Friday, July 24, 2009

End of Week 7

Today I was in with Sam and Francis was home with Jasmine. Normally the day after surgery is very busy, but today seemed busier than normal. I arrived just as the ward round arrived - 6 people of various specialties going over Samuel's notes, with the nurse updating them on his comfort levels and most recent blood results. They were very concerned about his liver function and also the levels of calcium in his blood. They had lengthy discussions about the best way to counter these problems and it was agreed to alter his individualised nutrition and to order an ultrasound of his liver and take further bloods for more specific tests. They left and 10 mins later in walked the renal team, who then went over similar discussions, then came the radiologist and sonographer to do Sam's ultrasound which took about 20 mins. They left as the gastro team arrived - again to discuss his overall care and give their input as to his oral feeds, so he has now started breast milk again at 1ml every 2 hours, plus some medicine which is to help push this through his stomach. Then the surgical team showed up to check their handywork of yesterday and his other wounds. Somewhere amongst this the nurse managed to take him off ventilation and put him back on to CPAP. He was only on this for a couple of hours and was coping so well that they then put him on to low-flow oxygen.

Sam was surprisingly relaxed and settled inspite of being poked and prodded numerous times, covered in jelly for the ultrasound and having bloods taken. He became unsettled as I was about to leave, so I got to hold him for about 20 mins and he did settle a little.

I found it a hard day - post-op is always hard for me. Although the surgery yesterday was a good result and he coped well with the surgery, the fragile state of his major organs is a constant concern. And there just doesn't seem to be space to breath and celebrate any good steps as there is always another ongoing serious concern that they are addressing. We have always known it will be tough, and at the 7 week mark it is just plain tough. I feel relieved when he survives another operation, but still sad for him as the reality is that each surgery is not to correct a problem (his heart operation was the only op that was), but simply to manage his condition better. Today the tears flowed as I sat in the background and listened to the many discussions and as I looked at our darling with wires and bags hanging out and off him. I feel so helpless, yet am so glad to be with him as when Sam gets upset he responds to our voices and touch. I guess I want to share this as I am muddling through and I have my down days and today has been one of them. So I am still peaceful and sad and frustrated and hopeful - it can all co-exist and God knows that and sustains us.

Actually there are times I know real joy - that's when I just savour the moment and am holding Sam or washing him or just gazing at him....

So today I learned afresh about my inability to be strong or hopeful or joyful on my own.... I leave you with some great verses my friend reminded me of (thanks Carol!). “At that time we were completely overwhelmed, the burden was more than we could bear, in fact we told ourselves that this was the end. Yet we believe now that we had this experience of coming to the end of our tether that we might learn to trust, not in ourselves, but in God who can raise the dead” (2 Corinthians 1:8-9 PH).

Sleep well
X Shirley

13 comments:

Anonymous said...

Shirley,
My prayers are for you and your darling boy. I weep with you so many times but also rejoice often as Samuel overcomes so, so much. God bless you abundantly. XXX

Anonymous said...

You are doing a truly amazing job, standing beside your beautiful son with love and compassion - and he is putting up a brave and strong battle. Know that we are all standing behind you and keep your family firmly in our thoughts.

Yolanda said...

Shedding tears and sharing joys with you, Shirl. My mom calls him, "Our miracle baby" and we check his progress every day. Praying that God will sustain you both day and night. Beautiful verses you shared. I also love your prayers you share at the end of the blog - it's like we're praying them together.

Love and a hug

thecarlows said...

Thankyou for sharing today with us all, Im sure none of us can understand how hard it is for you both, we think and pray for you daily.

Love us all. xxxx

Anonymous said...

Our prayers, thoughts and tears are with you all...keep resting on God...He' will carry you through..when you're weakest He's strongest:) Some thoughts from His word...Romans 8V26 and Isaiah 40v11....may you be encouraged that the spirit intercedes for you as well and then in Isaiah God carries those who are with young..He gently guides...Oh may you know God's strength today as you walk through this up and down time...all part of the process and thank you for openly sharing this with us...

With love,
Gordon & Coralie McLay and family

The Heslop Family said...

Oh Shirley, we're sharing tears with you, as well as the joy of the good times. What a huge journey you guys are on! Our love and hugs to you and Francis, and Samuel and the girls. We can't begin to understand how hard this is, but stand with you in love and prayers. God bless.
Bron and the boys xxo
PS Thank you for sharing your days with us. xxoo

Kurt Campbell said...

Holy Father I pray that your love for Sam will bring strength and comfort to his family.

Anonymous said...

My heart feels for you all. God has promised that 'His grace is sufficient for you..' and I know that he is there every moment - even when we struggle and just can't do it anymore. Thnaks for your 'realness'. Love to you
Jude xxx

Hamish said...

What a great verse and so true. God is at his most real when we are at our weakest and we cast ourselves upon him. Glad you can see the moments of joy through all the madness. God Bless you all.

Anonymous said...

Our hearts really do yearn for you guys. We know that you need to find strngth each day and we continue to pray that this will be the case and as you rest in Him you will find the strength that you need. It must be so tough but as you say there are moments of real joy - treasure those moments as I am sure you do. We love you and your beautiful family. MERRW

tau said...

hey beautiful people!
can't believe it was only a week ago that i saw you!
we continue to read your blogs and pray for little baby samuel...
big big loves to your family
from ours
the walkers
x x x x x
("i'll be HOME AGAIN..." priceless)

The Browns said...

God perfects us in our weakness. He is with Samuel in the moments when you are away from him. His unfailing love will carry you. These comments are feeble input from fallen men, but the Father is above all else.

Anonymous said...

Shirley, I really admire your strength and courage. It is one massive rollercoaster ride you are on. I can't imagine how emotionally exhausted you must be! Keep trusting! We're praying for you Davy family.
Much Love Always
The Davies Family, Marianne, Glenn, Caleb and Jacob xx
Ps we head back to Bangkok on Friday!