We wish you a Happy Christmas....

What can I say time is flying!! James went to the Imunology Doctor Nicholas Brodzsky last week. He tried to show me on a picture what is wrong with James immunesystem. One "road" is wrong where the bloodcells do not go the proper way, then he has found something strange, the tests says everything is fine the second way but the results does not. There could be a lack of a small protein on the MBL cell, if there is then James is the first in Sweden for it to be discovered on! I asked him if James will recive a diploma in that case ;O). I told him then it is not from Sweden, and Nicholas just what I was about to say it is probably from England, thank the Lord for doctors with a great sense of humour!! Anyways thankfully it is nothing dangerous, it would just explain things why James is ill as he is on and off. Gammaglobin and antibiotics will help him with the virus infections.We will have the results in the begining of next year.

We have been working with out sitting room but we have now realized it will not be finished in time. So hopefully for New Years!

Jamed has had a temperature on and off but that is how it is, fo the moment he is eating fine, he was sick yesterday big time in the evening but not as much as it can be.

My Cousin Beccca and her youngest Izabella came over for fika one day this week, Becca had made gorgeous Saffron Rolls, she brought us some sparkly white from their family to us *how sweet*! Izabella is the most sweetest girl and James was very interested, I was mostly worried she would end up with a toy over her head since James is not the gentlest now a days. But it went fine! Lovely to see my cousing again, unfortuanely we dont see eachother as much as we could , because of tiiiimmeeee!

Colin, Timothy and Marten have been making Christmas Chocolate this morning.Then we took down the small tree from upstairs and change it to the big one since we now will not celebrate Christmas in our sitting room.

The weather outside is frightning...da da da dada

We finally took the picture, yeeeiii!! Rudolph, Santa bandits, the Grinch, Star boy and the Angel in the family enjoyed it as well, it is a nice family tradition. Thank you Lorraine and Andy for your help driving around to Mother cares to find a Snowman suit for James!!

James has been sick/ill on and off since we came back from England. Two Fridays ago James came down with high fever and vomited all weekend (more than usual) so I was stand by to take him to the hospital, but I kept my head cool and thankfully it was never necessary. Thanks to the Mac Key we could feed him slowly directly to his tummy. Neville, Colin and Elliott became ill later the next week as well, poor boys. I was sure it was stomach flu James was coming down with, but it wasn't then we would have been in hospital after some hours. The slightest James goes down in his health he stops eating and vomits, just how he reacts. After about 5 days James was better but then he started coughing a lot instead and of course he did not eat much so he needed to be connected up. Now he has a bad cold and runny nose and eating so and so. On Tuesday he is finally going to see the Immunology Doctor Nicholai for the first time, after James and I are going up to Ward 67 to wish the staff all happy Christmas!!

Oh forgot the most important news!!! Filip the boy who had two heart transplants; IS AT HOME DOING GREAT!! Could it be a better Christmas!!?? Miracles happen and we should all be grateful for having our closest around!!

Finally the wallpaper is down from the walls in the living room so we are getting there. At least we will have a fresh sitting room for Christmas :O)!! I am really looking forward to spend Christmas Eve with Nigel, Timothy and James and at Christmas Day the whole family is gathered.

Christmas shopping is soon all finished here I have been wrapping presents all day, all those Father Christmas cant bring, he needs some help poor old man bringing pastels to all the children around the world...

Jingle bells, jingle bells :O)

Last years photo

Time is flying, it is soon Christmas and our house looks like a bomb went off. We are ripping down wallpaper from the walls in living room, bedroom and sorting out wardrobes for us. Like you don't have enough when you have 8 lovely children to buy Christmas presents for ;O).

We will have a nice quiet Christmas at home, just enjoying seeing the children's sparkly eyes!! Christmas Eve M, S and E are going to their mothers and C, N and E are going to their Dad. Timothy and James are spending Christmas Eve with their Mummy and Daddy. Christmas Day is the greatest day for all of us when the whole family is together .O)!!

On Christmas Eve we are having, julmust (Christmas drink), spiced herring, eggs, smoked ham, mustard, brown cabbage, salmon in different variations, meatballs and prince sausages (small ones), ris ala´malta (Christmas rice porridge with whipped cream and strawberry jam. Lots of chocolates and nuts. Christmas Day; TURKEY!! :OP small, round, green cabbage (forgot their name now), roasted potatoes, mash, gravy, Yorkshire pudding, cranberry's and a pudding after. YUMMY YUMMY. Those days I will gain what i have lost lately ;O). I am proud to say I have lost 8 pounds in 4 weeks, weeehi!! but then I have 14 pounds left to lose before I am happy. I will start working out at a gym soon as well.

James is doing alright, this morning i thought he had come down with the tummy bug, but so far it is ok :O). He is a pain in the neck now ;O), blimey I am spoiled he has sat still for so long and now suddenly he moves about :O). He is gorgeous!!!

Today we are sorting out the annual Christmas photo, thanks to my best friend Lorraine, my Irish girlfriend ;O) James is going to wear something special.

Merry Christmas!!

James has been playing with Oskar!!

We went off early today in the morning, walked down through town to the bakery, bought some rolls and then walked to see my friend Ida and her 9 months old son Oskar. We had a very nice chat, but time flied and it was time to walk back and pick up Neville at 14.00 :O(.

