30 October 2009. signing in...

James & I was up early this morning. Nigel came home the day before from Stockholm, the rest of the with their respective parents and friends. Nigel had to go to Copenhagen and work, so it was James & I. At 8.30 James had his chest x-rayd after som yummi contrast gueeeee ;O). He did complain a tiny bit but he has the right to complain :O)! How fun is it in the morning to strip off your clothes and put your hands over your head on the side and on your back, poor little man but he was ever so brave as usal, he is made of tough material our Superman :O)!
Going to ward 67 we met Malin S and her son Filip who has had two heart transplants and been connected up to a Berlin Pump in between the hearts, it was lovely to see Filip run around :O)!!!!!! Filip is a proof of how wonderful healthcare we have in Sweden :O) and how lucky we are!!!
We shared some hugs and chatted a bit, then it was time to go up to the ward. Nice to see some well known faces. James hollowed a big helloooooooo and hej hej ;O)! We went in to the examination room for blodtest (from the finger)  James always just giggle everytime they take a drop of blood from his finger. Two fingers it turned out to be. Then it was time for EKG, length (92cm) and weight (10.7kg) and bloodpressure (hehehhe do not remember is it important ;O). During all of this James was splendid :O)!! He giggled, talked and made just one of his warning noises erggghhh sounding like a wrong dial tone :O). UNTIL, the lovely staff started singing loud and clear to him!!! James started screaming & cry all the way from his toes and up, hahahahahahahaah!! The poor staff sropped emediately excusing their horrible (not) singing, hahahahahaaha! Poor girls!

Then it was time for Ultrasound with Dr Gollam (I call him Gollum hheehe), James laid in my lap and watched Bob the builder. He did not cry but he wanted to sit up all the time. The doctor really needed all the pictures, he asked if he could give him a sedative, of course I said (hheheehehe ;O) but it will probably do not do a lot of difference, the docotr did not belive me, James had the maxdose without BIVA assistance.James giggled and thought he life was really funny, but still strong as an ox the doctor gave up, until later on. Then it was time for a laser (!?) test on his arm, because of a research they now do on children having their TCPC done, he had to be still for 45 min, luckily James was a bit tired and with some reading it helped. After, time for ultrasound again with Dr Thomas Higgins (am) and Annika the research nurse.Dr Higgins spoke am to James, did some singing, as he said I was probably more amused about it than James ;O). After some struggle they had all the pictures on the heart they needed originally and from the research.Just one ultrasound on the side of his neck left by the nurse to read the blodflow, thats when James had it!!!WEEEEEEEEEEEEEEEEIIIIIIIIII!! Life was not fun anymore! Afterwards he had a ice lolli, we waited in the ultrasound room for the surgeon.
I was told last week that James original Surgeon Sune Johansson (Cheif) had other things he needed to attend so therefore another surgeon would do it instead, Jens is a really good surgeoun as well of course,  who assisted Sune on James first op. Anyways, I wrote back to the secretary and asked her to send "King" Sune our love! She replied and I asked if she could tell him the nice thing I reffered him too. I replied back with you can tell him more :O)! I said please give him a big hug from us since I am one of the crazy mother who throughs myself around the poor mans neck everytime I see him! I wrote unfortunaley you do not see these heroes as much as the other lovely staff, they come in and do their great job and then moves on to save more lives. It is a great honour for all of us to have one of the worlds best heart/child/surgeon living in Lund (he really is top of the range and has developed his own surgeoun technics so he actually operates these HLHS children stage 3 when they are only 2-2,5 years when they usually has to wait until 4 years in most places, having higher oxygen saturation sooner cant do any harm!!). I also wrote please tell him we hope he had a great elkhunt (yes I hear som rumers sometimes), I really envy all of those can see him in action in surgery and he will have fan-mail in the post before Christmas :O)!!I also put of course we all how faith and trust in Dr Jens since he is a great surgeon as well.
One of the nurses came in to the room where James had his ice lolli and I was cleaning up the mess, she said, Sune will do the job. I said noo wow i thought it would be Jens, she said, no there had been some reschedules ;O), WEEEHII!! Sune walks in to the room with a smile on his face stretching out his hand, of course I was so happy I gave him a big hug :O)! Turns out they will have Islandics coming over because they want to bring children to Lund for operations, Sune hade checked up they would not arrive until 14.00. He said "oohh I will start operation 9.30 and will be finished by 13.00 (like having a coffe & a sandwish ;O) so I still have time". BLESS HIM, HE IS A HERO!!! ALL my worries for the surgery just went away, I asked about Jame´s "chicken breast" his sternum has a big lump sticking out which hurts him sometimes, but unfortuanely Sune cant do anything about it, he said it will correct itself more after time. I brought up my tiny worry about having a seizure since I know a little boy who had it last year, but like he said it is very very very rare and of course always a tiny risk with a heart surgery, I am calm :O)! A hand shake as a buy see ya Monday and James held up his arms and sticky hands, I said I think he wants a hug now (poor man) James had his big hug from his Surgeon and I had a big lump in my throat :O)!"King Sune" himself will do James third operation as well :O)!

Ok Ok Ok Nigel is not worried ;O) hhahaaha, yes I admire this man greatly, he has saved our sons life, he is a GREAT SURGEON, I love medicin and I am hugly interested in it and I would LOVE to see the man working. What can I say, Surgeon King Sune is the BEST!!! Siiiiiiiiiiiiiighhhhhhhhhhhhh ;O).

James was connected up on to a EKG that he would have on for 24h for the research, so he had to wear a rucksack (first time). James had the highest gear out in the corridor on the Bobby car, Nutrisionist Lovisa came and we talked about the low fat diet James will be on after the surgery since they have discovered the children leak fat out from their lymphs out in the chest and out the drains after surgery. It will not affect James much since he does not eat usual food and he will have a special formula.

