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: