No Fun

Sam has just had two cannulas/ drips put in, one for Heparin, one so blood can be taken every four hours. To say that the experience was traumatic would be the understatement of the century.  The cannulas went in quickly, first go, but the tapes would not stick to his skin to hold them in place, first through his skin having residue from the wipes used to removed the angel cream and then because he was so worked up through screaming and sweating, nothing would stick.  They tried four times on one arm to get it to stick, and had to remove it each time.  When it was finally sorted they then had to do the other arm while I sat on the bed holding him in vice grip, my legs wrapped around his. 
 With Sam screaming over 'NO, NO NO Not again!!'

Granny and Grandad were there too, struggling not to cry and as usual I remained resolute until he finally cried himself to sleep out of exhaustion.

Then I let my tears flow.

God is still here.  He was holding me while I held Sam, and as I stroked Sam's hair while he slept, he sent my Mum and Dad to stroke mine.

Wish my husband was here.

The afternoon has to improve from here.

We've Made It

Well what a long day it has been.

Today we had a contemplative morning, all of us were a little quiet, each trying to deal with a day that was always going to suck (best word I could think of tonight).

We spent a wonderful morning at church with our church family and Gran Watson too.  They lavished us with love and prayers and encouragement and care.  They truly are an exceptional bunch of people.

Gran, Jack and Sam at Longreach Airport.

We headed out to the airport in the late afternoon, not quite ready to be separated.  Who could ever be ready right?  I was leaving half of my heart behind and half of Don's heart was coming with us. We  both knew the separation would be tough.  The flight was 40 minutes late and we had a very rough approach and landing at Brisbane airport.  It was all a bit scary ( I have a pilot for a husband remember).  A fierce crosswind, some bad decisions and a very fast landing were enacted leaving the tyres a bit thread bare I would imagine.

Sam was really tired on arrival and so we lugged our suitcases and other bags and arrived at Ronald McDonald House just before 8pm.  We did not have dinner, Sam was too tired, so he had choc chip biscuits in his bed for dinner and I will have breakfast tomorrow.  Praise God that we did have snacks on the plane. 

Sam is laying beside me now trying to go to sleep, while we listen the unfamiliar noises and the traffic outside.  We are thankful for a bed and a time to rest now.

Tomorrow is a new day and thank God his mercy and joy are new every day is too.

A Tip For Teeth

Today Sam had his first cavity filled at the dentist.  It was a painless and fun procedure for him, not requiring a needle.  The dentist expressed surprise at Sam only having one cavity because his teeth are quite weak.  This is due in part to his heart condition and the medication he is on.  So we are thankful that his teeth are so far holding up well.  He was very brave at the dentist and loved riding the chair up and down and even got his own take home dental mirror.

The dentist gave us a tube of tooth mousse for Sam to try, so I wanted to tell you about it, for those whose kids may also have teeth issues.  The tooth mousse is rubbed on the teeth once a day with your finger and is milk protein based.  Applied at night it works best to repair damage to tooth enamel, strengthening teeth where there are signs of wear and abrasion.  I have included the link here.  We were also given the same things in chewing gum form.  I am looking forward to using it with Sam, as I want to do what I can to protect his teeth. he doesn't need any further concerns, he has enough to deal with.

In other news Gran Watson arrived today, it is just so wonderful to have her here.  To know that she will be here looking after and loving my family means the world to me.  And in the meantime, Sam and I are packing to leave on Sunday, and making the most of our family time.

Catheter Countdown

Picture source

On this day in a weeks time Sam will be having his cardiac catheter.  Then we will finally know what is going on with his heart in more detail.  It is then that we will know that he is a candidate for the Fontan operation.  You see not everyone with Sam's heart condition is a candidate.  If the pressures in the heart are too high then the Fontan is not an option. So Sam's heart has to be within certain limits for the operation to be an option, and be a success.  It is only after his catheter and after the results are reviewed on Friday next week, that we will have some indication when the surgery will go ahead.  Many people keep asking when the surgery is, but the reality of the situation is that we don't know.

Once we have come through the valley of catheterisation, we then come to the foot of the looming mountain of Fontan.  At least this is our aim.  If not we could be slung into vast space into wait and heart transplant land. (Sorry, I need to make light of this, otherwise it could eat you up inside).

The wait makes me weary.  The planning has to be done, but  most of the time I procrastinate, finding anything to do but what I know I must.  I spend some time each day with God just chilling out and listening to some music.  It is when I feel him nearest and as I close my eyes for just a few minutes I feel His peace settle over me and I can then carry that peace with me through the rest of the day.  I know God is always with me but these times are special to me.

I feel so guilty sometimes just wanting for this time to come and go, when I know Sam has to endure more pain.  What kind of mother thinks like that?  Shouldn't I want to be waiting as long as possible? But I don't, we have been waiting since Sam's diagnosis before birth knowing that this day was coming at some point, hoping that it never would.  I remember meeting families with their children in hospital having had the Fontan procedure when Sam was only having his first surgery as a baby and thinking how blessed they were to be on that end of the three stage procedure than where we were.  Now, I don't know what I feel, definitely not blessed in this regard. 

Sam is impatient he just wants to go and get his test and operation over and done with so he can go back to Kindy and come back and see Jack. In his words:

I'm just gonna say, Hi Dr Gooi, I'm here to have my test heart. And then I will go to hopstibal and then I will come home and say bye.  Dr Gooi is funny.  And I will have to wear a maks (mask) and I will go to sleep'

Even after the Fontan, Sam is not fixed.  His heart cannot be fixed with human hands.  HLHS is not a curable condition.  They just try to make the heart last as long as they can.  Some hearts respond really well to sugery, others do not.  We don't even want to go there yet.

