Thursday, June 25, 2009

A short blog about a tough day

Today was a hard day - we walked in to find Samuel really puffy and bloated and it wasn't clear why. Everything about him is swollen and he has been put on various medications to help his fluids come out of his tissues, but he didn't seem to be responding. They checked his albumin levels as they wondered if this was a cause. His levels came back at 20 (should be about 30) so they were giving him an infusion of albumin as we left this afternoon, which they hope will help him release the fluids from his tissues so it can drain through his lymphatic system.

I couldn't look at Samuel without crying, so I spent most of the morning just sobbing with my hand on his head.... just willing him to know that I was there and loved him, willing him to fight on, yet feeling torn that he is going through so much. The disappointment of him not responding to medications as you had hoped, that he hasn't 'bounced back' after his heart op is great.... and painful to see him looking like he looks. The Drs are hopeful that if we are all just patient he may respond to the different approaches, but as he is still so young (19 days today) and doesn't have a normal baseline to gauge things by it's not easy for them to treat him..... but they continue to liaise with each other and try new things.

It was lovely to spend time with our special friend Raewyn Mortensen today - to cry and talk together, to drink chai latte and laugh about normal things too - it really helped get through a bleak day.

Francis has gone in to stay the night at NICU with Samuel and I will do the morning routine with the girls and head in after that.

We arrived home to a very special letter and box, filled with love and empathy from some very special people who have been through something similar..... as I read the letter to Francis & the girls and wept (again!) the girls were saying, 'Are you crying cos you're sad or happy Mum?'....... I wasn't even sure! It was perfect timing and a letter that touched our/my heart.... so I guess they were tears of joy.

So we hope and pray that Samuel starts responding to medications. That the fluid would leave his lungs and tissue and he would have a good night.

Hoping tomorrow will be better for him... with love, Shirl

13 comments:

Anita said...

Oh no, we are sorry Samuel is having such a tough time and you all have had a difficult day. He is a fighter and will continue to fight on. God is with your little man. It is so hard to see them suffer. God's mercies are new every morning, tomorrow is another day, may it bring improvement.

The Heslop Family said...

Oh guys, what a journey! We pray that Samuel responds to the treatment tonight, and recovers from his heart operation well. And we pray that tomorrow is a better day. We are thinking of you, and praying for you all.... especially Samuel.
With much love,
Nigel, Bron, James and Ollie xxoo

Margo said...

Prayers, hugs, tears and lots of luv from us to you xxxx

Dougherty Family said...

We have just read all of what Samuel and you all have been going through ,heart wrenching.So sorry we haven't contacted earlier ,our own lifes challenges seems so unimportant when we think of the battle your little man is having.Thanks for the reality check Samuel James , look forward to you meeting my little Sammy one day.Our prayers and thoughts are with you guys , all our love Colin,Fiona,Samuel,Rebekah and Phoebe XXXXX.

Anonymous said...

Guys, just had a catch up. Toattly continuing to remember you all in my prayers. Big love, Jen (and the rest of the Campbell crew!)

Andrew said...

Lots of love.... XX From Oi, Tahn and Andy

Eckrotes said...

It's about 3:45 a.m. for you, praying you are all sleeping well and getting the rest you ALL need. I can't imagine the ups & downs you face daily. I sense it just reading the blogs, a good report, then a set back, then a good report. We are learning more of the meaning of praying without ceasing. I ache to give you all a hug. Love, the Eckrotes

Mike & Hilary said...

So sorry to hear of your tough Thursday. Super special that Raewyn could be with you on a day when you really needed it and then the letter and box too - much more than co-incidence as you know. Big hugs and prayers. Lovely to see the photos from the previous day. Thanks for being a couple of bloggers!

Katepai said...

Hang in there Guys.

Kate

Lea said...

Dear Francis, Shirley , and girls - Words are so inadequate, or at least mine seem to be. Your friends have already expressed so much of what I want to say.
I know that God is holding Sammy right there in the middle of His palm and that He, too, is very sad about how things have been for him - so little, so beautiful, so defenceless.

I love the picture of Sam looking out at the world - kind of puzzled look in his eyes, wondering what the heck is happening, no doubt.

COntinue to hold you in my thoughts and prayers - for strength, hope and comfort. Al;so for good sleep to keep you strong.

Blessings

lea

Anonymous said...

We're really feeling for you all and we're keeping on praying. Love to you guys, Jodie

Carole Parker said...

Dear Shirley, Francis and the girls- I am so sorry that you are going through this really tough time, but you are not on your own, you know that. I have told my family that we are going to see a miracle here, and we will...just hold on in there. Love the pictures of Samuel, he has the most beautiful eyes.Rest assured you are so much in my thoughts and prayers at this time.

Andrew, Ke'ala & Tataiarangi said...

Kia ora Francis and Shirley,
I was saddened to recently find out about Samuels battles. I cannot imagine the turmoil, uncertainty and anguish that you have both been through in your journey with Samuel in the past weeks. Our hearts and thoughts are with you and the girls. We will share a prayer for his safe recovery and for the continued blessings that you offer as wonderful parents. Nga mihi, nga aroha atu ki to whanau. Kia kaha. Andrew, Ke'ala and Tataiarangi