me

me
Before/After

Saturday 27 August 2011

Monday 15th August

Still going to be here a while longer!
Christopher has a few different complications that need sorting out before we're discharged.
We had a surprise visit tonight from big Chris (Daddy), Millie & Alex. It was fantastic to see them and Daddy Chris was very emotional on seeing his little boy and shed a few tears. last time they were here Christopher was very poorly. Very touching visit!

Saturday 13 August

Mixed review today.
Plus side:- The fluid around his lungs hasn't increased, yay. They've upped some of his drug to try to get rid of it. Christopher's off oxygen & morphine and his sats are slowly coming back up.Since going back on Warferin his INR levels have been stable.
Down side:- The DVT in his leg is really painful and he cant stand on it, he's having another scan on it. Yesterdays xray said the infection on his lungs has not improved. He's also got an infection in his groin. The hospitals infectious diseases team are now treating both infections. Chrisopher's now refusing all treatment ie needles, medi's. It took 3 half hours yesterday to get a canuler into his hand. He's got a tummy bug and he's very unhappy. He's got a way to go, I think I'll start to relax around Christmas time. Every time there's a positive there's some negatives just around the corner.

Thurday 11th August

Well we're still here!
Christopher has taken a turn for the worse over the last few days. He's been bed bound for the last four days and is on morphine and oxygen still. Late last night he had an xray and they found he has an infection on his lungs. When I was given the news I thought we where losing him. It's been horrendous watching him go so poorly, so fast. He's had his drains out today. We now need to keep fighting on! We're not giving up yet. This week has been the most worrying of our lives. It's been a very dark time seeing our baby just lying there motionless and in so much pain, it's just been awful.

Tuesday 9th August

Christopher's Nil By Mouth once again! Roll on tonight I we might have some answers. Christopher's in a lot of pain right now.
What another very long day for everyone. Christopher's consultant has just been to talk to us. No good news. His heart pressures are up, so he's now going on some more drugs for that and one of them is Viagra, 4 times a day, eeek. In saying that, they did tell us that before they started used Viagra, Christopher would of had to go home on oxygen and be on it all the time for a few months, so in that respect it's great.They found he still has pockets of fluid around his lungs, so they didn't take any drains out. He's now also got an infection on his groin from where he was put on the by-pass machine. So he's on medi's for that too. Really bad news is he's back on Warferin. He's in and out of consciousnesses and is in a lot of pain. So we're gutted once again! It's getting harder to cheer Christopher up, it's heartbreaking at times, really draining. I had to nip to my hospital appointment at Preston today as well. everything good, my consultant thinks I have a circulation problem with my legs, that's why there so swollen and sore after 4 months. He's put me on his waiting list for a breast lift and skin removal from my arms. Cant wait.

Monday 8th August

Christopher slept till 2pm. That's not a good sign, I start to worry a little. His nurse for the day thinks it might be a combination of all the drugs he's on and reassures me not to worry.
When he eventually wakes, he's in such pain he's shouting out and crying. then he starts turning blue and I start to panic. They give him morphine and put him on oxygen, which he's been on ever since. They say this sometimes happens when the chest drains have been in a while. They start to rub up against your lungs and it can be very painful. This wont get any better until they're removed, so their going to keep him on morphine for now. Gosh it all gave me a fright, I thought something awful was going to happen to him, he was in such pain. Cant wait for tomorrow when he goes back to theatre and we get some answers. They might even remove his drains while he's there.
It's been so hard on all of us. Chris hasn't been back to work yet because every week Christopher has had some kind of surgery and we don't know if we're coming or going. Everyday something happens and it's usually a biggie.

Sunday 7th August

I need some night nurse! The combination of noisy neighbours and stress is keeping me up all night.
When Chris and the girls come to visit, Christopher is very exited and thinks he can manage a short walk. With his drains in a trolley we make our way over to McDonald House for ten minutes.The best 10 minutes of our lives xx

Saturday 6th August

The wonderful Wilkinson family came to visit again today, it's lovely getting visitors and it takes your mind off things for a short time.
I start to cry as Christopher sings Florence & The Machine, you've got the love, to me. Makes everything worth while. I love my ickle man, he's a legend!

Friday 5th August

Poop! We've just been informed that Christopher is second on the surgery list on Tuesday. That will be the fourth time in four weeks that he's having some kind of surgery. It's getting harder and harder every time. They're talking about asking the ward counselor to come and talk to Christopher. He's been through so much, he's now starting to fight everything that's happening.

Thursday 4th August

Well, just complained at Mc House reception, they are lovely and they totally understand. Their going to send someone to tell my neighbours and they've reassured me that they don't tolerate that kind of behavior. Feel really low and crappy all day because I've not had much sleep. It's so hard at times trying to stay cheery and keep your head above water. We miss home so much. Home is definitely where our heart is!

Wednesday 3rd August

Three weeks today the surgeons at Alder Hey Children's hospital (the best hospital in the world) gave our precious son his life back. We're still here as Christopher is making a slow recovery because of all the complications he's had. I'm so glad that we never went home as we were nearly discharged a few times, we would of had to be re-admitted and that would of been awful.
I would like to say I brought a little boy in and I'm going to be taking a man home. Christopher has got a top 5 nurses list and has fallen in love with one of them. No really!
All the doctors, nurses and consultants are really looking after all of us, really well. They sneak cake in for us and three of them have even brought us DVD's in to watch, or maybe that's because they're fed up with hearing Gavin & Stacey! We love all our Alder Hey Angels very much.
Oooops it's happened once again, it looks like Christopher has to go back to theatre for some investigations. They're going to wait until next Tuesday though. They want to see if his chest drains will stop draining first. There still draining massive amounts all the time :(
The other thing that's getting me down is that I'm now living next to the noisy neighbour from 'HELL'. Some people are so selfish, we're all here in the same boat looking after are poorly children, but a few think there on their own and carry on all through the night. First thing in the morning I'm complaining. I so need my sleep at the moment, it's just not funny anymore!

