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.

More About Day Four

Sam had a bit of a rough afternoon with an episode of extreme pain with cramping in his bowels. After the 20 minute ordeal, he was just exhausted and has felt and looked washed out all afternoon. 

The drainage from his chest drains has also picked up today, which means that he will probably still have to keep them both tomorrow, instead of removing one as planned.

Don and I are both really tired.  Between caring for both boys we are always on the go, with little rest at night for either of us.  Sam's demands are high between trying to keep him well fed, get him in an out of bed with all of his attached wires and tubes, to and from the toilet, using bed pans, changing his soiled sheets and clothes, playing with him and keeping up to date with doctors and all of the other specialists can all be very draining. In between we have to do other things like washing, and letting others know what is happening.

I am praying that in the days to come we will move to the general ward and things will be a little more relaxed. I am also praying that his drains do their job and begin to slow down, so they can be removed.

There is a skeleton staff here at the moment and the streets around the hospital are eerily quiet due to the Easter holidays. Finding food today for our meals was somewhat of a challenge.

The blood test that was done this morning came back low in sodium and needed to be repeated.  praise God the cannula once again delivered the blood after much persistance and patience on behalf of Doctor Kim. God bless that woman.  The results came back the same, which means they will keep an eye on it over the next few days.  Please pray that the cannula continues to behave so Sam can avoid haivng to give blood venously.

In addition to all of this I am afraid that Jack has become quite the Nintendo DS addict due to long hours spent at the hospital, so Don is hoping that if Sam is Ok tomorrow he can take Jack to the museum for a break from our long hospital days/nights.

So this is all of what is swimming around at the moment.  As I type to you, I am giving it all over to God who has the strength to deal with it all.  I certainly do not.

Day Four-Post Fontan

Sam is recovering like a star!

 

 

The day started off with him finally going to the toilet (BM) after surgery. So important for his health and comfort, especially with the other pressure from fluid still draining from his chest.

 

Uncle Brendan and Aunty Jess are visiting today and he was so happy to see them. It has brought a real ray for sunshine seeing family today, especially when Sam is improving som much every day.  They bought him a beautiful card and subway cookies and Sam walked all of the way to the play room with such bravery to get his cookie reward.  He sat up in the playroom for about 20 minutes, almost unassisted and ate subway cookies.  While he was there I gave him a little wash to freshen up and we were blessed with more of his little grins.

 

Can you believe this is all only 4 days after his open heart surgery?

 

His oxygen is being weaned and he is now only on .5 litre.  At this stage another of his drains will be coming out tomorrow and he is now on oral MS Contin for pain, weaning off of the stronger IV medication.

 

He also had blood taken today and they were able to draw that from his cannula that was still in from surgery.  This definitely made my morning.  I am just so thankful that is is still working.

 

He is now eating well and with that comes more energy and greater enthusiasm.

 

Truly we have been given the best easter gift yet.

 

I know that the doctors and nurses are amazing at their job, but it is God's hand and Sam's determination that are steering his recovery.  I am just astounded each day with his progress and give thanks.   

 

Day Three-Post Fontan

Last night we had a relatively trouble free night, until the early morning.  One of Sam's pleural drain collection bulbs became dislodged and there was concern that air may have entered his body through the tubes.  Thankfully the tubes have a one way valve that worked effectively and after a chest x-ray, he was cleared of all concern.

Because of a very early chest x-ray at 4am it was a very long morning of physio.  It is especially bad for him first thing in the morning and is really painful. As the day progressed, he was able to to walk very slowly, trailing with drains and wires without continually crying out in pain.  We all know that he needs to do the physio to get better but trying to explain to Sam that he needs to move through the pain, is very difficult.  Today after his longest walk while he was perspiring with pain and his legs were shaking, he begged me to carry him, and I had to tell him that I couldn't but I would help him walk. Tough times for a Mum's heart. Don has been here with me all day today as well as Jack was visiting with family. The walking needs to increase each day while the pain medications decrease, so please pray that he will be spared the sharp stabbing pains from the drains.

Sam's appetite returned somewhat today and cheese sticks, baked beans and part of a chicken sandwich were his choices.  This all means he will have more energy to recover and heal.

There are some tremendously tough cases with us right now in the close observation room and the level of anxiety in some of the patients is very high, which affects us all. Rest can also be elusive. He has had a super nurse today which has made all of this much more bearable. We are praying that we will soon be in a regular ward room so we can sleep beside Sam and he will get more rest.

