Sunday, April 28, 2013

Living Longreach Style

Sam fossicks for rocks in the dry creek bed.
Sam's x-ray was clear. After it being sent through to his cardiologost we were able to drop back Sam's Lasix to only one dose a day, which means no more wet beds at night time.  We are all happy about this, none more so than Sam. It is so amazing to watch him go and go and go. This weekend we went rock collecting and instead of him being worn out and needing to rest, because of being out of breath, we had to rest because his legs were sore from walking and standing.  This is new to us, as he was always tired the other way first  Now he just needs to build up strength in his legs.
Jack helps open the gates on our adventures.

We are making the most of our last few weekends in Longreach, enjoying the mild 30C days and doing things that Toowoomba won't offer so freely. We have so much to be thankful for.

Our move to Toowoomba is falling into place like clockwork. Now we just have to find the right place to live. We have applied a few times and missed out. The right place must be coming,  we just need to be patient. We have trusted in God for things much more important than this.

Thursday, April 25, 2013

ANZAC DAY-One month post Fontan

Today we remember the men and women who so valiantly have served and are serving our country in the military, protecting all that we have and hold dear and we are also celebrating that it has been a month to the day since Sam had his Fontan surgery.

We savoured the ANZAC parade in Longreach this morning, our first and last in this outback town.  A town that is proud of it's heritage and the resilience of it's people. The harsh climate and isolation build a strong sense of community.  Today Jack marched with his school in the parade, while the rest of us cheered them on.  Sam cheering the loudest of all, the excitement was intense for him. We could hear the comments of others remarking at his enthusiasm.

 And then we all gathered in Edkins Park for the memorial service, the air filled with a cacophony of Corella's screeching, happy jacks chattering, dogs baking and the road trains on the highway crawling past. Somehow we heard most of the words, prayers, songs and sentiment. It will be a day we remember for a long time to come.

Jack is in the centre, waving with his hand over his face.

And now as the Summer weather has breathed it's last, the vast strong winds of Winter have arrived
today, bringing with it the sense of a change in season. And our season here in Longreach is drawing to a close.  Our house here in Longreach has been re-let, meaning we are now free to move as a family.  At this stage we are looking at leaving Longreach on the 17th May.  We are in the midst of finding a home to rent in Longreach and have many people helping us with that. 

Sam has had his x-ray and we are waiting to hear the results to make sure there are no fluid problems near his lungs from after his surgery.  We are looking forward to stopping the Lasix for him when the doctor's say. Night times are no longer dry for Sam and he finds this quite upsetting. He does not like mess and is a big boy who has not worn nappies for years. Otherwise he is doing very well.  His little hands and feet are warm and pink.  His lips are pink most of the time and he is now walking/running further than he ever has before.

I am so thankful that we live in Australia, where health care is excellent and much is provided for us.  I know that so many have fought and died to make this country what it is today. When I saw Sam waving today and cheering at the parade, it brought tears to my eyes to know that because of the brave ones who have fallen, Sam was given the freedom to live. God bless our service men and women.

Friday, April 19, 2013

A Bittersweet Change

We are home in Longreach!  How wonderful it was to be reunited in our family home again after such a long time away.

Sam is still powering away in his recovery.  His scars are healing really well and he does not seem to have any side affects in regard to fluid retention. He will have an x-ray in Longreach in the next week to rule this out.

I have been offline mostly for the last week, due to some big news that has come very suddenly, news I was unable to share until today.

On Monday Don received an offer of work back at Boeing at Oakey, an offer which we have accepted.  They were very keen to have him back on the team and so we are relocating back to the Toowoomba area.  At first we were hesitant, we love our community in Longreach, the church, the school, the Kindy and everyone in them. However the lure of being closer to family and old friends, medical care for Sam and the superb offer from Boeing, brought us to pray, consider and accept the offer. Boeing is even paying for the relocation of all of our belongings and transport costs as well as providing accommodation for up to a month for Don, if he needs to come down before us.

Don begins his new position with the Blackhawk team at Oakey on the 20th May, meaning we have a month left here at Longreach.  In that time we need to find a replacement to fulfil the lease we have here on the house in Longreach.  Please pray that a suitable tenant is found so we may move together as a family. If not, I will have to remain here with the boys until a tenant is found.