Last weekend Nigel started in the newly started Brassband ÖBB. It was two full working days of playing. I was home with 8 and tried to pull or scrape down the wallpaper from the walls so we can redecorate and paint. It was a nice weekend though, mostly because I saw Nigel being happy over the new band which keeps a very high standard and high standard pieces. It has always been his dream so I support it, of course. Nigel will continue in MBB as well though :O).

The whole weekend it snowed so the children had a blast in the snow and made a snow man. They rolled a gigantic snowball all the way from the playground and back to the house, where they realized we have slope up to the house. Malin the female hero wanted to help them out, blimey it was heavy!!!!!! To the childrens delight my big toe first became stuck under the huge snowball, it was impossible not to scream :O), then my little finger was trapped between the car and the gigantic snowball, was impossible not to scream. The children owed me big time!! ;O)

Frosty was soon up in the front yard, with a scarf and a carrot nose as he should have. Except for later Timothy and Mårten used another carrot for a willy, are you surprised not :O), after all they spend too much time with me ;O), hahahahaha.

Pooring down-James´s fourth vaccination this week

Nigel was home for a while in the morning and tried to sort out the winter tyres. James, Neville and I walked as usual 8.45 to dagis (daycare centre). Of course as soon as I put my head outside the door it started poring down. It was quite windy as well, a real miserable day. Poor Neville was soaked when we finally reached dagis. James had a blast, his tongue went in and out trying to catch the raindrops. The little tinker :O).

James has started to Say yes now, well as long as Daddy is not around, he refuses to say it, "I wont let him hear it because I know he wants to".

I walked quickly back home and snuggled up for a bit in the sofa. At 10.30 James and I was off again to the local Child nurse for James to be weighed and have a vaccination shot. James started complaining when he saw what she was preparing, a bit when he had the shot, but no crying being very upset, he is such a good boy :O)! Poor boy he is used to it. I thought he had lot a bit of weight but I was not sure.Going back home which is a fair walk I passed by Neville dagis on the way so went in and took him with me home again. Then it was 12.45, so we went home and I was deadbeat after the walk in the horrible weather. The big boys came home, Mårten, Elliott and Timothy.Timothy insisted on cooked tea, honestly it was a day they usually would have had to settle with sandwiches, porridge or cereals. "I said fine if you make the pancakes, with some help he did a marvelous job".

Yesterday Mårten and Colin made sausages with pasta. Since they enjoy it, wonderful for me :O). It is not like I sit down in the sofa and relaxes hahhahaha I run around like a headless hen fixing other things, see so the children don't hurt themselves during the cooking, give them tips and praise, making sure that James is not electrocuting himself or breaks anything, he is on the move now on his bum :O), I give one child an evil eye for him/her to behave, helping someone else with whatever. It is lots of fun though :O).

Today I ordered medicine for James and talked to Dr El Haddi. His Swedish is a bit hard to understand and he asked if it was OK to speak English, we've done that before and he prefers it anyways. He is a sweet, always with a big smile, humble doctor, the man who actually diagnosed James. So he is special to both Nigel and I.

My pappa called today from the Chemical tank (ship) he is working on, they are going back and forth to Germany and Holland for the moment so he is happy, closer to home for Christmas. I mentioned to him that the whole family is going for the Christmas concert this year and pappa asked if he could come and watch, so that will be very nice :O). Tickets are ordered and seats (yes a whole row:O) is reserved for us. We all have to see and hear Nigel play Ukulele!!!!!!!!!! Oh my gravy!! How will it be possible for me not to pee my knickers of laughter??? Anyways, I really look forward to it and it is going to be interesting since it is called "Christmas around the world". I love to see my gorgeous husband play, I am so proud of him :O)!! We soon have our own rockband in this house. Mårten and Elliott are jamming away together on bass (M) and Flugelhorn (E). Soon Timothy will start and play the drums and Colin keyboard. I am looking forward to it (yes I am nuts), to hear them play together.

Nigel is out by the cars again and all the children are sound asleep, WWEEEEIIIIHHH!! Because I am exhausted today, and a hot cup of proper English tea is calling :O). Ta ta...

Happy Birthday in Heaven Heartbrother!!-Vaccinations-Filip

We went to the hospital but first to the pharmacy to pick up James vaccination. Thankfully we have a lot of tax-payers in this country and a max cost you pay for medicine. James vaccination (for one a month for 6 times) cost 13.000kr!! Anyways, we were late because there were more people than I expected in the morning. James and I were greeted as royals as usual ;O). James was supposed to have two injections with the vaccine I picked up, for the RS-virus and another injection for Pneumonia. So three injections in total. I asked the nurse Birgitta nicely :O) if she thought it would be possible for James to have a sedative medicine so it was not so traumatising for him , three injections of painful vaccine is nothing to joke about. Birgitta went to ask a doctor, and it was just fine, I was very grateful!!! Dr El Haddi is the hero today :O). We went finally to Filip to give him his Teletubby James bought for him in England and we adults had a nice chat, Filips Mum and Dad and I of course. James was still groggy after the sedatives and he cried so Filip started crying, a chain reaction. Poor Filip and James. But then they played for a bit again.
In between I went to little Heartbrothers grave with a little flower,

James was sound a sleep in the pushchair. Many thoughts to Heartbrothers parent today!!! I had not seen his gravestone before since it takes some time to receive after the order, it is so BEAUTIFUL with a big heart cut out in it. I am so grateful I was able to meet Heartbrother, seeing his great big smile meant the world to me and still does!!! Ahh bless him, he will always have a special place in my heart, and his outstanding parents!!!