We have had some visitors, though Sam has not been very responsive to them we have appreciated them so much.  In the next few days we look forward to seeing more of our little boy's spunky personality return.

This afternoon, Sam gave me the best reward I could have ever wanted for Easter...

His happy little smile.

Happy Easter friends.  I can tell you that being here this Easter brings great clarity to what Jesus has done for us all. It's simple really, where He is there is life and He paid the price so we could have it. Here in hospital where we see so many little lives hanging in the balance, the message has never been more clear... more simple...so beautiful.

Day Two Post Fontan-Our Little Warrior

We have been blessed tremendously today and it has been a huge day for all of us, especially Sam. Sam walked to the toilet first thing this morning and has in fact been up and about several times today.  He has also been doing physio and breathing exercises. 
The area around his right lung is draining the most fluid and sometimes causes him so much pain, that it breaks through his pain medication. After consultation with the pain team today his pain relief has been changed from morphine to Fentanyl and we have seen a phenomenal improvement in his pain
management, mental state and his general well being.  His is also on a line of pain relief that is given a top up before he had to do anything too strenuous, just by pressing a button.

He has been awake more than asleep today and is much calmer in himself today even engaging the nurses in conversation at times.  What I wouldn't give right now to see his cheeky smile once again though.

Sam is also on some fluid restriction but he is doing OK with that.  He has not wanted to eat much at all yet.  We are hoping that tomorrow that may improve.

Today at lunch time, he was sedated with Medaz and his pacing wires and sternum drain were removed.  While that was happening I also asked
the nurses to remove any excess tapes and his
ng tube, in an effort to spare him more than he needs to go through.  So now Sam just has his two pleural drains remaining, the right much more troublesome than the left.These two drains will likely remain for some time. His chest x-rays and echo look great and his heart function is still really good. 


We have checked into Ronald McDonald House this afternoon for the next week and we will see what happens after that.  They only had a week available at this stage.

Each day is very hard, on all of us.  But I cannot tell you how humbled and thankful I am that Sam's surgery and recovery to date have been excellent.  A couple of times now when doctors thought there may have been a problem, it just evaporates and his body changes response.  To see him soldier on with his physio today, despite the pain and to actually ask to get out of his bed, made me more than proud. I can't find the word that describes how it made me feel.  I know that he is being enabled by supernatural strength.  Today God reminded me why he is called Sam.

Sam for Samuel, because he will always be mine.

Sam for Samson, because he will have strength and determination that comes from me.

God's promises never fall short.

And do you know what? It sucks that Sam has to endure such things and  that our family has to walk this road, but We will not dwell in pity or negativity.  We are blessed beyond belief.  We know what it is to walk a hard road, so when times are not good or we think life is tough, we look back and realise how amazing each day we are given is.  Each moment is precious, and we give thanks even for the tough ones.

Day One Post Fontan

Sam's Fontan surgery was a success. Praise God!

Five hours after he went in, we received the call that we were able to see him in ICU in an hour.  Dr Tom Karl, told us that all went as planned and that there were no surprises.

At about 6.30pm we were first able to see Sam.  We had prepared Jack for how Sam would look.  I am so moved by Jack's compassion for his brother.  It was evident that he feels deeply about all that is happening to Sam. Jack sat all day with us at hospital and never once complained or misbehaved. 

Sam needed a pacemaker switched on for a little while after his surgery to help with the rhythm of his heart until it found it's own way.  He was extubated (breathing tube removed) at 8pm which was nice and early after surgery and he had no problems breathing by himself.  His chest is draining well and morphine and a few other drugs are keeping him comfortable.

I stayed with him through the night, as he woke up quickly and has not slept much at all due to all of the noise in ICU.  He is very thirsty and hungry and was allowed some fluids (very small amounts) at 11pm, but is only having something to eat at breakfast. Last night he had two episodes with pain and this caused him some distress and they had to give him bolus morphine.  It is his chest drains that are causing him pain. After he had the episodes of crying and pain he dumped big amounts of fluid from his drains.  Please pray that they will be able to keep his pain under control. For all of those who like details Sam's Oxygen sats are at 97% and his fingers and toes are warm and the pinkest I have ever seen them.  I can't stop touching them.

In his groggy state, he has been telling me jokes and telling me stories to keep both his nurse and I entertained through the night. I managed to get an hour or so sleep in the recliner near his bed.  Don and I have just swapped for a few hours so I can shower and have a rest before I go back for doctors rounds at 8am.

