Day Six-Post Fontan

Firstly, a big thank you to everyone who responded in some way to my cry for help yesterday. It meant so much to me that you were all there.  Sam bombed out for the remainder of the afternoon and I was able to relax beside him and watch him slumber peacefully, listening to the music that knows how to soothe my soul. Even after the terribly painful ordeal he still pulled together enough strength to do more physio in the afternoon. Don and I both had a great sleep last night, Don at hospital and I at Ronald McDonald House.

This morning was full of joy and excitement.  Easter Sunday celebrated with big smile reminding each other that Jesus is alive and of course loads of chocolate Easter eggs, with deliveries from the 'Easter Bunny', the hospital, Ronald McDonald House and all of our visitors. Truly I have never seen so much chocolate.  After our disaster with the melted easter eggs, we were blessed tenfold in comparison.

This morning Sam joined us in the Family Room at the hospital so we could have a family breakfast and it felt so good to do something 'normal' as a family.  After returning to bed, we had visits from Uncle Gavin and Aunty Ney and Granny and Grandad.  Later in the day Ian and Vi Deed also dropped in to say hi.  In the playroom we were surprised by receiving the first of a plethora of mail for Sam and Jack and spent a time of great excitement, opening gifts and reading cards.

At lunch time, Sam needed more blood tests and as the other cannula also failed, we had to go the treatment room for bloods.  A time of great anxiety and stress for Sam.  He was given Midaz to calm him, even though he remained aware of all that was going on, it does work to decrease his panic.  A new cannula was put in and blood was taken at the same time.  While he was sedated they also removed his other failed cannula.  He then slept solidly for the next two hours.

His bowel is still painful at times but I have been very vigilant with making sure that pain relief is up to scratch before it gets out of control.

Sam's drains have slowed today and he is getting more of his spunky little personality back.  He is being weaned off of oxygen and is down to .2 of a litre. It is much simpler for him to walk now as he is only on oral medication and is free of his monitoring wires.

We were going to be moved onto the general ward this afternoon, and we were all excited and packed up ready to go when we found out that the bed was needed for someone else. So we will stay where we are for now.

Jack has gone back to the Sunshine Coast for a few days to spend it time with Granny and Grandad. Can I just say that if you have sent a card of parcel for Jack or Sam, it did me so much good to see them so excited and full of smiles this morning.  The beautiful pictures and words will adorn our hospital room and remind us that we have so many friends with us.

In the last few days over Easter after all of the terrible pain has been through.  Easter and what Jesus did has never been more clear to me. 

On Friday when Sam was going through excruciating pain, I was reminded of what Jesus went through on the cross and how his mother would have felt.

On Saturday, with the pain, came overwhelming grief and sadness and what Sam was enduring and it all caught up just how tired we all were.

On Sunday, the day that Jesus rose again, we were met with unexplainable peace, joy and excitement.

And through it all we know He walks with us. 

He is there when the nasty procedures are taking place and our hearts are breaking.

He is there when we don't think we can do another hour.

He is there when we laugh and smile in the midst of the long hospital days.


Happy Easter friends. Our love to you all. xx

Day Five-Post Fontan-HELP

Total meltdown day today.

Sam had a terrific morning once again and even went for a big long walk.

At approximately the same time as yesterday as the nurses were trying to draw blood from his cannula, he went back to having intense cramping in his stomach and bowels it truly is excruciating and again it took over 20 minutes for the doctors to be found and for his receive pain medication.  Finally after receiving Fentanyl via IV his pain subsided and he passed into sleep.  His little body was soaked with sweat and exhausted. To watch him cry out like that for so long and so loud is just horrible.  We tried heat packs, and a myriad of other interventions as well.

He is having an x-ray shortly to check that there is not obstructions in his bowel,even though he had been the last two days.

Even after his hour of pain, we then had to sedate him with Medaz to draw blood as his cannula was no longer viable. While he was partially sedated they also removed a particularly nasty stitch where his first drain was removed. The cannula was also removed so at least he now has one hand  free.

