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