The doctors are really impressed with Sam's progress and it is likely that we will go to the Close Observation room on the ward by the afternoon.

I hope all of this makes sense.  I am tired but encouraged and amazed.  The sun is rising now.  And with the sun comes more of God's mercy and a truckload of his joy, to help us endure the day to come.

Surgery Day

This morning Sam fasted from 5.30am, in preparation for him to have the Fontan surgery.

We presented to the Day Unit at the Mater hospital at 8am and prepared for a long wait.  We were unsure as to whether Sam would indeed have surgery today, as they were making a space for him and it depended on many factors including bed space.  Like clockwork we watched each of the pieces fall into place.  Paperwork done, observations done, anesthetists and doctors came to chat. They needed more blood from him, but agreed to do it while he was asleep in surgery.  A volunteer even spent all morning with the kids in the waiting room and played with them to keep them occupied before surgery.

At 11.15 we were taken to the preparation room and did the final checks ready for surgery.

At 11.30 Sam and I were escorted to the theater after he said goodbye to Daddy and Jack.  He wanted them to come too, but they could not.

He was happy to see all of the doctors and even happy to sit in on the bed.  he thought the bubble gum smelling gas mask was funny and played with it, until we had to keep it on.  Then he didn't like it and fought hard to get it off.  In the end we had to lightly restrain his arms and legs while tears ran from the corners of his eyes, while my own heart felt like it fell out and the ground swallowed it. 

I kissed his wet little cheek as he drifted off to dream land, let go of his hand and was escorted back to Don and Jack.

The surgery will take 3-4 hours.  We will then be able to go and see him in ICU where he will be at least the next few days.

Even here in this place we have peace.  Peace in the knowledge that God had this day planned down to the second.  Not one detail escapes his notice.  So even though I feel broken that Sam has to endure such a thing, I have tremendous hope that exceeds and overshadows all fear.  Because when I close my eyes I see things differently.

When I take him into surgery....I close my eyes and see him smiling and playing like never before.

When I kiss his wet little cheek..I close my eyes and see him going to Kindy and school and playing with his friends.

When I see him drift off...I close my eyes and I see him in his own bed while I tuck him in snuggly at home.

Yep, hope is what I have, and in God I will trust to do all of this and more than I can imagine.

Back In Brisbane

We are all together again.  I cannot express in words how wonderful it is to have and hold my family close again.  We have only been apart a week but in hard times it feels like a month. Don and Jack arrived at Buderim this morning at about 5am after dropping Gran home in Bundaberg. Fourteen hours of driving means that we could all drive to Brisbane together this morning.

Sam had his pre-surgery bloods today, which as you know is quite traumatic for him.  Having his Dad and big brother here, helped to give him extra strength.  He also had a chest x-ray. It is amazing to see his sternum wire together in 8 different places in the x-ray.

Sam will fast from 6am tomorrow and we will be over at the hospital again at 6.15am.  They are trying to get him in to surgery tomorrow but it may also be Tuesday.  We just have to wait and see. While he's in surgery and under anaesthetic they will also remove the dressings from his groin where the catheter entry point was and two of the heart rate dots that he refuses to remove. 

And this afternoon we are trying to do as little as possible, just enjoying each other's company.

Can I just say thank you to all of you who are helping us. Sam's heart journey is a whole community affair.  People who pray for us, offer us help, make things for us, help us financially, look after us, love us, visit us, call us, message, people who are just there to talk to, people who show us random kindness and care. We love each one of you and I want you to know that without you our journey would be a very frightening and lonely place. 

Fontan Time

So, we have received the phone call.

Sam is stopping his warfarin as of now and we will be in Brisbane at the Mater hospital for blood tests and x rays tomorrow morning at 10 am.  He will be fasting from 5am Monday and  it is likely that he may go into surgery for his Fontan Monday afternoon. 

It is all very fast and I have called Don, he is leaving Longreach as I type and driving down with Jack and Gran Watson.  Pray that they travel safely.

There is no one to help with accommodation on the weekend at the Mater hospital so we are using some for the money we have been given to book two night at a motel close the hospital until accommodation can be organised early int he week by the hospital.

We were hoping that our break at the Sunshine Coast would be longer but as long as it all goes well, I just want to do what is best for Sam.