I was here alone because Don had finally ventured out to take Jack on an outing. I held it together through he two hours of torment, that even left his nurse traumatised. After that I lost it.

Do you know what? I hate seeing Sam in pain.  At this point I can justify pain in his chest, his tummy where the drains are, aching limbs, sore cannula sites, even bruising from the blood tests.  But the fact that he has the worst pain ever from something totally unrelated like his bowels, even when they are functioning properly, just ticks me off.

Being in close obs meant that not only did I have to endure his pain, but so did the rest of the patients and their families in the ward.

Please just pray, I don't know how I will make it through the afternoon.

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.

More About Day One

Today was a huge day for Sam and all of our family.

Sam made it to the ward in Close Observation tonight, but not until after a very draining day.  This morning he was weaned off of all of his post surgery medications except morphine and saline.  He is still on oxygen just to help him out a little.  His pacing wires are still in, though unused  and of course his three chest drains will remain until they stop draining fluid.

It is difficult to believe that he has moved to the ward only 24 hours after his operation.  There has been a lot of fluid draining from the area around his right lung, so we need to pray that this will rectify and that he will regain complete use of his right lung. 

He has sat up three times today in bed and once placed weight onto his feet by standing on the pysio' legs.  The pain when he moves around those drains is intense.  The fact that his chest has been opened and closed in nothing in comparison to that pain.  I am not sure morphine is the best option for Sam, but I will talk to his pain doctors tomorrow.

He has been through a tremendous amount of intervention today, having lines removed left right and centre, physio, doctor's rounds, hourly observations, medications.  He is feeling very dizzy and somewhat nauseous from the morphine which he needs for the pain.  He asks he to wrap my arms around him and hold him because he feels like he is falling from his bed.  We battled this all afternoon and into the night. He is also having many hallucinations from the morphine which is causing him distress.  He is very thirsty and is allowed to drink some, but is not interested in much food.  He has eaten some minuscule amounts.

Sam also commenced Aspirin today and will no longer be on Warfarin at this stage.  Though collaboration with his doctors we have decided that this is the best course of action for Sam's blood thinning needs.

Heart wise his function is excellent.  Don is staying with him tonight and needs to stay awake as you can't sleep next to your child in close obs. 

The hardest part of today was watching him go through all of the intervention and fighting it every inch of the way.  The nurses tell him what they need to do and he tells them in a loud voice over and over, 'No. I don't want you to, ever!' Over and over again in his groggy, croaky voice. And while he endures having the procedures I hold his little body and head and keep him still while I whisper reassurance into his ear.  Afterward I hold him and hum, whispering prayers into his ear to help him settle back down and drift off to sleep.

Granny and Grandad are here until tomorrow also, which has been wonderful, for all of us, especially Jack. 

We have received some beautiful gifts in the hospital from precious Hearts and the gang at the Longreach Swimming Pool (thank you Jo and family) and also from Longreach Aircraft Maintenace (Thank you Annalisa and Ben). Sam even shared one of his balloons with one of the other kids in ICU who was very sad and did not have any. When Sam is more lucid he will thoroughly enjoy his gifts.

So many inspirational families here.
So much strength birthed by so much heartache.
So many talented and gifted nurses and doctors.
So many many opportunities to praise God for all of the good that he does in our lives and all of the valleys he carries us through.

Please pray Sam continue to improve.

Tomorrow is a new day

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.

Day Four

Waiting, waiting, waiting.

Today began with a ravenous Sam and a round of blood tests.

It is difficult for me to explain to your he trauma of the blood tests for Sam.  The catheter and recovery were a walk in the park for him, in comparison to him having blood tests.