I went up to the ward again to have James cleared from any symptoms because of the sedative medicine and vaccines, off we went home to pick up brothers and sisters.

james was not so happy during the evening, he was in a lot of pain from the injections he had in both his legs.

Finally better from infection-Izabellas christening

James is starting to eat a bit again. Up to yesterday he was coughing a lot and the food bounced up again. James has been fed by the pump, whitch is pain in the neck now when he is moving around pulling everything including his tube attached to his tummy. I don´t blame him!
Today we went up early because James cousin Izabella was Christened today at 9.30. I was nervous that James would start vomiting on the way to the church.But he did fine, the minister and James held a good speech in church :O). Izabellas christening was beautiful. But for a minute I started thinking about those who wants to but never have their children Christened because something goes wrong and their children don't make it for some reason. I pushed those thoughts away quickly, this was a very happy day!
It was lovely to see my aunt Anki and all the other relatives and friends again, time goes to fast but hopefully I will see my aunt soon again.
My cousin Lina and I took photos of her twin daughters Nova,Vilda and James. Of course he could not keep his hands off for long ;O), it starts early, but then he was quite popular with the girls as well of course the little charmer.

November 3rd-Home-Emil & Sofias birthday-Nigel and I 2 years :O)

James was really bad on they way, home. He still did not have any fever but his eyes were really horribly infected and he vomited and coughed a lot. Poor little man :O). We arrived home at approx 3.00 in the morning. I was really worried for James and he did not sleep much.He sounded chesty and he vomited. But I could hear it was from his upper airways some of it anyways, we have been there before. He becomes totally clammed up and he has problems clearing it. So of course he stops eating whatsoever, if he eats some it bounces up again. I went with James to the hospital in the morning. Of course the red carpet was rolled out for him ;O).
The doctor confirmed it was upper airways, a massive eye infection and he said he is probably infected on his upper chest as well and there is a risk it will move down to his lower airways , so he prescribed James a horse dose of antibiotics.Poor little man I knew what it will do to his tummy :O(.
So the pharmacy was the next visit and then home. We went home and i started packing up Emil and Sofia's presents and started wrapping them up. At 16.00 they came home and could have them. They had a lovely watch each from Nana and Grandad and money from Nan. My mum had fixed bedding's for them, Bratz and Spiderman. We had a nice but a very tired evening, we would celebrate Emil and Sofia further the day after.

30/10-3/11 England

Time went fast as we knew it would. James and his brothers were able to spend some quality time with their Nana and Grandad and they had quality time with their grandchildren. Since they live in a different country it is not often they are able to see each other. It was the main reason why the children came with us, though it was supposed to be a shopping trip (for Christmas :O), to see Nana, our friends Lorraine and Andy and Mum and Dad. We knew though that we would have plenty of time alone with Mum and Dad around Christmas which we very much looked forward too.
James had already started eating badly before we left and it was purely out of precaution I packed James´s pump etc. James was whiny, poor little man. I checked his temperature many times and I was surprised it was normal.
Nan had an eye operation whilst we where there (the Thursday)and everything went fine, she is one tough lady thankfully :O). Her 92nd birthday was the day after (Friday) so we (after mad shopping waiting in traffic ques) had the opportunity to go over to congratulate her and see Uncle Les (Nigel´s uncle:O) and Kath as well. In he evening Mum and Dad were kind enough to babysit the children so we could have the possibility to spend an evening with our friends. It was the very first time we spent an evening away without the children, so it was lovely and about time :O).
We have gone through a lot and are still going through much, that is why I have contact with other mothers with heart children. Only they know how it is. Most of them say the same, they have all been a victim of others feelings and ignorance. Within and outside family. People who have no idea and never will know how it is for a heart child family. We all have different life experiences and how we look on life. Life is too short for us anyways, we have eight children to concentrate on (one with a CHD) and we never know when any of our tickets are up, in a matter of speaking. We could all have been wiped out in a car accident on our way from England. Forbidden thoughts for many, it will not happen, well it does happen and we don't take life for granted anymore, noone should, life is too short! We don't waste our lives fooling around with pathetic little things. We are grateful for every day we have with our children , yet again life is too SHORT! Nigel´s and my love conquers all bumps in our lives, thankfully :O).

The last evening in England Mum and Dad had prepared a lovely tea with Cumberlands and Yorkshire pudding, yummi :O). James was going worse and Istarted to feel very stressed for him. I knew we would drive for loooong hours back to Sweden, since we were travelling by day.

We did our packing, I put James to bed and i popped over to Lorraine to say sad good byes :O(, but see you soon again :O) whilst Nigel was packing the car. Yes I left my Project Manager with his project :O). I arrived back home at 23.00 and tried to go to sleep, but I could not sleep all night and I was worried about James he was not sounding to well and very chesty. I thought to my self "oh, my gravy" it will be a long car trip home and maybe passing by a hospital.

29th of October-Elliotts birthday-England-New Heart!!

