours on his last one before he was admitted to the hospital), he would fall asleep and sleep for a few hours before it started again.  He did not have a fever or any indications he was sick but he clearly was not ok.  We took shifts staying up with him.  My in laws were out so thankfully we had a lot of help.  One of the big questions no one could easily answer was whether he was having a seizure at all during these times.  I videoed one of his episodes and probably 100 doctors have now watched the video trying to work out what was happening to Max.

He ended up spending a week in the hospital getting a lot of tests run, including an updated scan of his brain.  The neurologists thought that although he was not having a technical seizure, his symptoms were certainly brain based and symptomatic of brain injury and not a typical side effect of medication.  They were concerned as to whether his brain had experienced any additional damage that had brought this on.  Thankfully the scans showed that although he did have significant damage to his basal ganglia which was causing this, it was no more than in his scans a year ago.  So essentially, Max has damage to the part of the brain that releases dopamine and regulates movement. The simplest way of explaining it for me is that this part of Max's brain looks like someone who is in a more advanced stage of Parkinson's Disease.  Therefore the shaking and tremoring and uncontrollable movements were being caused by that.  The name for the condition is Dystonia which is a neurological movement disorder, caused by his overall diagnosis of Cerebral Palsy.  The neurologists feel that these symptoms would have started at some point based on his brain anatomy but likely the stress of the rejection and steroids are probably what triggered it to come on at this point.

He is such a trooper during hospitalizations

Thankfully once we worked out what was wrong, treatment options opened up.  Max went on Keppra which is an anti seizure medicine which has helped him a lot.  We also weaned his steroid dose way down.  He will most likely end up on dopamine at some point but he needs to get a spinal tap first and that is still being organized.  We also have a medication we can give him if he starts the arm jerking and cannot settle down to control it in those moments.  We have only had to use that medication once because he has really been so much better since getting home from the hospital.  There are still a few follow up things that need to happen.  Max really needs a follow up biopsy to make sure that we did in fact stop the rejection and that he can handle being on a low dose or no steroids.  He also needs a spinal tap so we can get a base line dopamine measure and look into adding that medication.  So stay tuned for more info on those upcoming tests.

The hardest part about the few weeks when Max was so miserable was not the actual medical complexity or hospital time but just simply seeing Max in so much pain and so unlike himself.  Max is our happy boy, he smiles at everyone and everything.  We have never had reason to question whether he has a good quality of life because for all the things he cannot do, he has never shown anything but joy for life and those around him.  Then, suddenly for three weeks, he was a totally different little boy.  He was so sad and miserable and nothing we did could settle or comfort him. It was a really heartbreaking stretch for us because it is one thing to have a child who has medical issues or disabilities, but an entirely different pain to have a child who seems genuinely inconsolably miserable.  Needless to say, we are overjoyed that our happy Max is back and we loved getting to spend the last month of summer break with our cheerful Max who is back to loving everyone and everything!

So that was our medical drama of summer.  But in between all that, we did have lots of fun! I was able to go to my cousin's wedding in San Diego and enjoy time with my extended family. 

Al and I went away to San Antonio for three blissful nights.  It was our first trip just the two of us since our honeymoon 4 years ago and we loved every second.

Then, the absolute highlight of summer was my brother's wedding in late July.  It was probably one of the happiest weekends I have ever had.  We were surrounded with family.  Addie was an angel all weekend, she even made it down the aisle with some urging! And although we missed Max terribly, Al and I really enjoyed time together and time with Addie.  And of course being a part of Adam and Jenny's joy and seeing the love they have for each other. 

And now summer is over and it is definitely a bittersweet thing.  I will terribly miss my mornings home and being so involved in every detail of the kids days.  Having said that, I am excited for this school year.  I work with a great team and I am looking forward to seeing them everyday.  I have spent the week getting my room ready and I am looking forward to new students and a fresh start.  I am so grateful for a job that does reset every year because I get to walk into Monday with a new first impression and a new fresh start.  Which is exactly what I need. 

Three years ago I started the school year 14 weeks pregnant with twins, knowing I would be out a big chunk of the year (of course having no idea what a terrifying year that would end up being).  I was basically not around from Thanksgiving onwards that year.  At least not mentally or emotionally.  Two years ago, Addison came home from the NICU on Sunday afternoon before I met my students on Monday.  Max had come home three days before on Wednesday and scared us to death by stopping breathing within an hour of being home.  Although I was excited to have them home, I will admit I could hardly focus on teaching without worrying about Al being home with both of them on dialysis.  We had someone up with Max around the clock and that whole year was really tough for us.  Addie ended up very sick by Thanksgiving and then I was out the last month for her transplant.  One year ago I started back in a better place with Addie having been transplanted but also knowing we were about to go through all that with Max.  And although I only missed 3 weeks of school, my heart was in California all of January and February.  Teaching while my baby was in a PICU states away was such a challenge.  Needless to say, the last three school years have been tough.  I have made it through but I have gone in knowing I was very distracted and divided.

This year, though, I am starting this school year with no fears, no dreads, no upcoming surgeries.  Goodness knows things will pop up but my babies both have kidneys! The biggest storms for our family have been weathered and we survived.  And my heart and head are in a good place.  I am rested and happy and ready for this.  I remember a sermon where Kerry Shook said 'wherever you are, be all there' and I thought is was great advice.  But I have not done a good job at that as a teacher when my family has been going through such intense crises for three years now.  But this year, my goal is to be all there for those students.  To trust God with my family at home and love every second I get to be home with them.  But to be fully emotionally and mentally committed to my classroom the hours I am there. 

Even if I sure did wish I could look out and see this face: