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. 

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. 

 



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.

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.

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.

 

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.

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.