Anastethic doctor Valeria whom we had before and she is a great doctor will join on Monday, lovely to have another wellknown face during the surgery, it makes me calm :O)!

James bloodsamples did not look great with a high HB 160 and the kidney tests. But I told the doctor James had not gained weight as he should and he was probably was a bit dehydrated. He agreed but still wanted new tests on Sunday afternoon.So I will tube feed James a bit as well!

We were off home. James fell asleep in the car, still slept at 16.00 when I put him in his bed, I collapsed on the sofa and fell asleep myself. It had been quite a full day and with a lot of emotions.

Nigel came home just after we had woken up. Tea, sweets and a snuggle later on. Now it is just to wait!!

Cross your fingers!!!

Lots of love, Malin

Flu

Oh dear to say the least. Our family has had a horribly flu going aroung 40C in fever and totally out of it, no coughing though. The only ones who escaped from it is Nigel, Timothy, Mårten, Sofia and James. Thankfully James has not come down with it and hopefrully he wont!!

"Lovebly, lovebly"..........

Yes the "Lovebly" song continous :O)!! James certainly inheritaded his fathers musical talents singing high and loud to everyone who wants to hear or not ;O)!

2nd- 5th of October- James ill

As Mummy and photographer I have been busy this week. I had my first proper photoshoot request :O)!!! I hade offered three photos with James holding a heart in his hands to the heart child fund here in Sweden http://www.hjartebarnsfonden.org/ if they had in use for it the could use, since I took them to hope help raising money for the fund. Honestly, I did not think they would be interested. But they were :O). first they asked if they could use on the front of their magazine http://www.hjartebarn.org/page64149.html and maybe have another one inside magazine, guess who was over the moon ;O). Anyways a couple of weeks later I had an email from a woman working on Hjärtebarnsförbundet and she asked if I hade more photos and if it would be ok if I they printed them up as greetingcards and sold them for the benefit og the heart child fund :O)!! So that was what I was doing during this whole week. But poor James fell ill, had a bad cold and did not want to be infront of the camera, or should I put even less infront of the camera ;O). I managed to take some and with some creativity it worked out. A good friend of mine http://maximozolsson.blogg.se/ Chatrine has a heartchild as well and I hade taken photos of Maximoz just the week before, so I knew he did not mind sitting still infront of the camera. I took my chances and asked if they would consider having their son on some of postcards, they were happy to help out :O)!! So we went their on this Thursday. Maximoz was not hundred percent and James was not happy at all during the time we were visiting and crying all the time :O(!! When we arrived home he was even worse poor little man, he had sky high fever :O(. Since James has and Immunology problem against viruses we have been instructed tio drive to the child emergency and take a test for the Swine flu. We were standing outside like plaigs waiting for the nurse, James was happily talking in the pushchair and I was feeling like a fool gping since he was so vitally well, but still I knew no chances we want to take! The male nurse who arrived att the door looked sceptical, I told him about James and how it was necessary to check him up. The nurse still looked sceptical, but was quite infomed when he came back ;O). Appearently when he put in James personal numbers a big warning came up on the screen. He asked us to walk around the hospital to the isolationunit, We had been there several times before so we headed over there and rang the bell. We were let in, not long after two aliens and Donald Duck came inside the room. The female nurse and female didoctor hade protection over eyes, plastic wrapped all around and the male nurde hade a moutH protection I have never seen before and most probably will never see again (since they refuse to wear them otherwise ;o), but they were out of the proper ones. It was shaped like a ducks, hhahahahahaa!! Of course with my sense of humour I could not be quiet ;O). James was shocked, he usually screams when they take out the stetoscoped but he just stared at them, adn I referred to Donald Duck infront of him ;O). Anyways quickly the dotor saw that James had double earinfections and a very sore throat. So no bloodtest needed. He was described a new pencillin and he will not take the other one whilst he is using the new one.
Before the pencillin kicked in, James was worse during Friday and Saturday. He ate minimal, vomiting as he usually does when he is ill and coughing a lot. On the Saturday his nappy was so dry I decided not to give him his Impugan, since he had eaten badly for two days, I was scared his bloodpressure would become too low.James has his button, but it rarely works to use now, he is pulling and screaming and vomiting. Poor little man could not sleep either even if he still had sky high fever. He was placed on his thrown in my lap, poor Daddy was not able to help out, since he was not allowed by James. When 2.00pm arrived I still thought it was nuts to give him Impugan, but I wanted to be in the clear with a doctor, so I called the child cardiology unit ward 67 in Lund. Thankfully, James doctor Peter Munkhammar was on the shift. I came clean and said I had not given James the Impugan and it had happened in the past as well that I hade put out one dose if he was ill not not keeping food down.I had called the ward about 50 times since he was born and had the same reply, do not give him the dose. I said to Peter it did not make sense to give James Impugan and asked if he agreed. Of course he did ;O) he told me to put it out completely then he gave me his normal praise as a parent, he is a self asteem booster this doctor ;O). We went on to books as we usually do, he takes his time and are very rarely short and stressed :O)!! Then we talked about the flu vaccine the media hysteria etc etc.
James had a higher dose of Impugan a couple of weeks ago since he often looked like a boxer and with only two doses he leaked theough everything for a week. So with him it is easy to see (except for empty bottles ;O) when it is time to give him Impugan again. I gave him his first dose today (read Monday 5th), back on track!!!!!! James did not even have a nap today, he is probably sick and tired of being still ;O).

21th of September

James took his very first steps :O)!! He has not taken many since, he is probably practising in secret ;O).