Finally the day had arrived for our trip to England. The ones going; Nigel,Neville, Mårten, Colin, James and I.Originally it were only Nigel, James and I going by plane but it was so expensive we could rather take the car with more children to visit Nana and Grandad and so we could do some Christmas shopping!! We had celebrated Elliott the day before so he was not neglected ;O).
Nigel had of course to work so I was the one handling the packing for all the children, not to say the least James who could use his own truck ;O).

Every morning since we had left the hospital I gave a little pray that Filip would have his new heart. I opened Outlook and there was an email from another "heartchild mother". She wrote that she had been smsed that Filip had his new heart during that night!!!!!!!!!!!!!!!. What a happy day!! It was impossible to hold my tears back. I logged in to Filips homepage, but of course Malin had not had the time to update the website. I could not hold myself I had to ask how the prince was doing, so I called up Malin. Congratulating, happy crying and kisses to Filip from us.HE WAS DOING MARVEOUSLY!!! What a releif!!!! It was with a lot of happiness we went off in the car to England. The children and us had looked forward to it very much!!

We were on the road at 16.00. All the kids were great! Obviosuly, when we came to the bridge over to Denmark Neville asked if we were at Nana and Grandads now :O). James slept most of the way, watched Teletubbies and played with his toys. Colin and Mårten Played Nintendo DS and Neville was looking excited out the window. A wee stop in Holland. The kids were deeply asleep in the back. Nigel and I shifted driving. Of course I had to drive the last way through Belgium-France to Calaise. Blimming heck!! Straight on 150km and then straight again 80km etc. Mårten was a life saver who was sitiing the front with me , hahahha. He was jibbi jabbing as usual. Many lanes and very tight ones, I was happy when we reached the train for the Eurotunnel. We had to wait an hour for the next train and it was a good oppurtunity for another wee moment and nappy change :O).Colin and Neville were very excited going by car on a train.
It was now the next day about 04.00.

Heartcat 15th of October

Everything was fine with James and he could go home. Before we went home we popped in to Malin and Filip.We promised to come and see them soon, they have no idea how long it will take for Filip to have his new heart. It was with heavy steps I left Malin and Filip behind at the hospital. You wish you just could give them a heart so their lifes could proceed as normal at home, finally. They had been there since May.http://www.filip.s.dinstudio.se/

Heartcat 14th of October

Blimey, Mummy took me up and went straight to a warm bath. She scrubbed me with some strong soap spunge, then she dried me and put on this Emla cream on my hands (with Timothys help because Daddy was too out of it :O)and feet. It was 6.00 in the morning and I was gobsmacked!! Anyways it seemed to be an exciting day. Mummy took me out to the car, packed in all our things and we went off to the hospital after some cuddles with Daddy.

At the hospital we went in to our room and waited for the staff to give me some sedatives. When they arrived (they had made sure my dose was big enough)they gave me it and waited.
Mummy- We took out James to the x-ray unit in his cot 08.10. James was drunk talking and screaming on the way to the heratcat/x-eay unit. We had many giggles the staff and I. When we arrived Dr Olof and the other staff greeted us and I put James down on the"bed". A gave James a kiss on his forehead and said I love you and then his face was with the nurse who put a mask over his face. I held his hand and James started licking inside the mask and then he slept. I said thankyou and went out with the 67staff. Thankfully it i nothing that upsets me, leaving James with them totally sedated. I can relax, being my silly self. Otherwise I would have refused to go through the procedure without Nigel by my side. If it had been an emergency and I had for some reason had to be rushed to surgery, then it is a totaly different matter!

I went to 67 to have breakfast, watched tv and then went in to Malin and Filip.We had a very nice time.Filip is a real charmer, bless is heart.When it came to 11.00 I asked the staff (I had been told 2 hours totally)if it was normal for it to last, I started to be a little worried. They said it was ok and the time could be 12.00 before he was finnished.12.40 the call came and I rushed up to the preop unit.

James was sound asleep. I noticed the doctor had still not been able to put a needle in James´s hand he had to put it on his head. He had a heavy pressure on his groin where they had made the enterance by the catheter and the other place was his on his neck, but there they could put stitches. James was worried and moved around and he started leaking from the manchet in his groin. The nurse paniced and the ass nurse calmed her (blimey).
The nurse had probaly not worked there for long. Anyways we were there for about 3 hours.Some time after that James quickly pulled out the needle from his head and it looked like Stockholms bloodbath for a while, blood everywhere and some cleaning of James was needed.

Dr Sven came to give the results and everything was fine, no worries with high pressure or anyting!!!The the staff came and we rolled James cot back to his room. James quickly wanted to come out from his cot, so i put him in a push chair and we went in to Malin and Filip for a while. Malin blew soapbubbles again, wwweeehii James thought it was lot if fun!!

Later James stayed to entertain the staff whilst I popped down and bought something for me to have for tea.

James was doing fine for the rest of the evening.I knew we could go home again the next day.