It all begins with the crying and begging when I tell him that they need to do a test.  We only tell him once we are near the procedure room as soon as he sees it he knows why he is there.  I sit on the bed with him between my leg and hold him, while he cries and begs for me not to let them do it.  I try to distract him into looking away, telling him stories, singing to him and telling him that is will be all over quickly and he needs to hold still so it doesn't hurt as much. We have tried using toys, movies and all manner of other tools to help him, to no avail.  When they draw tight the tourniquet, he begins blood curdling screams only stopping to breath in between each one and his little body strains against my hands.  He will not look away, he wants to watch, no matter what I tell or ask him.  After they have finished he continues to scream and then begins to shake even though they have finished, his face bright red, tears squeezing from the corners of his eyes. As they the room I remind him that is is over and whisper in his ear that they are all finished and we can go back to his room.  The answer is no.  I try to offer him things to cheer him up, the answers are no, no and no. For the next half an hour the answer to everything is no.  Because it is now that he has control over what happens to him and he exercises it fully.  Why shouldn't he after not having control over others hurting him? Occupational Therapy came to see Sam this afternoon and introduced him to Buzzy Bee who is going to vibrate on is arms through his blood test and try to help him manage the pain.

So then we repeat the process in another four hours because the blood test clots, of the medications aren't in range or they need a fresh sample for something.

Today we have also had some fun times. The Currumbin Wildlife Sanctuary had some animals downstairs that we got to see and touch.  Little things that bring a bit of joy and excitment to so many kids having difficult days.

Please pray the Heparin stays in range now that they have increased the dose. No more veinous blood tests this visit please.  INR finger pricks we can manage others we have just had enough of.  I will not tell him to toughen up, that he is a heartkid and he needs to get used to it.  Four year olds should not have to get used to such things.

Day Three

Sam fasted from 4am and went in for his cardiac catheter at 1.30pm.  The poor little guy was so hungry that he was ready to take a bite out of whatever was nearest and finally as he nodded off to sleep, they came to take us down to the cardiac catheter lab. 

I carried him down trailing his Heparin drip tree with us, and he was a little out of sorts after being woken up from his sleep.  we sat down there for about 15 minutes prior to be taken in and this gave us time to take away his anxiety by telling jokes and whispering stories that I made up in his his ear.  The quiet voice and monotone really calms him for some reason.

When the time came I dressed up in my scrubs to go with him into the lab.  He was a little nervous but laid down and giggled nervously. The doctors and anesthetist were excellent and joked with him while they administered the sleepy drugs into his cannula port.  And over the period of five minutes he  giggled and sang as he drifted off to sleep.

3.20pm we received the call to say that Sam was awake and in recovery.  He is awake and pretty cranky but doing extremely well.  I think that he is allowed to be cranky considering the course of his day.

The bad news is......

THERE IS NONE!!!

The good news is...

Sam's heart required no intervention during the catheter, so it was completely a diagnostic procedure.  There is slight narrowing of the pulmonary artery but it is in the areas that will be addressed by surgery so it does not need any attention yet.  There were no collaterals,  a stent was not needed and there was no ballooning necessary.  The pressures in his heart are at the lower end of the scale and so the doctor sees no reason why the Fontan would not be an option for Sam. Seriously, we could not have asked for a better report.

PRAISE GOD!! (Insert video of me dancing here)

Right now he is having a toasted sandwich and strawberry milk. The plan is to keep him on Heparin and recommence his warfarin tonight. At this stage we are looking at a Friday discharge. No blood tests tonight, we get to sleep through this evening.

So happy. So thankful. So blessed.

Rough Night

The night was not pretty, a bit like this picture of me at 3.30am after zero sleep.

Sam finally nodded off at around 10.30pm after the pains in his arms from the cannulas and him being woken for observations.


 Sam's cannula finally gave out last night after his 11pm blood test clotted.  So at 12am we had to do a veinous draw after he had finally fallen asleep for the night.

We found out at 2am that the blood test had worked and now he is clear for another 24 hours before he needs more blood taken.

His cath has been brought forward and we are fasting from 4am ( I say we because I can't eat in front of him either), so here I am at 3.30am making him breakfast so that he doesn't feel too hungry while he waits for his cath.

