Sunday, November 7, 2010

Hi's and Low's

A Low: Well I made it home, but without Sam. Yesterday I woke about 6am with terrible stomach cramps, then relief that for the first time I had a room with an adjoining toilet! I quickly realised that diarrohea and vomitting were not something that Sam needed, so feeling like I'd been hit by a bus I headed home as quickly as I could. So I've been home for 2 days in bed with periodic sprinting spells. Friends, Anne (Nana) and now Francis are up with Sam. The girls thankfully both had pre-arranged birthday parties/sleep overs so they were taken care of until today.

A Confusion: This admission has been a bizarre one. On Monday the orderly came to take us down for the procedure, and as we went to leave the lift on level 2 (surgical) the nurse said that we should be going to level 1 (radiology) - that is what the Drs on the ward thought. But he insisted it was straight to theatre, so we went, asked for it to be checked and yes Sam was infact going straight into theatre - contrary to what the surgeon had said previously. For the first time I gowned up and went in to theatre with him. Sam is much more knowing now and no matter how hard it is for me as a Mum to watch my son be put to sleep, if I'm giving him consent to be there and he has no choice, I have to go through it with him. They were a lovely team and a great anaethetist, so it was special in a weird/tough/sad kind of way to be with him. Then I left and an hour later got the call to go to recovery. I asked the anaethetist if she could give Sam some morphine or other strong pain relief but she was sure that paracetemol would be sufficient for this minor procedure. We get him up to the ward and I've got a gut feeling that Sam is just not happy and is going to need more so I ask the consultant to chart some morphine, but he too doesn't want to as wants to wait to see if it's needed. Well 2 hours later and the on call Dr is called because clearly Sam needs morphine! It is so distressing watching your son languishing in pain when you have insisted twice on otherwise and been ignored! And, he needed to have 4 hourly morphine for the next 3.5 days. For those 3 days Sam is just lying in his cot whimpering - no smiles, no chat, not wanting to be touched, pushing away any toys. It was awful to see him like this. So on Friday I mention on Drs rounds that I'm concerned that Sam needed so much morphine for such a minor procedure and was there something else wrong? To which people were making comments about how it's quite something he's just had done, give the guy a break he's just had a significant procedure done! I'm stunned - you can literally hear the complete opposite information from one Dr to another and it's very frustrating sitting in the middle trying to decipher who to listen to and who not.

A Frustration: The tube went in fine, but it was really gushing a lot of fluid out from around the tube between the fitting and his skin. This was not normal and shouldn't be happening. So we head back to radiology and they inject dye into both ports but it looks perfectly in position. They also check the third port where the water is put to fill the balloon that anchors it in position. Everything looked fine, but they are ordering in a slightly smaller fitting as this may be better. So we head back to the ward and it's decided to put his stomach on free drainage overnight to give his stomach a break and help the stoma heal around the tube. The next day on Drs rounds they are pleased it hasn't been leaking, but as I point out there isn't any fluid to leak as it's on free drainage. One Dr says that we need to challenge the tubing by clamping the tube and letting the stomach fill up. Literally within 1 minute another Dr enters the room who sees the tube now clamped and he wants to leave it on free flow as he doesn't want the tubing challenged. So I'm standing in the middle wishing medicine was actually the science that I once naively thought it was, yet realising that before me are 2 very dedicated super bright Drs that both have good logic behind their totally contradictory plans. I do respect them immensely, for their years of devotion to studying the human body in order to help people like Sam, yet so often there are more questions than answers. So amidst this frustration I sit and read Psalm 139, like I did again tonight reminding me how little we know, yet our creator knows all....

You made all the delicate, inner parts of my body and knit me together in my mother’s womb. Thank you for making me so wonderfully complex! Your workmanship is marvelous—how well I know it. You watched me as I was being formed in utter seclusion, as I was woven together in the dark of the womb.

16 You saw me before I was born. Every day of my life was recorded in your book.
Every moment was laid out before a single day had passed.

17 How precious are your thoughts about me, O God. They cannot be numbered!
18 I can’t even count them; they outnumber the grains of sand!

A HIGH: Living on Ward 26B is not normal, but it becomes a bit like home. And you get to know other families and you get to love their kids as they face their challenges. Well this week it was such a lovely surprise to meet up with Baby 'A' again. Baby 'A' is a similar age to Sam, but I met her a year ago when she was as yellow as Bart Simpson and in desperate need of a liver transplant. Her Dad was the donor and this week they were back in hospital for her 1 year check. It was such a delight to see this beautiful little girl walking and talking and enjoying life. It was so lovely to see her parents and to share in their joy at the gift of life that Baby 'A' is. So that was very special and a lovely distraction from the other kids on that ward, some of which are really struggling physically but have gutsy little spirits.

Francis just texted to say that Sam's tube is leaking everywhere and is still very lose. So we don't know how long this admission will be - we're glad he's back to his usual happy chatty self, but we need him to have a functioning tube. We shall wait for Drs rounds tomorrow to see what they say, but I'm guessing it will be either, take him home and bring him back in when the new tube arrives (being ordered from abroad) or we have to stay in until the tube arrives as we need to monitor his fluid loses/daily electrolytes and supplement them. I'm guessing it's probably the second, but hoping it's the first.

Off to sleep now, but maybe a piece of plain toast and cup of tea first!



The Doughertys said...

I cant say it guys are amazing. We really feel for you and want Sam to be home and back to full strength as soon as possible. Hope you are feeling strong and healthy again real soon to Shirley. Our love and prayers come your way. Fi and Col xxx

Nicholls's said...

If doctors had children who had been through what Sam endures I wonder if their pain management procedures would be different and whether their bedside manner would be more coherent to the parents? Being on the other side of the fence is probably not where they have been by the sounds of it.
Praying that this part of the journey is resolved speedily and satisfactorily so you can be home again.
Love the photos - Sam looks such a happy, handsome little chap with his family. Praying for lots of Hi's in the coming days. Melvyn & Sally