Heartcat 13th of October 2008

We started off early in the morning with x-ray of heart and lungs. Mummy and I went up to ward 67. Nurse Rebecca signed me in. Then it was time for bloodtests and to put in a preop needle. First some Emla (sedative cream) was put on my hands and feet. The nurse asked Mummy if they ususally put in the needle and she said "no usually Anastehic doctors since it is very tricky and the doctors usually complains as well :O)!. Well Rebecka wanted to try so Mummy said yes because I am a bigger boy now and it might be easier, and we dont want to bother the doctors if not necessary. I could would not feel much but I became very cross when they did not want give me my hand or foot back when I wanted it!!!To be held is still not my favourite :O)!!! It ended out with three attempts, no needle anywhere me very cross and three needles flying in the room. Who said Pippi Longstocking is strong, noone messes with me!! It is a miracle neither of us ended up with a thigh punctured by a needle. Sweet nurse gave up and said that they would give me sedatives and then go up to Anastethic nurse at the theater. Mummy took a picture of Rebecka and I.

I dont like when she is holding my hands in a steady grip, but she is sweet otherwise :O).New Emla was put on again and we had to wait 2 hours for it to work. They did not even let me play around with the cream!


Time for EKG and blodpressure measuring. NOT POPULAR!! Well the EKG is because of all the cords, like spagetthi, much appreciated I was allowed to play with them after. But then they wanted to take my bloodpressure. What can I say, I promise it must have been very high on me, and the others in the room and the rest of the ward. Angry as a bee and a totally BLUE arm whilst trying. It was painful :O(!!No result of the EKG came out, they gave up and Mummy and I could cuddle for a while. When we came out we saw the room just across, there was mamma Malin and her son Filip. Mummy and I have wanted to see them for a long time. Mummy waved and said (I was screaming my head off :O), "I will come around later!!.

Then it was time to see my doctor Peter Munkhammar. They weighed me (8.8kg) and mesured me (76cm). I was laying on my Mummy and I watched Teletubbies, wow it was funny!! Mummy and the doctor talked about books and Peter gave Mummy a book tip, books by Susan Howatch. Anyways the doctor was happy with my heart, most importantly :O). Then they closed Teletubbies!!!!! How rude! I was not happy about that, but Mummy said no :O(.

Then we had us a bite to eat (well I dont take many bites so I had my bottle :O). I had a little nap. We also went into Malin adn Filips room. Filip is two months older than me and he was connected up to a Berlinheart. Filip had a new heart but it was tired and did not work properly. So now he was waiting for another heart. But he was very happy anyways!! We had lots of fun looking at eachother, Filips mamma Malin blowed soapbubbles, lots of fun!! Then we watched a bit of Telletubbies. Wow Filip loved Tubbies as well. We said goodbyes and promised to pop by the day after.

They gave me sedatives but I was not very tired at all. Then they started to try and put needles everywhere. Poor me I could even feel my Mummy become stressed. The nurse stepped at side and the Anastethic doctor Lis tried instead with no success. She said turned to the anastethic nurse "next time he better have sedatives"the nurse said " this is with sedatives, too low dose then". Blimey I thought yeah dont mess with me, I dont want a needle! They decided that I could sleep with the mask then the doctor could put in a needle when I was a sleep tomorrow. Fine by Mummy and "FINE BY ME"!!

The Anatsethic doctor Olof came around to have the normal "preop" info.
Since we have done this many times before it took a minute.

It was nice to come home to Daddy and brothers again. I had lots of needle marks everywhere and Daddy felt sorry for me so I had lots of kisses. xxxxx

I can clap my hands...

Woohoo! Now the little man can clap his hands. Before it looked like the bird-dance, a combination between clapping his hands and waving both of them at the same time :O).

Dr Milad called yesterday and asked if we possibly could come in with James starting Monday for the heart catherization, they had a glap. It suited us fine, and it will be over and done with, phew :O). Thankfully I enjoy the staff working there, they are really nice :O).

Yesterday we went to Höganäs so the boys could meet up with their old dagis/nursery. It has been 1,5 year passing by. I have missed that dagis so much and the staff! All my four oldest have gone there and it was strange to change to another place. It was really, really nice to show off James as well :O). It has never worked before to bring in James to dagis and all the hospital trips, we have lived a different life. James was all happy for the attention, Neville and Colin were very pleased of course to see teacher Minna again. We are going back before Christmas and hopefully meeting up with more teachers. James is thanking for lovely cookies Minna served him which he spreaded around like a sprinkler system :O).

I am not as much at the hospital anymore, thankfully and hopefully it continues in that way! I am following other parents fight from a distant though, with same diagnosis or similar ones. They are on my mind everyday and I pray for their little supermans or supergirls, they are true little fighters!!
xxx

A "lovely" season....

Well, being in the hospital for a long time after the third stage is very hard as well of course. But if James will not have any complications (which are VERY rare) after the op I will be very grateful!! Then there will of course be a struggle when James is hooked up to drainage pump (since they can start collecting a lot of fluid around their heart and lungs) on and off for weeks or months, it will be tough and we will just want to go home and continue our lifes. Of course there will be a contstant worry for James and his siblings back home. But we are lucky, we live so close to the hospital. There are many famillies who needs to be seperated when they have a older brother/sister who goes to school somewhere else in the country. So for us it is "easy" considering.