I wanted to tell you that after you all prayed for him last night, the pains in his arms subsided almost instantly.  He is just so brave and it is so hard to try and tell him to cry quietly so he doesn't wake the others in the room, as it is we have kept them awake nearly all night. I'm all emotional right now, I guess fatigue does that.

The doctors are coming around at 7am to let me know more about the rescheduled cathether.

Just need to make it through today. God will give me strength.

Day Two

Sam had a relatively good day. We have done our best to keep him busy with his two arms bandaged.  His bloods are still not right and we are still drawing blood every four hours from the same blessed cannula.  It's a miracle it's still open, please pray it remains so. They have increased his heparin again and 11pm tonight is the next time blood needs to be taken.

We met Dr Justo and Dr Anderson today both of which are going to be doing Sam's catheter tomorrow. All of the paperwork is done and he is fourth on the list for tomorrow which is looking like early afternoon tomorrow. I have great peace after talking with his doctors and I am trusting that with their skills and God's wisdom all will be well.


Today I met a wonderful friend from Facebook.  Merryl also has a heartkid, except that her 'little' girl is now married and is only a few years younger than me. It was so wonderful to meet her lay eyes upon a great woman whom I felt like I knew already.  She even brought me some flowers (insert sniffle here) and a great little book for Sam to keep him busy.

 

Ian and Vi Deed also came to visit and it did my heart good to see friends tonight. It just means so much that so many people have gone out of their way to show love and kindness to us here in this place.  It's like God has sent an army of love angels to wrap their arms around us at every turn, the good and the bad.

 

Sam listened to his 'warrior' music tonight as he drifted off to sleep.  His arms are still hurting at times and we try to distract him and give him paracetamol to take the edge off. The amount of Heparin he is receiving is quite high now, it seems he needs more than normal. I pray that he has a good nights sleep tonight and that I do too, so we can get through what we need to tomorrow.

 

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.

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.

No more!

So, I am tired.  Really, really tired of fighting.

The emotional battles, the physical battles, the spiritual battles are overwhelming.

Here we are 12 days away from Sam having his cardiac catheter. We fly out in 9 days.  It has already been postponed once before and Sam has another infection that will prevent him from having the procedure once again if it does not heal up quickly.

For just over a week Sam has a school sore in his nose that has stubbornly not healed with Quartizone and Bactroban.  On Monday after noting that it was not healing I filled the script for antibiotics and started those.  On Tuesday the fevers started and have not stopped until this morning. He has also complained of sore legs and I am hoping that is just because he is so tired. I am hoping that this is a sign that the infection is losing it's grip and I am praying that there is not something more sinister lurking in the background.

We head to the doctor shortly and then I will need to call the Mater Hospital in Brisbane and have a chat with them. Sam needs to be in really good health to go into hospital, because the risk of infection is too great otherwise.  These are complications he does not need. 

To have Sam's cardiac catheter postponed once again would be really hard on us and him. That is quite an understatement. I have noticed that he is getting more tired of late and getting puffed more easily when we are out and about, so I know he needs this surgery.  And so far we seem to be fighting a battle just to get him there.

HELP!

The Hospital Timeline (For Now)

Just wanted to let everyone know the answers to some of the questions regarding Sam's trip to hospital:

Gran Watson arrives in Longreach on Friday the 15th March

Sam has his last dose of Warfarin on Saturday the 16th March.

Sam and I leave Longreach on a late afternoon flight on 17th March. Don and Jack remain in Longreach and continue to attend work and school. Gran Watson will be helping love and look after my family in my absence, God love her.

Sam is admitted to The Mater Children's Hospital on Monday the 18th of March and put on a Heparin drip.

Wednesday the 20th of March is when Sam has the diagnostic cardiac catheter.  This involves Sam being anaesthetised, and having a thin flexible tube threaded up through an artery in his groin to measure the pressures in his heart. In addition to this he may also have a stent put in his PA (Pulmonary Artery) to prepare and provide the best possible outcome for the Fontan Surgery.  Most of all this catheter tells us whether Sam is in fact a candidate for the Fontan. you can read more about the Catheter here.