This blog can be pretty messed up some times, but that's because my life is pretty messed up in many regards.  I am not trying to present some image of a woman who's got it all together, because I'm pretty much as far from that as you can get. But...I do know that God cares for me and my family and I can speak of his miracles and His love for us, even in our disrepair. And when He gives His word he never goes back on it. 

God and Family

 

Family and God

I just can't imagine how our lives would look if those two were ever separated. I'm not even going to try.

An Unexpected Gift

Today brought much excitement and joy in our home.  Our church family at Reach Christian Church, Longreach blessed us beyond what we could ever ask for or imagine. 

Firstly Sam was given a wonderful gift of a truck and trailer from one of the men at our church.  To say was excited would be an understatement.  He has decided that the truck will be Jack's too and they will share.  Thank you so much for bringing a smile to Sam, you know who you are.

We were also given a gift as a family of an iPad mini! Wow, wow, double wow.  It is something I never dreamed would happen.  For a while now, we had been wanting to get one, but with us being on one wage for the longest time, luxuries like this were well and truly out of our reach.  It will be such a blessing to us, especially while Sam is in hospital.  When we opened the gift together I could not breathe, I was just so blown away, that these people that we have come to know over the last six months would do such a thing of love.  And we are so humbled that God knew the desires of our heart and would provide such a thing for us.

In addition to this the church has also given us a portion of money to help us in the time when we are going to be away.  This made me cry happy tears.  This will mean that we can pay rent for another week, so Don and Jack can come down when Sam has his surgery.  With Don being at his new place of employment for only six months means that he has not had the opportunity to accrue much leave and we were concerned that we were not going to be able to pay rent and bills.  This gift will help us in this regard and shows us that God has not forgotten about all of the practical parts of Sam's surgery and all that goes with it. For the last few weeks these things had been weighing heavy on my heart, being the budgeter in our family.  And so I have been praying and waiting, waiting and praying.  In the last few weeks we have also been given other gifts in this regard, all helping to make things easier. 

And because I am honest I will also add this...

It also made me cry humble tears because in the last few months with the kids being sick and me being so focused on Sam's upcoming surgery, making Longreach our home and making sure our family is on track, I feel like I have not had time to make good friends here in Longreach.  Everything has been so busy and in a way I have also closed myself off trying to sort out my own heart and head.  So to be thought of in this way, and given such a gift brought first a sense of shame in my own behaviour and then thankfulness for other people's love. Thank you Reach Christian Church, we love you.

In addition to this we have seen Sam bounce back from his illness this week with such vigour.  After our trip back to Barcaldine this week for the dentist, all should be done in readiness for us to be on our way.

And now, one week before we are due to fly out, I have a renewed sense of God behind us in love and marching before us in victory.

If God is for us, then who can ever stop us.

All About the Fontan

The Fontan surgery that Sam needs is complicated and hard to explain in any detail, so I have found the information for you so you may read what it entails.

Fontan Operation

This involves connecting the veins from the main circulation (SVC & IVC) directly to the pulmonary arteries. Blue blood is thus directed into the lungs rather than to the left atrium. A patch is placed to prevent blood passing from the RA to the LA - though sometimes a small hole (a 'Fenestration') is deliberately left.

Both this description of surgery and the graphics below are from the RCH website.

This is what Sam's Heart looked like at birth before his first surgery in comparison to a normal heart:

This is what Sam's Heart looks like now (after his second surgery)

This is what Sam's heart will be like post Fontan:

To read about the procedures involved in the Fontan completion please read here for a highly details and informative explanation.

For a medical outlook on what HLHS means for Sam both now and in the years to come, I found this description most useful and easy to understand:

As he grows: your child’s long-term outlook

Babies with HLHS will need three surgeries in their first few years of life; and children will need follow-up care throughout their lives to ensure that their hearts continue to function adequately. They are never entirely cured of their cardiac defect, and will probably need to take heart medications.
The most positive outcome is that a child can undergo these surgeries and not have any symptoms going forward. On the other hand, there are children whose hearts struggle with their single ventricle.
Children’s cardiologists will follow your child’s recovery and progress, and will provide further treatment, if needed. There is a risk of complications, including arrhythmias, heart failure and blood clots. And the potential does exist for needing a heart transplant in early or mid-adulthood.
Thanks to sophisticated diagnoses and treatment innovations, babies with HLHS who would not have survived a mere 20 years ago now have a good chance for a full life. And the medical science on HLHS and other congenital heart defects continues to evolve and improve. (Source)

All of this information is good to have.  It helps me to understand what Sam needs to go through and how I can help him and advocate on his behalf.  But it is the promise which God gave me that I hold most dear.  Because there are so many variables in medicine, nothing is certain, each case is different, each child is different.  And I know that God's promise for Sam to have life in abundance is unchanging and rock solid.

 Information is important, faith is essential.

Doctors Update

Sam's fevers have gone.

He is brighter this afternoon.

And so am I after a little nap.

His GP has diagnosed that in addition to his school sore he also has a throat infection.  Praise God it's not something worse!

Sam will stay on low dose antibiotics up until he has his cardiac catheter.

I have called the hospital to let them know and they are going to get back to me early next week to make sure that plan is OK. 

I pray that is it.

There is nothing else I can do.

It is all in God's hands thankfully.

Outside I am calm, inside I feel like I am running a marathon.

Outside I am quiet and thoughtful, inside I am imploding.

You know that feeling of when you close your eyes lay down and it feels like the house is shaking.

Time to be still and know that He is God.