Sunday 30th July

Nothing to report today, which is actually a relief after all the bad news we've had lately.
Alex on the other hand has just rang me to say she's just won the first day of this big golf comp she's in and she played to a handy cap of 10, woohoo. We could do with some good family news.

Friday 29th July

What will today bring, I wonder??!! Christopher had another bad day yesterday. I've been here since 7am and all I can say is my ickle man has a very determined look on his face.
Ooops spoke to soon, ward round just been and it looks like we might be here for some time :(
Christopher's consultant has just been to see us and has said he thinks Christopher has a DVT in his swollen leg, he's on blood thinners and he's also been measured up for Ted stockings. He's just been for his second scan on it, but because it's so swollen they cant pick anything up, so they don't know as to what extent it is.
We look a right pair in our matching Ted stockings, I'm still wearing mine since my operation in April because my legs are still very swollen and sore. There all telling us to move on them but for Christopher it's really painful and he also has to carry his drains with him, you just don't know if you're coming or going, everyone tells you something different.
Daddy made Christopher some pasta to have for tea tonight, he's so fed up with the hospital food, he's not eating much at all. When Daddy and the girls go home, we snuggle up with popcorn and a Christmas movie, who says we cant still have our Friday night movie. Since being in hospital we've watched every Christmas movie going, Christopher has discovered Friends Christmas DVD and he absolutely loves the Gavin & Stacey Christmas special. It's become a bit of a joke on the ward the way all you can hear is the theme tune for Gavin & Stacey, even through the night lol.
Through all the time we've been here I've been truly touched by all the lovely, warm support of all the wonderful people we know. We've had so many messages, cards & presents. Today when Daddy came he brought with him a parcel from home that one of Christopher's very kind friends had dropped off. It was a big bundle of his own WWE wrestlers that he thought Christopher would like, how amazing that a little boy can give away his own toys to cheer up his poorly friend . That's the amazing part of this kind of experience. Thank you everyone, we'll never foget what everyone's done.

Tuesday 26th July

Christopher is still very swollen and is struggling moving around. His consultant has decided to take him back to theatre and put another two chest drains in around his lungs. We're both sat here and Christopher is once again Nil By Mouth! Hopefully this will sort all his problems out and this nightmare might be over soon and we'll be able to go home. After he comes back from theatre we're told that they had drained off just under a litre of fluid from each lung, another massive amount no wonder Christopher is so bloated . I just cant believe that he had nearly 3 litres in his chest, I just knew something was wrong.  As the day goes on and Christopher is feeling more awake he tells me he can breath better, poor little man he's been through so much in such a short period of time. aw bless.

Sunday 24th July

Christopher's very exited today. I've just had a text and our first visitors are on there way. All the lovely Wilkinson Family. It's been great seeing friends for the first time in such a long time. It was especially good because Chris and the girls couldn't visit today and Sundays are such a slow day on a hospital ward.

Saturday 23th July

We're just waiting for some more test results to come back. His consultant thinks he may have some liver damage after everything he's been though. I'm beside myself, it seems nothing is going right.
Then just like that it can all change again. The good news of the day is, because of Christopher's swinging INR levels they've decided to take him off Warferin, whoop whoop. Never have I been so relieved. Have been thinking about Warferin a lot lately and because there's nothing on paper to say its better for him, if this hadn't have happened then we would of fought the hospitals decision, we feel that strongly about it. Christopher and I actually cried like babies when the doctor came to tell us. I feel like a pressure cooker has just been released. This is what I class as a mini miracle!


Thurday 21st July

Christopher is going back to theatre, there's been loads of pa-lava with his bloods etc this morning, so his operation was delayed for a while. Think I've just hit the wall, mentally. It's so hard seeing your baby suffer like this and not be able to help in any way. We've been told that the fluid collection can be one of the complications with this type of surgery and it can re-collect at anytime even when we go home, bummer! They even have to re-admit some children after they go home because of this.
We pick Christopher up from recovery after his surgery and we're told they've only put one drain in around his heart.  It's because when they entered his chest, fluid spurted out all over the theatre floor, so I think they think a lot of it is out now. There was nearly a litre, that's a massive amount, very dangerous amount. They certainly didn't expect that and it's left everyone very shocked. Anyway Christopher is made up he's only had one drain put in. So are we, but I am slightly concerned that they didn't put three in because I've got a funny feeling about this!

Wednesday 20th July

Today started off steady. Christopher is still 'GUTTED' he can no longer play football :(  Gosh, how things can change so quickly! This afternoon Christopher has had another echo and he now has a worrying amount of fluid around his heart & lungs. Just had two consultants checking him over for a DVT in his swollen leg. I'm really upset, they're talking about talking him back to theatre! Yes they've decided, he's going to have more surgery. He's going to have three more drains put into his chest to drain the fluid that's collected around his heart & lungs. If left it could be very dangerous. I knew I shouldn't of got out of bed today! I'm feeling so terrified right now, he's detereated and is quite poorly and very swollen right now. We need this nightmare to be over! Now they've decided Christopher cant go to theatre today as his INR levels are still very high. They've planned it for tomorrow now. He's having a scan on his leg for a DVT at the moment. He's so brave and so upset right now. he's a star, I feel helpless!

Tuesday 19th July

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!

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.

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.

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!