Christopher has put on even more weight today and he looks huge around his waste. I've even had to send out for new underpants for him as the ones we brought with us don't fit him anymore. His right leg is double the size of the other one and he's walking with a limp because it's so painful. Christopher still has a lot of fluid on his lungs, but they assure me that they're keeping an eye on it. Also Christopher's INR levels are sky high. They're meant to be between 2-3 and they're 9.4. Worryingly high I'm told. So his Warferin has been stopped for now. We've been talked through the do's and don'ts of the drug, it's serious stuff and he's on it for life now. The cardiac liaison nurse say's he can't play his beloved football anymore because it's a contact sport and its potentially very dangerous for him now. She's also talked through food and lifestyle changes with us. It all seems very depressing. She's also putting a care plan together for when Christopher goes back to school. We've just been told that some Children's Hospitals in this country don't even use Warferin. so all these changes to Christopher's life don't need to be made if he stays on Aspirin. That makes me so mad and I cant stop thinking about how Christopher's life will change forever. If he needs it, then he needs it and that's different, but when some do and some don't and there isn't any actual evidence that its best, then I'm really unhappy with the hospitals decision to put my baby on Warferin.
Christopher is truly amazing and inspirational. He never moans or cries, he even says thank you to everything, even when someones taking bloods or causing him pain. Everyone who meets him remarks on how well mannered he is. I'm very proud of him, he's a star!
me
Before/After
Saturday, 27 August 2011
Thursday, 25 August 2011
Saturday 16th July
Christopher has had his last drain removed this morning and he's been moved off ICU back to the ward K2. Back on the ward they tell Christopher he's set a new ward record for drain removal after a fontan operation, he's thrilled lol. Christopher has an echo and they pick up that he has fluid on both lungs and his heart. They say they're going to keep an eye on it over the next few days and that the fluid around his heart is only minor. Christopher worryingly has gained 16lb in weight in the last 4 days without eating anything, I'm not that happy, hmmmm starting to worry once again. One of the doctors on the ward keeps annoying me because he keeps saying 'but how accurate do we think Christopher's pre-op weight is'?, very annoying as I'm his Mummy and I can see with my on eyes how swollen and uncomfortable Christopher has become. He looks like the Michelin Man, no joke! The positives of the day are- the Sister off ICU took me aside before we were moved and told me that she thought Christopher looked amazing for a fontan operation and that fontan children are usually sickly, weak looking children and my Christopher looks totally opposite. We're having a great day compliment wise hahaha.
Friday 15th July
Christopher is still on ICU. He's not eating or drinking yet and he's been sick and felt sick all day. He's also swelled up a lot because of his surgery, no one seems to be concerned about it, but he's so big even his fingers have swollen. He's had two of his three drains out today and was a star while it happened. He's now only got one left in. Everyone's amazed because usually the drains are in for at least a week. He's also off some of his drugs. He's still very sleepy and weak though. Chris and the girls have sat with Christopher all afternoon while I went to get some sleep. Our girls are amazing, they're so patient and they're taking all this in their stride, I don't think I would have been this calm and caring at their age. I'm one very proud Mummy x
Thursday 14th July
Christopher's still on ICU, he got taken off the ventilator that morning. Chris and the girls get here early. Christopher eventually opens his eyes for the first time since his surgery. The rest of the day he's in and out of consciousness. I go back across to Ronald McDonald House to catch a little sleep, as I was up most of the night watching over him. Intensive care is a pretty scary, draining place. It's nothing like what you see on the telly. Later on that day he's causing a little concern because he seems to have an irregular heartbeat and it's effecting his blood pressure. The positives are, I have a pink baby after all these years. I can't stop looking at his feet, they're no longer blue. By the end of another long day, Christopher has removed his oxygen mask twice to say 'Dr Pepper' and ' Chocolate', aw bless.
Wednesday 13th July
D-Day!! Got up at 5am, not that I slept much anyway. Big Chris drove to Alder Hey, with me sat in the back of the car with Christopher and Millie, watching Fred Clause on the DVD player!!!??. We got to the hospital ward just before 7.30am. Christopher's surgeon greeted us, we have a chat then sign the consent forms. We sit around waiting on the ward for about an hour trying to take Christopher's mind off what's going to happen. I cant really explain how I'm feeling, its a mixture of a lot of things, like pure terror, fear, worry, stress and even joy at the thought of our little man having a much better and longer life. He's struggled through the last tens years, living day to day with only half a heart. He needs this surgery before it's too late. This will save his life!
Just before 9am, Christopher is taken to theatre and he chooses his Daddy to go with him into the sleepy room, I am the most pathetic person when it comes to seeing any of my babies suffer. We've been told the operation will take 6-8 hours. We all go over to Ronald McDonald House, where I'll be staying, to sit out the long wait. It's nearly 3pm and we start thinking my bedroom phone will ring at anytime with news. Nope, still waiting, 5pm comes and goes. By 7pm we're all actually starting to panic. Then at 8.45pm the phone rings and one of Chrisopher's nurses tells us he's out of theatre and we can go to Intensive Care to meet with his surgeons and see Christopher. Phewwwwwwwww, everything up to that point sounded so positive!