I am looking for someone to take over my Avon business here in Longreach if anyone is keen, let me know.  I have about 40 customers who look forward to receiving the service.

Obviously we have been caught off guard with this move.  We were looking to stay in Longreach for quite some time, but we cannot ignore the doors that have been opened for us in the last week.  It is hard to leave Don's work here and all of the friends who have been so kind and supportive to us, especially over the last month during Sam's surgery.  To say no would be foolish.  We have literally seen God open his hand this week and pour out blessing over our family, in such a refreshing contrast to what we have just endured. 

So we hope that you will celebrate with us, though the news be bittersweet. We are excited and look forward to all that God has in store for us in the future to come.

Thursday, April 11, 2013

Given the All Clear

We presented for Sam's x-ray this morning at 9am and were taken straight in to have it.  Five minutes later we were back in the ward to get the results and because the doctors were on their rounds we saw them right at that moment.  The x-ray was great with no complications.  Sam has the suture removed from his final drain wound and we were on our way.  Good-bye Mater Hospital! Dr Anderson one of Sam's doctors is just amazed at his recovery.

'He is just remarkable isn't he?', he grinned as Sam smiled and laughed and ran down the hall to see him.  I think what really stumps everyone the most is just the abundance of Sam's joy and his complete inability to hold a grudge even five minutes after they have to hurt him in some way.

We are now at the Sunshine Coast with my family, spending quality time with Granny and Grandad for a week or so before we head back to Longreach. Sam will have an x-ray back in Longreach in a fortnight's time and then we will not need to head back to Brisbane for review until the 28th June.

In the next week, I need to come to term with fact that we are on the other side of this surgery that Sam loves to eat, and what our life will look like now that this weight has been lifted. It has not yet been three weeks since his surgery and I still can't wipe the smile from my face.

To say that we have felt so loved by you all would be a complete understatement.  We have received words of love, cards and gifts from the world over.  It is going to take me a year to thank you all personally but I have kept all of the envelopes with return addresses to do just that.

I think Sam summed it up all quite well in his prayers last night.

'Fank you Desus, for making me better. Fank you for my family and my good fwiends. I wove you.'

Wednesday, April 10, 2013

Time to Celebrate

Today we have rejoiced in a day of relaxation and celebration.  Sam's post surgery dream to visit the museum was fulfilled today with enthusiasm overflowing. We literally had to run to keep up with him at times.  And he has not complained of pain once since leaving the hospital. Today we have enjoyed long walks, taken in the sights, hunted for water dragons, indulged in ice-cream  and once again enjoyed our comfy beds. Sam's first words this morning on waking were, 'I yove deese beds they are so comforble.' There have been no tears today, no pain; only giggles and joy and cuddles both received and given. Truly today has been a celebration of all that is good in life.

Breakfast at our motel was delight to us all this morning. The boys loved being able to choose from such a huge selection.

I will never in my life forget the expression on Sam's face when he saw this dinosuar skeleton, not the roaring noise he made to accompany it. It was priceless after all he has been through.
To fierce dinosaurs!

Off to the hospital once again in the morning for an x-ray the final OK to be able to head home. I have to believe that all is well, after I have seen Sam in great health today.

Tuesday, April 9, 2013

Day 15-Post Fontan- Victory!

Yesterday we had to make a decision regarding our stay at Ronald McDonald house, as our time booked there had come to an end.  In faith we booked a night at a motel and in the morning Don and Jack packed up the car. We had hope in our hearts that today would be the day we left hospital, especially after seeing God move so mightily on our behalf yesterday.

As the doctors did their rounds they were guarded and suggested that we should spend a little longer in hospital, but if the x-ray was good and there was minimal fluid retained in his right pleural cavity, Sam may come back to accommodation. At 11am we finally were sent down to x-ray. We went knowing that God had it all in hand, no matter the outcome. Half and hour later the head nurse came to see us to tell us that she was sending us out. Sam's x-ray was completely clear!  In fact they needed our bed space and were very happy for us to be discharged!

Do you remember when Sam's drains continued to drain and I felt moved that they should review it?  They did that without me even getting to ask and now this -a total lack of any fluid build up in 24 hours after they rmoved the drain.  Sam has left hospital on Aspirin, Enalapril and Lasix for the time being. The first two medications are long term,  with the Lasix to be eventually stopped. Sam will go back to the hospital on Thursday for a follow up x-ray and then we will be free to go home.

We also had visitors as we were checking out today. A beautiful family whose lives have been touched by HLHS, and they are all the way from Denmark.  During our hospital stay I have been blessed by meeting in person, two amazing friends from Facebook whom we had never met before.  Thank you for taking the time to visit Ally and Tom, even with your jet lag. To look upon your faces after following your journey was so special to me. Bless your beautiful family.

So here we are tonight all together, in a beautiful motel, enjoying relaxing and being a family again.  We spent the afternoon sleeping in our comfy beds and snuggling up together. It feels like a dream to me, a dream that I never want to wake up from.  To know that we are on the 'other side' of the Fontan surgery, will take some time to sink in I believe. But I can tell you that already we are seeing the improvements in Sam's well being. His hands and feet are warm and pink, and tonight I watched him eat and entire bowl of Spaghetti Napoletana.  An entire bowl! With every slurpy mouthful I sent God thanks for the joy that it brings me to see him enjoy food.

Thank you God for this day of victory.

Monday, April 8, 2013

Day 14-Post Fontan, Promises Kept

Today was just amazing from start to finish. Amazing in that so many things happened, unexpected blessings from God who knows my own heart.

On the way to see Sam in the cool early morning Jack and I lifted our eyes to see a rainbow arching over the hospital.  It reminded us of God's promise to Sam and us. 'Sam will have life in abundance, he will tell the nations of his healing.' On arriving at the hospital we were met with Sam's surgeon who had reviewed Sam's case and had decided it was time for the drain to be removed.

Do you remember yesterday, when I asked you to pray about the drain? God made a way.

Even though Sam was afraid, he knew that the drain had to come out. He wants to go home too. So they gave him Medazolam and we waited for it to take effect.  When it did I carried him to the treatment room while he cried out in protest. I managed to calm him for a few moments on the table before they started. That in itself was miraculous. I held Sam's hands at either side of his head whispering words of comfort into his ear. Two nurses held down his legs and the surgeon went to work removing the tapes, the stitches and the drain, as well as the dressing over his chest wound.

Stop hurting me! Don't let them hurt me! Raaaaaa! Raaaaa! Over and over and over.

All the while, Sam held fast not moving his legs or his body, keeping still though in pain. Such bravery I have never seen. He is my brave lion, the courage of ten thousand and the roar of the king of beasts.

As I held Sam, God reminded me of his other words to us. 'Things never happen the same way twice dear one.  If you were any braver, you would be a lion/lioness.'

Afterward, as he whimpered and thanked his nurses and the surgeon and cuddled into my chest while I carried him back to his bed, still unable to walk because of the effects of the Medaz. So now Sam is drain and wire free, his little body is his own again.

A chest x-ray followed and another will occur tomorrow before we are released.  There needs to be no accumulation of fluid. And then by God's amazing grace we may be discharged.

We have also made some amazing new friends in hospital, some of which I will be sad to leave.  Such brave families; brimming with such tremendous kindness and compassion.

Bittersweet is how I would describe today. Somehow the hope of the end of our hospital stay buoyed us for the procedures that needed to take place. I know that we are all going to leave hospital with scars, some visible, some hidden. Not one of us has escaped this battle unscathed. But I can tell you that we have fought hard.  We have run the race and we will succeed.  There is new life waiting for us on the other side of this. 

Sunday, April 7, 2013

Day 13-Post Fontan

And yes I did miss a day on the blog.

Yesterday we waited with bated breath to see Sam's drainage decrease, only to see it increase.  Which does not mean a whole lot except that we are still going to be here more days.  Every 24 hours we watch to see the fluid from his right pleural cavity be less, and in the last 24 hours we have watched our chance of getting out of hospital vanish before our eyes.

One word, frustration.

Sam medication has decreased much over the last week also.  He is now only on Enalapril, Aspirin, Lasix, Spironolactone, and Paracetamol.  In essence he is back to himself in most ways despite the fact that he still has a drainage tube hanging from his midsection. Each day it is in brings a chance of complications and infection and with him moving about a very real chance it could come lose and pull out like we have seen on other children on the ward.

To break up a very long day yesterday we had a visit from a friends that we have not seen in many years.
Maureen and Clair came to visit yesterday. We really needed their smiling faces yesterday afternoon.

We really need a break through in relation to this drain.  Sam's recovery to date has been excellent and I don't want to see anything jeopardise that. 
We miss the sun on our skin and the fresh air.  It will be two weeks tomorrow since Sam's surgery.  I could understand being here if there were concerns with his health.  But since it is this little drain that is keeping us here I am asking that you pray with me for it to dry up today.  Dry up, and come out tomorrow so we can go back to being a 'normal' family for a while.  That we can spend some fun time together, that Sam may get on with his recovery outside of the hospital.  That we can eat something other than takeaway.  That maybe Don and I can have some much needed moments together also. 


Friday, April 5, 2013

Day 11-Post Fontan

Today was a very long and drawn out day of waiting. We were blessed to have visitors though. I am so thankful to everyone who has made the effort to try and see us, even if we have had to say no at times due to not so great days.
We are all growing very weary right now. In essence we have been in hospital for three weeks if we include the catheter procedure. Each day we watch Sam's drain as it slowly dwindles by only 10 ml a day.  Each day decreasing but not enough to be removed as yet and then the realisation that once again we will be staying another day.

But these are not problems. I refuse to complain when I see so may families struggling and fighting for the lives of their children.  Seeing families that have been in hospital six months with little improvement. our family is blessed and Sam's recovery has been remarkable. We are praying that his drainage does stop soon though, to avoid any sort of complications.

We are going to need a whole lot of rest and relaxation when we finally get out of here, but we are leaving with our son healthy, walking and talking a life of victory.  Praise God for his faithfulness.

We are on autopilot at the moment and each day runs into the next. Each morning I wake and God gives me His peace, a new infusion of strength and enough joy to spill over to those around us. 

Sam captures the hearts of those around us with his vibrant personality and his ability to overcome. His pain is not in vain, we continue on to step up to the next level, a life that offers new hope, new promises, new possibilities. 

None of our lives are easy. But it's in the hard times we learn all about who we really are.  Because when under pressure and pain all pretenses are stripped away revealing out true heart. I am no longer afraid of the process, though painful,  it keeps me real. Some people tell me that I feel things too deeply. I count that as a blessing.  It is through taking the emotions in and dealing with them in prayer that I am who I am.  I am not afraid of how I feel.  What I am afraid of is becoming numb to what we endure, to what I see, to those we meet.  I believe it would be worse to let our love grow cold and feel no compassion. Sometimes love is painful, but is is worth every tear.

Thursday, April 4, 2013

Day 10-Post Fontan

Waiting, waiting, waiting for the drains to slow.
Today one of the two remaining drains was removed from the left pleural area, along with more blood work and the removal of many little adhesives that Sam will not let us normally remove.  This meant more Medazolam, this time I asked for it orally, and it was topped up half way through the procedures as it began to wear off.  Medaz does not make you sleep, but makes you feel disorientated and is meant to have an amnesiac effect, so that the patient does not remember as much.  This time I asked for the Medaz to be given orally in his bed, and then when it began to take affect, I carried him to the treatment room.  Sam still cries and screams through the procedures but seems to settle quickly afterwards.  He also was awake all afternoon, when usually Medaz makes him sleep all afternoon.

Sam is very pale and tired after his drain removal, but otherwise well.

Sam also had a chest x-ray this afternoon to ensure that the drain removal went well.  His blood work also came back all in order.

So what this means is that now we are essentially waiting for the last drain to slow down so it can be removed as well.  Ideally we would love to go home on the weekend, but we know we have been blessed with Sam's recovery and just want to keep everything going smoothly in the right direction.  If that means that we spend more time in hospital, then so be it.

Below are just some of the beautiful cards and messages Sam has received, we are running out of wall space to display them. Thank you :)

In the meantime we make the most of our days talking with and helping others who are having a rough time, because we know what it is like.  And we have experienced that same love and care from others who have walked this road before us.

Wednesday, April 3, 2013

Day Nine-Post Fontan

Today was a pain free day for Sam the first in quite a while.  We were spared blood tests and an echo was our only intervention besides all of the medications and obs.

