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.....