Monday, October 17, 2011

I have a lot to say about last night.....

My heart is full and my body is tired, but at 6am this morning, with me fully clothed in bed beside Sam in his cot, I feel compelled to write.....

Last night heaven came to earth.....and we were a part of it. I don't think it's strange and maybe it should happen more, or maybe it happens all the time but we're not aware of it, but I want to tell you about it.....

Sam had a bad day. His baseline kept creeping up over the day - his temps wouldn't get as low or stay down as long with pamol, his rate of breathing when asleep crept from 120 to 150, his breathing started to labour and deep down I knew it was going to be a rough night. On rounds the Dr informed me that he was still growing positive fungal/yeast cultures on his central line - this was a first for a fungus in Sam's history, and fungus are hard to get rid of. More than likely the GJ swap stirred up a yeast overgrowth in his gut that got into his blood and found a home on the plastic of his central line. It takes time to grow a culture to figure out which drug to use, but time had shown that it wasn't the more common candida, so they changed the anti-fungal medicine he was on and at 4.30pm he had an hour long infusion of this new drug. At 6 pm his usual TPN and milk were started. At 7 his temps started going up, he was given pamol but this time he didn't settle like normal. I had a gnawing feeling in my gut.....roll forward to 11 and he was 39.9 and his breathing was hitting 200 and I was really concerned, the nurse called for a Dr to review, and they came and took a look and it was decided to increase fluids to help cool him down and to give him another dose of pamol....at this point I was tired and thought of bed but as I went to get ready I clearly had the words in my head and heart, 'stay, watch and pray' and I thought of Jesus struggling before he was to be crucified and he had asked his mates to stay awake to pray for/with him. I didn't want to, I wanted to sleep, but deep down I knew this was serious and that God had asked me to do this....so I stood over his cot and I prayed - I sang bible stories I had learnt from my Dad in Sunday School and I pleaded with God to help Sam and to give him peace. At 11.45 Sams stats carried on going up and I knew the pamol hadn't kicked the high temp and there was something in Sams eyes that showed me he was scared.....and I'd not seen that before. I asked him if he wanted me to hold him and he put his arms up limply, so I picked him up. I was cuddling and rocking him when it happened - he started fitting, having convulsions and it was awful. I was so scared, scared for him and scared at what was happening. He shook for about 5 seconds and then he started screaming this awful scream and I held him back to see him and he was terrified. I lay him down and rang the bell twice, which means its an emergency and all the medical team appeared in his room - and then he had another seizure for a few seconds.... someone called, 'code pink', someone ran from the room, new monitors appeared, lights went on and Sam was screaming. The PICU team arrived and they did there thing, but happy that Sam was hydrated. The gastro consultant was called and it was agreed to give him a bunch of other meds to take his now 40.9 degree temp down and to take a chest xray just to rule out anything there.....so roll on to 2am and Sam is settled and sleeping. All the windows are open in the room to try and keep the room temp down, hence why I slept with my jumper on. The rugby fans staggering home in good cheer and song 6 floors below put paid to much sleep, but I lay here so thankful that my boy is still with us.....I wonder what today would have looked like had God not loved Sam enough to tell me to stay up to watch and pray.....

I know many people read this blog and I know many people think I'm weird - I'm fine with that, often I wish I was different myself, but I just have to share this with you. I could pretend it didn't happen so maybe less people think me weird, but it did happen and who am I to deny that? I think that many people think that knowing Jesus, being a Christian, is about having a ticket to heaven when we leave this earth...... actually when you know Jesus it's about having heaven here on earth now....he promises to be with us and never leave us, to give us his strength and hope in the struggles that we face. He doesn't say life will be rosey and he will make it plain sailing or that Christians will be perfect - He says He will love us in our imperfection and help us as we bungle along the rollercoaster of life and today my heart is full as I live in the knowledge that God was with Sam and I last night, not in some book that most people never pick up in their life, not in Jerusalem or long flowing robes and a bad beard, but room 2 26b Starship Hospital. And today he will be with me, amidst the tiredness and the tears and worry and conversations and possible surgery for Sam.....for God to love me and Sam that much is too hard to put in words, and that reality is for each and every person that walks this earth, created and loved by Him.

This is new territory for Sam - a fungal infection that is, as they are known to be incredibly hard to beat unless the new 'home' they have inhabited is taken away - for Sam this is his central line. He's had it for nearly 18 months, which is good in anyones books, but it still means surgery for Sam. There is talk of removing it and putting in a PICC line - a temporary line for a few weeks whilst they hit him with anti-fungal drugs to kill the bugs, then when they are happy the fungus has gone they would put in a new permanent central line....

But for now Sam is sleeping, his temp is 36.8 and he is oblivious to what is ahead for him....I guess we are a bit too, but we are confident and peaceful that it's not unknown to God, THE God, OUR God, MY God, who lives here on earth with us. If you're inclined please do pray for Sam today and for the many talented medical people that love and care for Sam - We deeply respect their skill and care for Sam, but they have big decisions to make about Sam today and we pray they will know wisdom and consensus.

X Shirl

7 comments:

Lea White said...

What an incredibly rough time you had. You are in my prayers and thoughts!

Juliette Allport said...

Hi Shirley and Samuel,
Lynley directed me to your blog... We are praying for you all - that this infection will be quickly beaten, that little Sammy will be comforted by the amazing love of his family and peace of Jesus, that you will feel rested even though you haven't had much rest... our hearts are with you.

Lots of love and blessings, Juliette

Anonymous said...

You must of just written this, I am still in last night so my prayers will still be going up for sunday night if I start praying now. Noah wheezy and needing puffers and that's enough to cope with, we thank God for the amazing strength he has/is giving you. Our love to you all, ERRWN (M in UK)

Jill said...

I am praying for you and Sam, and thanking God that He was so obviously looking after you last night. Will be asking Him to guide the Drs in the decisions they make about the best way to help Sam, and to give you His peace that truly does pass all understanding.

Kate Manson said...

You are not weird Shirley, you're coping extremely well in a very stressful situation YOU ROCK!!

Anonymous said...

i have tears in my eyes as i read your blog - as ever i am encouraged and amazed at the strngth god gives in just the right measure at just the right time, how you are able to see his hand of care over you all... and how you are able to articulate all of this in such a real and beautiful way - heaven on earth - how good is the God we adore our faithful unchangeable friend .... we pray that he continues to pur out his strength to you all at this time and watches over samuel. you are in our prayers (MERRWN)

sam said...

I visit Sam yesterday and had a gr8 time with him. He was in my mind for a number of days now. I emailed you to find Sam is not well. When I visit Sam yesterday. He looked very happy, but I could feel I am missing something, last night I could not sleep. I got up and started to look for Sams blog and found what you wrote here. I am in tears at 7am in the morning and I am also happy and know now why the feeling was so strong. I'm not good with words like you. You and Francis are amazing people, you two are doing so well. God bless.