We have been spoiled lately, James has just been over night ones since before the summer! So I have "forgot" a bit how it is being "locked" up in there :O). James has started coughing this week. It has clearly affected me. Deep down I remmeber how it was when James had his lunginfection the last time and he had apnés. It did not feel "comfortable" to have him stop breathing for long periods and I had to push him to have him start breathing again. I will never get away from those feelings and visions. But cross your fingers,James has had bad colour (yesterday) but no fever, that is a good sign of course! So as long as he stays like this and not go worse James can win this time again without hospitalisation.
It is amazing when I think back everything he has gone through, and we. James was on his back in a bed inside a see through hood for two weeks. Twice he was so bad he was an inch from PICU. Everyone is amazed how happy go lucky he is, always close to smile and gone through so much. That is children for you! They are absolutely amazing, they take it as it comes and things very naturally. Look at all James´s siblings. They are all heroes :O). We have been very causious about how much they should know. We always answer questions honestly without adding more or less, we inform them about the most necessary as children they take it as it comes. When a child starts worrying much, many times it is because we as adults put our worries and emotions on their plate. Which is way too much responsibillity for a child to bare, adult problems. Children needs to children :O). In the same time they should not be protected from life, where it is not always fair,very sad and tradgic sometimes. It is a balance, like most things.
We are hoping for a trip to England before James´s heartcat to see Nan, Mum, Dad and our lovely funny friends Lorraine and Andy with family :O) etc.
It is a "lovely" season now when the infections starts..
Hearthuggies to all of you.....

My First Birthday

Please visit my website to see the photos http://jamesward.co.nr/

A long time ago...

Hallo,a long time a go I wrote in this blogg now which is a shame. But time has flown, not only to mention over summer containing; dop at Stadionkyrkan (thankyou Malmö Brassband and all who put down love, time and effort to help us during the day!!), a lovely trip to UK for James dedication in Brightlingsea, buying a house, selling our old house which we had a burglary in and not even mentioning moving (thankyou Mattias and Pia for all your help) with eight children.

James had a rough summer when it came to his food intake and vomiting so he had been coupled up to the pump most of the time. Still he has developed and can now sit up, and he looks adorable of course :O).

James over the last three weeks has been eating by himself and has been able to have small pieces (not only puréd food) that he munges on. It goes up and down but he has done remarkingly well considering he has a cold.

We had happy news from the Immonology doctor and they have now seen that James does not have an immunesystem failure, which was lovely to hear! Otherwise we would have been in and out from the hospital with him having Pneumonia, and that we have not thank God.

One day James was vomiting heavely and did not keep anything down (two weeks ago) he was then admitted to the hospital for a day with a drip. Of course it was the same day we were supposed to go to Höganäs and visit the old nursery with Neville and Colin. Suddenly the next day James started eating by himself again. Our little man is a mysterious little man..... :O)

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James is worth more than his weight in gold :o) !!!!!!

KING SUNE- Nr 1 card. Surgeon

Day before the op - 25th of March

I was nervous. Not because of the operation, I was nervous the operation would be canceled yet again! I have accepted everything with James condition. I have had very brief thoughts like a child “I don’t want to”!! Thinking of stomping my foot. I have all my faith to Chief Surgeon Sune Johansson and Surgeon Torsten Malm whom were James surgeons, Anesthetic Doctor Ann-Christin Olsson, Anesthetic Nurse Chatarina (Kattis) and with the rest of the brilliant staffs of operation nurses etc, which I unfortunately don’t know the name of at this moment in time.
James would not survive without another operation more than a couple of months starting with too low oxygen which would give him brain damage at first and slowly die. Harsh but facts, this is why I could not feel sad about the operation more sad if it would be off again. Of course there is always a but, what if? Etc. It is an open sternum heart operation, which there always a risk behind it.
I have my sick jokes and I am happy the staff can be relaxed around me and joke as well. They should know by now I appreciate it. I met a bunch of staff in the corridor including sweet cool Elisabeth. She had joked earlier if James had start to have a high temperature put him on ice. Hahahaha!!!! Of course I put it further, ice, cold packs and when he is cold and blue when Sune will operate him I just tell him it is because he is so badly saturated he has turned cold and blue so he better operate him fastly! Hahahhaha!! We had a good laugh about it. When I mentioned it to the doctors later they looked like they did not dare to laugh. I bet they are not used to Mums being able to distance themselves and them and to joke about their worries. My way to handle things, to joke, have fun and not dig myself down which is to no advantage for anyone. Of course, if we had had sad new about James negative news I would be in a total state of mind!!!! I had a conversation with a dear friend of mine who has had a total different, very sad and worrying news about her son. If I had been in her shoes I would not be able to joke and have a smile on my face !! We are extremely lucky and there is a plan for James heart condition and everything except for infection has been planned and no heartbreaking news our way. We are very grateful! Don´t take me wrong, I have a bright side, a humor side and of course a very serious side. When I write maybe in sounds like I am only goofing around, of course not :O)!! I adapt to situations. I am pretty outgoing and loud sometimes, so to work in a funeral home as I have thought of before would not work at all, they don’t need someone happy and cherry with a smile from each ear in the reception greeting with HELLO!! No not suitable at all and I would be bored stiff as their clients ;O). Sorry could not help myself :O)!!
James is always very close to a smile and a giggle. We/I have done everything in my power to make James experiences as positive as possible. When I have put down a feeding tube we have had our mad moments and giggles together, I have tried to make it a bit fun not been looking sad on him and made his worries worse to begin with. If I look sad and saying poor you all the time he will be scared to death when he goes in for operation the third time or even mentioning all the checkups and blood tests!! The only way for it to work is that I am not anxious during all of this myself, if I was I think it would be better if someone else took over if it was so bad that James would notice my insecurity. Mummy is worried blimey this must be very dangerous!! Well simple psychology of course :O).
It was very reassuring when Sune came in to inform us about the operation. I call him King Sune!! He and Torsten who operated on James are the BEST of the BEST!! I have heard LUND cardiology unit is classed as number 4-5 in the world!! That is BIG! No wonder we feel as safe as we possibly can.
Sune is a short man with dark hair and is of course very passionate about his work and has both feet on the ground. I admire him very much, we do actually ;O). It was nice to be informed and blimey he makes it sound simple hahahahha! We just rip that off, cut this in half and attach it to this. OK hahaha. Sounded like an kinderegg instruction but is a high class surgery performance. We are lucky there is men/women as professional, skilled and intelligent as Sune. This was the lightest operation for James. Not even close to the danger with the first one. Less than 1% risk for him to die. As little as it can be, a surgeon never says 0%. Sune showed he has two feet on the ground and made us giggle. He had the plastic model heart in his lap and showed us what he would do. He was about to put back the Pulmonary artery back and he could not manage, he said “blimey I don’t know how it is so supposed to be fitted” HAHAAHAHAHHA! We talked a bit more we thanked for the information and we said our goodbyes and he went out the door. A few seconds later we heard a knock on the door and Sune was quickly back in with a smile and he said “ I forgot a piece of the heart here (on the scale), hahahahah I said jokingly "please have a good night sleep tonight Sune" and he went out the door". Nice to meet a worlds best professonal surgeon with self distance :o). Sune has a very calming effect on me, I know if anything would happen James is in the very best of hands and everything has possibly been done for him!! Only that is a HUGE comfort to me!! Even if it wont be a comfort if anything bad happened, thankfully I have no idea how it would feel. I take for granted it will go well for James and I push away the fare of James life being at stake. Frankly it would be more on the stake if he did not go under surgery and that scares the living life out of me. It was not many years ago when James deffinately would not had made it. There are babies today that dont make it whom are diagnosed with HLHS. Unfortuanely not all babies can be saved. There are worse heartconditions than James as well of course, sadly.