We get to the Intensive Care Unit and I just feel something isnt quite right, Christopher's surgeon starts talking us through his operation and throws into the conversation that Christopher gave them a couple of interesting times. Hmmmmm, I thought about that for a second then asked them to explain what they ment. We were then told about some scary times at the start of his operation when they struggled stemming a bleed in Christopher's heart and then they had to make the decision to attache Christopher to the heart & lung by-pass machine through the artery in his groin. Which they don't usually do. We were told he had a rough time and that was why it had taken nearly 11 hours instead of 6-8. While Christopher's comfortable on ICU breathing through a ventilator, I stay with him most of the night and Chris, Millie & Alex travel home. Sometime around midnight I go into shock and can't shake the fear of what might have been. I don't stop crying for the next few hours. Eventually I go over to Ronald McDonald House and try to sleep for a few hours. I'm overwhelmed with grief.
Just before 9am, Christopher is taken to theatre and he chooses his Daddy to go with him into the sleepy room, I am the most pathetic person when it comes to seeing any of my babies suffer. We've been told the operation will take 6-8 hours. We all go over to Ronald McDonald House, where I'll be staying, to sit out the long wait. It's nearly 3pm and we start thinking my bedroom phone will ring at anytime with news. Nope, still waiting, 5pm comes and goes. By 7pm we're all actually starting to panic. Then at 8.45pm the phone rings and one of Chrisopher's nurses tells us he's out of theatre and we can go to Intensive Care to meet with his surgeons and see Christopher. Phewwwwwwwww, everything up to that point sounded so positive!
We get to the Intensive Care Unit and I just feel something isnt quite right, Christopher's surgeon starts talking us through his operation and throws into the conversation that Christopher gave them a couple of interesting times. Hmmmmm, I thought about that for a second then asked them to explain what they ment. We were then told about some scary times at the start of his operation when they struggled stemming a bleed in Christopher's heart and then they had to make the decision to attache Christopher to the heart & lung by-pass machine through the artery in his groin. Which they don't usually do. We were told he had a rough time and that was why it had taken nearly 11 hours instead of 6-8. While Christopher's comfortable on ICU breathing through a ventilator, I stay with him most of the night and Chris, Millie & Alex travel home. Sometime around midnight I go into shock and can't shake the fear of what might have been. I don't stop crying for the next few hours. Eventually I go over to Ronald McDonald House and try to sleep for a few hours. I'm overwhelmed with grief.
Tuesday 12th July
Have spent the day packing, cooking, baking, cleaning etc etc. It's been good as its taken my mind off, Christopher's operation tomorrow. I've filled the freezer up with healthy home cooked meals and all of my cake tins are packed to full capacity. I've even packed my running stuff in my case, as I'm planning on jogging around Liverpool for my training for the Great North Run in Sept. I'm doing the run in aid of Ronald McDonald House Charities. It's an amazing charity and it's run completely on charitable donations. I have a justgiving page which is under my name Justine Forrest, if anyone out there has any extra pennies they don't know what to do with. Every penny makes such a difference.
Getting back to Christopher's operation, we've been told we may be in hospital for up to 8 weeks, as after Christopher's surgery he'll need chest drains and they can take a while to stop draining, fingers crossed they don't, we have a life to lead. We need to get home lol.When Christopher was first born we stayed at Alder Hey for 9 very long, stressful weeks before he had his first operation and we came home.
Getting back to Christopher's operation, we've been told we may be in hospital for up to 8 weeks, as after Christopher's surgery he'll need chest drains and they can take a while to stop draining, fingers crossed they don't, we have a life to lead. We need to get home lol.When Christopher was first born we stayed at Alder Hey for 9 very long, stressful weeks before he had his first operation and we came home.
Sunday 10th July
It's my birthday today. I'm 41 years young lol. We're off to Southport for the day because, Alex is in a Lancashire Girls Golf comp. I was born in Southport and I love going back to visit. I have really fond childhood memories of the place.
I always love my birthday, but this year I'm feeling a little under pressure to be happy and I'm really struggling! My little boy, Christopher is going into Alder Hey Children's Hospital on Wednesday for another life saving heart operation. We've spent the last 10 years knowing that he would need all these operations etc, but it doesn't make it any easier. I'm now starting to panic and bite everyone's head off at the slightest thing, it's funny how stress can get to you. I wish I could go to bed and wake up at the end of August :( Boo!
I always love my birthday, but this year I'm feeling a little under pressure to be happy and I'm really struggling! My little boy, Christopher is going into Alder Hey Children's Hospital on Wednesday for another life saving heart operation. We've spent the last 10 years knowing that he would need all these operations etc, but it doesn't make it any easier. I'm now starting to panic and bite everyone's head off at the slightest thing, it's funny how stress can get to you. I wish I could go to bed and wake up at the end of August :( Boo!
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