So I wonder if I can ask you a question?  I have this idea for Sam to receive cards in hospital. When we are at home our boys love getting the mail and get so excited when it is for them.  So if you could could you please send a card to Sam and maybe Jack too to the following address. Jack often misses out on receiving things, when he too endures much due to Sam's heart condition.  Imagine how the cards would transform his hospital room.  The cards will be brought down and delivered to them by our family.

Send your words of love and promise to:

PO Box 5905
Maroochydore  BC QLD 4558

Thank you for your love and prayers friends.  The next weeks are not going to be easy but we will triumph with God's blessing and Sam will continue to live and have life in abundance.

Day Five

This morning we had hope in our hearts that today was the day that Sam's blood would regulate and that his INR would be in range, bringing to an end the barrage of blood tests that he has endured in the past week. 

Knowing that he only had to have a finger prick he walked by himself to the procedure room (where he always has his blood tests done) and waited to get the test done.  As he strode down the hallway we passed through a large group of doctors doing their morning rounds and as we passed through the throng he pronounced resolutely,

'No more blood tests for me today, Uh uh uh.  I'm having a finger prick and that's all', shaking his head.

Meanwhile I pray under my breath that all will be well.

After the relatively painless test (in comparsion) the INR cam back at 2.2 and Sam literally danced and cheered all of the way back down the hallway through the throng of doctors proclaiming loudly and with great joy,

'My INR is 2.2.  I'm going home!,' as if to say shove that in your pipe and smoke it fellas.

Which elicited a round of laughter and shock at a 4 year old knowing what an INR even is. 

After removing his final cannula (which caused some distress) and being discharged we departed the hospital and drove to the Sunshine Coast, where we will spend the next few days resting and relaxing.

On the way, we received a call from the Cardiology fellow making sure that Sam was entirely sound and clear of any neurological problems in relation to the stroke he had when he was one.

Shortly after we received a call from Dr Alex Gooi, Sam's cardiologist to tell us that Sam's case had been reviewed along with his catheter results and that Sam's heart was at optimal state for him to have the Fontan surgery, which means he is a candidate.  Next week has been mentioned several times and now we are just waiting for a date.  Sam will stop his warfarin 2-3 days before so we should know when surgery will be early next week at the latest. This time Sam will not be heparanised before surgery will will mean much less distress in regard to blood tests pre-surgery.  We are just so thankful for that.

Don and Jack will drive down this weekend from Longreach so please keep them in your prayers and Mum Watson too as she travels home.  We have been so humbled to see God provide money through loving hearts to help us meet the costs we have for all that this journey entails.  I just stand in amazement at His goodness to us. And it brings tears to my eyes when I read your messages and comments thank you for all of your love.

Catheter down, Fontan Surgery to go. 

Time to forget about hospitals for a few days.

Today is a New Day

Sam would like to say:

'Shank you to all of the people at Yongreach and everyone else too.'

Sam is feeling much better this morning.  He slept well through the night and didn't even wake from his slumber when they drew blood twice more from his cannula port.  I am just so thankful, that the port has remained open and free flowing.  His heparin levels are almost right.  The dose should only need adjusting once more and then it should be at the right level.

We miss you Daddy, Jack and Gran. xxx

Day One

Sam has finally just nodded off to sleep.  So far they have drawn one lot of bloods from his cannula.  They are checking to see his if his Heparin levels are at the right dose.  They will continue to do this every four hours until they are in limits, so that means 10.30pm, 2.30am, 6.30am etc.  Please pray that they well settle quickly.

Sam's skin has always been very sensitive. He even reacted to the tegaderm that they used today to keep the angel cream on.  The cannula's hurt and sting a little where they enter the skin and then are cold up his arm So pray that they settle down too please.  I asked the nurses for a dose of paracetamol tonight so that he could go to sleep without the little stabbing pains. 

Once Sam's heparin levels are good, they will have to do little else tomorrow except observe so this is what we are aiming for. 

Wednesday is the day that his cardiac catheter will occur. 

Please pray for Don, he has had a really rough day in more ways than one today.  I won't elaborate, just pray.

I am sleeping (yeah right) beside Sam's bed tonight and will be each night this week. 

Hospitals are such strange places, nobody truly likes them.  We are all here trying to make the best of the circumstance in which we find ourselves.

Sam speaks politely to all of the nurses while he eyes them suspiciously, and then as they are finishing up his obs, he reminds them firmly and with warning in his voice that they will not be using a needle on him. On that note, please pray that the cannula that they are using to draw blood remains working well.  We do not need an encore of today's events.

One step at a time, one prayer at a time, each time closer to a life post Fontan.

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.