Some of the Stars- Jenny Åsa Annie Birgitta Elisabeth och Anneli

Going Home before operation?

The doctors discussed early on the possibility of going home before the operation. We were not keen on that idea, only the thought of the episodes of him loosing colour suddenly on and off in periods at home before, gave me nervous ticks ;o). We thought it was time to draw the line, put our heels down, be stubborn as mules, be a pain in the neck- the bum and everywhere else :o). I empathised to the doctors I would not take James home, without them dragging me out from the hospital. I said Kindly grinding my teeth. No way José! Only the thought of James having another infection in between the op again scared me. His shunt now had stenos is and James would not grow smaller. Time was against him. The doctors agreed with us and we were told by different variations of staff that we had been more than patient (there is several times we could have rushed to the hospital with or without ambulance if we had not kept our head cool) because when James looses colour even for a couple of minutes is not a pretty sight. When something has happened to James I have just called the ward or Elisabeth to check instead of rushing off.. They even said they saw us as one of the “easy families” positive supportive parents. It was really nice to hear of course :O)
After a couple of days a decision of James staying until after the operation was made. I think we have all working groups to thank for that as well. It was a major relief for me/us and I could relax, the nurses were happy as well :o) Very nice to have their support!!!!!!!!


Oxygen support

James had oxygen support right until the operation. He had to begin with, t 7-10 L oxygen and when the operation was on he needed 2,5-3L. We tried to lower it a couple of times with the aim to take him off it. One doctor was very optimistic and wanted to lower the oxygen completely while another doctor did not have it as an immediate goal before the operation. Everything the doctor decides is correct just they have thankfully personalities and personal input on things. You learn how to sort out what they say because you know another doctor might be on the other day and might have another view on things.


Bad days and good days

James had ups and downs depending on which day. He had to have sedatives several times (Cloral Hydrate). In the beginning there were many days when he was in horrible tummy pain because of the penicillin. Colics are bad enough but is not even close to the pain James suffers from when he cant do number two himself and when he is full of air. It is very tormenting for him and for others who sees him. When James becomes upset and starts to cry , his saturation level drops down to the high 50´s % after a while he feels the discomforting feeling of too low saturation and most probably feels sick and dizzy. Then he starts to panic and cries even more which makes the saturation drop further. It all turns out to an evil circle. So during these episodes where it has not been possible to break his panic, they have given James or we have asked for sedatives. First of all we have tried with colon-tube and if it would not help then James has been on sedatives. No need for him to suffer when he can have help.
James has also had days where he has been in panic without tummy pains. When he has pain and starts to cry his saturation level drops. There has been times where we have become worried and some staff. Those times he has been happy as Larry, turned pale, dropped in saturation, became worried because of the low saturation and panicked. It happened three times where he had sedatives to relax and go to sleep. Then his saturation has gone up by him relaxing.


The Nano Shunt and some explinations.