Walks all over the ward, feeding the fish, having visitors and  receiving unexpected gifts.
Feeding Ruby, the Siamese fighting fish.
These quilts are made and donated by a very special lady to Heartkids for children like Sam. We chose this one with lions on it, to remind Sam of his courage and for Jesus who looks after Him.
This dinosaur balloon was sent today by our friends Demi and Piper in Longreach and made Sam smile no end.
Sam keeps asking to go back to the motel, and knows we are just waiting for his drains to slow down and be removed. He had a big talk with one of his doctors during the echo asking about the valves in his heart and he describes them as doors that let the blood in and then out another door. The doctors are also waiting for Sam's weight to return to his admission weight (making sure that fluid levels are normal), but since his appetite has returned we have found he is eating twice the amount he would usually eat and so I doubt that that goal will be reached. 

Everyone who walks into Sam's hospital space remarks at how wonderful it is thanks to all of your beautiful cards and messages.  His walls are overflowing with colour and messages of love and encouragement.  You kindness has made our little corner of the hospital a bright and cheerful place to live, where other patients, nurses and doctors also like to visit.  And because we have received so many amazing gifts Sam has also been bringing cheer to other kids who have nothing to brighten their bedside.

It still has not sunk in that we are on this side of the Fontan surgery. I think at this stage Don and I are living on adrenalin.  All I know is that my heart is overflowing with a gratitude that will never end.  I can see a light an the end of this tunnel and it is beckoning and bright.  That light is our future and all that we have to look forward to.  So with each new day we step forward, trusting an believing that God has it all in hand.

Tuesday, April 2, 2013

Day Eight -Post Fontan

Today has seen remarkable improvement for Sam in his mobility and we have seen him become himself again in many ways.  He has been walking all around the ward visiting the playroom, the fish, the vending machine and many of the other little patients.  Sam has even been delivering presents to other kids who are having rough days. 

Today there were many kids in the playroom so we requested a visit from the Captain Starlight team and they brought so much joy to the kids on the ward.  They played games, painted faces, and generally had a great time joking around.
 This lady always pulls faces in photos.  Sam was face painted like a dinosaur so she was growling here.

At lunch time Sam had to have more blood drawn and Miranda the occupational therapist whom we have been working with, came beforehand to play out having a blood test with her little puppet Sam.  The blood test is still a very hard time for Sam but we have noticed an improvement in his pain and mood afterward when there is a game to look forward to. 

We also saw Kaden today one of Sam's heart friends who came to visit with his mum Leanne.  It has been years since we have seen them.  It was really good to see some familiar faces and see how well Kaden looks after his own Fontan journey.

Sam is no longer being continually monitored and today he stopped his MS Contin for pain, meaning that he remains only on paracetamol.  If he requires further pain relief Oxycodone is available at request.

The two drains remain but are slowing day by day.  And the physio team are only visiting once every couple of days now to check in with us, which means they are very pleased with his level of mobility.

To be at this point of recovery so soon after surgery is like a dream  for us and we know that there is more than human hands at work to make it so.

Monday, April 1, 2013

One Week-Post Fontan

We have had a really relaxed day at hospital today. Can you believe this little boy only had open heart surgery a week ago today?  Look at him! Praise God with me.

Sam has been wanting to get up and walk around everywhere.  His pain seems to be under control and he is back to being his happy little self most of the time, despite the ugly drains hanging from his chest. 

Today Don, Sam and I had breakfast together in the family room, and played in the playroom, he is even getting up and down every time to go to the toilet, no more bed pans for this little black duck.

Unfortunately the cannula that was put in yesterday had to be removed today as it would not flush. So he is now cannula free, which is good because his arms are free and bad because if he needs it later they will have to put another one it. 

He does not need blood tests today because everything is within range and his bowels seemed to have settled down a lot now they have changed to Osmolax.  The drains are slowing gradually and at this point, we are only waiting for those drains to dwindle down to very little, before they will be removed and we can go home.

He also does not need his oxygen anymore, which means Sam can move around freely and he is doing just that. His is still saturating 97% on room air.  We are now trying to keep up to him at times.  He thinks that is just hilarious. 

We are still in close obs and just waiting for a bed in the general ward. Please pray that happens soon.  At the moment I put Sam to sleep wearing his headphones, so that most of the noise is dulled.

Please continue to pray that any post operative infection is avoided and that Sam will continue to surge on in his recovery.  In the last few days we have noticed a marked increase in his appetite  and his colour is amazing. 

Sam's steady recovery is due to his fighting spirit, caring loving family and friends, vigilant and compassionate hospital staff and an amazingly faithful God.

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