All going well, Sam's warfarin will be re-started following this procedure and he will be released the next day.

On Friday 22nd March is is likely that Sam's cardiologist will review Sam's catheter results and then give us the news.  If Sam is a candidate for the Fontan we will then be given a date for surgery over the coming days.  If not then it means that nothing can be done for Sam's heart for now and we will have to wait until Sam's heart goes into failure before he is placed on a transplant waiting list.

As you can see we don't know when Sam's surgery will be.  We believe that a way will be made for him, because we believe the promises that God has given us.  However we don't know what that way looks like or how it will all come to be. 

When Sam does in fact have his Fontan operation, Don and Jack will be driving down to Brisbane to be there with us. 

In between when Sam has the catheter and the Fontan surgery, he and I will be staying on the Sunshine Coast with Granny and Grandad Bedford.  If the time is much more than a few weeks, I will likely return home with Sam and make the trip to Brisbane again at a later date.  We are praying for Sam's best interests and our own sanity that the surgery will go ahead while we are still on the coast.

I hope that this all makes sense.  Please ask any questions you may have and I am happy to answer them. Thank you for your love.

Two More Weeks

This time in two weeks will see Sam admitted to the Mater hospital for his diagnostic cardiac catheter.  During that time he may also need a stent in his PA (pulmonary artery).  From there his results will be reviewed to make sure he is a candidate for the Fontan surgery that he needs.  Lot's to do, think about and pray about before then.

Yesterday at church we prayed for another couple who are leaving our church to move town.  After we did, Sam asked our Pastor if they could pray for him too.  So everyone did.  They put their hands on his head and on his shoulders and prayed for him.  All the while he beamed and smiled at them giggling every now and then for good measure.  He is just so full of joy our little boy. 

I just want to wrap him up in my arms and keep him like that forever. But I know I can't and so I just have to trust that God knows what He's doing, no matter how much I want to tell him otherwise.

Carrying my Chains

There are so many chains that hold us back and bind us up.  Everyone's chains are different at different times of their lives, in an effort to keep them from being truly free and unhindered by what surrounds them.  Here are some of the chains that bind me at times, maybe you have also carried their weight.

Anxiety

FEAR

Rebellion

CONFUSION

Melancholy

The chains are constricting, life sucking.  They hold you back from leaping into life and love.  They make you nervous and unsure of yourself and who you really are.  They are not godly and if you truly want to live life the way God intended; they have to go.  Identifying the chains is easy it's what comes next that is so hard....

When you know Jesus, you simply ask him to break the chains that bind you.  He literally sets us free by breaking the chains that bind us, loosening the hold they have over our lives.  Just getting to that point can be hard, because if you ask for help you are weak right?  Need a crutch to get through life?  I have learned to get over that.  I ask for help easily, because I know that trying to break those chains in my own strength will only get me more tangled and bound.

However...

Even after we are set free from our chains we can still choose to carry them around.  You heard me. What's binding us is broken and we have a choice to be free, but we choose to carry around the chain.  It drags heavy and weighs us down but we hold onto it because in an odd and disconcerting way, it has become comfortable and famliar to us to be fearful, to rebel, to be confused, to be a bit down.  So instead of casting that chain off completely and diving back into life, we hang back with what we know, giving that chain another opportunity to draw tight once again. 

I know.

I've been there.

I'm still doing it,

but that doesn't make it right.

You see Jesus makes a way, but we still have the choice to live in bondage, or in the fullness of life.

So today I have asked God to break the chains once again and I am casting those chains off, because they are holding me back, stopping me from doing things I love. Holding me back from reaching my goals and restricting me from loving those around me like I should.

I don't have time for chains with what we have to face in the next few months.  I am gong to need every bit or strength I have and then some. Goodbye chains, hello freedom.