The shunt was not too small as it was and it would not have been for a while thankfully! The Shano shunt was a tube made of Goretex and it was about 6mm in diameter (James). The Shunt was attached to the right Ventricle and went up in a bow shape up to the Pulmonary artery. It is through this Shunt James was able to have some of his blood turning red (oxygenated), where it was pumped up to his lungs then transported back to the ventricle and out to his body through the Aorta. When the blood was pumped up through the shunt to turn red/oxygenated by the lungs it flows back to the ventricle again and is mixed with blood which is blue then blood turns purple, a mix of red and blue blood. So blood which was pumped out the body was purple and not fully oxygenated. This means the blood being pumped up to the lungs was purple as well, some of it had already been to the lungs and some blood came back from Vena cava and needed to be oxygenated again. This is why James had become so ill from Stomach-flu (ex). To keep the pressure going in James ventricle and to make a steady flow James fluid volume had been very important. So stomach-flu was not to prefer. When James fluid level dropped James Ventricle collapsed a bit, this gave it less power, pressure and flow to work with. This made it hard for the heart to oxygenate the blood and to have the power to supply the body with oxygen. The shunt was a narrow road to take, a way of speak and when there is a low flow the blood most probably prefers the simple road; through the wide Aorta straight out to the body, this together makes the blood not purple anymore it makes it bluer and bluer. James shunt had stenos (a layer building up inside and made it narrower) just where the shunt was attached to the Pulmonary Artery, in this part of the shunt the diameter was about 2-3 mm. This happens mostly this moment of time because the Shunt is not going in a straight line, it goes in a bow up to the Pulmonary Artery, this is why “crap” more Easley collects like it did to the buffer by the pulmonary artery.
To give James oxygen when his blood volume was too low made no difference, since it was heart related, nothing wrong with the lungs. The only thing they could do was to put him a glucose-drip, give him blood compensator (Albumin) or blood-plasma to fill out the blood volume. This made James pick up and his saturation raised

. There is some colours to choose of for James when his saturation drops. He becomes either very dark red, almost black, blue or ash grey.The very dark red almost black happen when James is in panic and ill with a bad saturation to start with. The Ash grey, pale and blue happened when James saturation has dropped without being upset. It has happened sometimes. I have not really seen smaller variations in him changing to a bad colour since we are what we call “home-blind” we are use to see him more or less blue.

When James had the Rs-virus he became really sick. James started with throwing up very much in the start so they had to increase his blood-volume with all the three supplements above. James had also major problems with his lungs. They were full of flem which made it harder for his blood to be oxygenated. What I also think )if I understood correctly), James uses a bigger part of his lungs than children with no heart condition to compensate the low saturation a bit (just like him having a lot more red blood-cells than normal to be able to transport as much oxygen as possible) this lowest part of the lungs had also collapsed which made it even harder. This is what they call Atelectasis. The alveolus falls together and stuck together . This is why he had all the inhalation to clear flem, open up airways including the alveolus.



Mum and Dad

We have the very best ; Mum and Dad- Nana and Gran Dad!!! They have been flying back and forth from England as jojos to support us take care of 7 children with excellence and taken care of the houshold.They are really exceptional and there are no words of gratitude and thank you enough!!! Everytime James has supposed to be operated they have rushed over. Mum and Dad have a really good view how the Swedish care works by now. They have been waiting hours with us with a sick James and been extremely supportive!!! We are very LUCKY and the children are very lucky to have such a great Nana and Grand Dad!! They/We love them to death.


DISA

Disa is a very dear true friend of mine. She is always there for me and support me. Disa plays an important role in Timothys life and they are great friends.Timothy visits her every other weekend or when it suits us all. All my children loves Disa, first of all it has been Neville who had contact with Disa when I still lived in Höganäs. Neville was with Disa for the second operation for three days so he did not have to go to daycare and be worried. It was like he had never left and he feels safe and secure with Disa. He had a great time with her those days. Timothy spent two weekends on the trot with her. They are great mates.


My Mother and Father

My mother lives in Norway and has a full time job so it is not easy for her to be around. She has been to the hospital twice to see James though and is supportive over the phone. My father has been taken the boys on and off when he has been at home from sea and supported us that way. We are very grateful for all their support.



Support from Friends

We have a major support from friends via email, sms and website. It means very much to us!!!!! Many have spread the word about James and there have been prayers for James by hundreds of people around the world when James have been ill or operated. Thank you for your thoughts, supports and prayers, it is invaluable!!

The Staff- The stars

*Elisabeth*, our contact nurse is a bright shining star****.She is a huge inspiration to me and she has shown me what a tremendious difference an excellent nurse can be to a patient and parents. She has a big fluffy pink heart, a twinkle in her eyes and a big sense of humor. But she also of course has a deep sensitive and serious side. She is just perfect for her job, she has so much I can learn from her because of her huge amount of experience. It is actually her (and James) who has inspired me (without knowing :o) to study to a nurse. It shows "bad" things happening in your life and meeting new people can have huge positve effect in your life, as it has for me. I have not knowing what to do for years since I put my dreams on the shelf when I bacame ill so I whole new future has appeared for me. I am very grateful!

We are so lucky! We have so much gratitude to the staff. It is nice that we can talk, laugh, giggle, chit chat and joke with each other. For me it means very much! It helps me not feeling lonely in the hospital and to have some kind of social life at the same time. The staff I see as friends and I think it just as important for me to make them feel welcome in to us (our room)as it is for them to welcome us to the hospital. They are all a bright shiny group of stars!!!! Thankyou!!!!!!!!!!!!!!!!!!!!!!!!!!!