Monday 25th of February

James is doing fine. Thankfully he does not have any signs of a cold coming on. I have a "man-cold" for sure! Blimey, I have never been so handicapped. Now i know how Nigel feels when he is sick ;o). It is a typical Monday when everyone is extra tired both in the morning and in the evening.

Sunday 24th of Feb- The new travel system

I felt really rough and the children were exhausted. Timothy and Mårten went to football practise. My boys came back from their Dad. Nigel working on and off and doing laundry as well. I did the ground work. James had a session with very bad colour- ash-grey and blue but recovered after a couple of minutes.

Saturday 23rd of February

We had a half family day out :o) We went to buy James a new travel system, a flashy metallic blue. My old one looked a bit riff raffy and I wanted a good ride for James. You know he has reputation to keep up at the cardiology ward!! More than his screaming his head off entrances :O&. Well it was not enough, I will order another register car sign with his name and date as the one he has on his pram. Daddy Nigel is thrilled, not hehehehe. Still trying to persuade him to give me a credit card with no limits, but he has a good head on is shoulders thankfully :o) Well James deserves to go in style :o). Daddy has his new car ;o). Oh have to take a picture of it for you maties reading this.

I might need a Burberry bag though :O) :O)

Later on we went to McDonalds and headed to this massive inside playroom for the children. We never told them we were going there, we said we were going to do a grocery shop. When we arrived we said we were just going to check out opening hours. So when Nigel payed for them to go in, there was four kids jumping up and down. They had a blast!! We kept children off James and it worked well since it is a big place and it was not many there. James baby laughed when he saw Mårten bungy-jump, he thought it was really funny. So he had fun too :o). I started to feel rough and by the time we camed home I threw myself on the sofa. The children was totally exhausted as well.They had their tea, sweets and movie and went to bed. Nigel and I talked for a bit and then he was on his own :o)when I went into lala land.

A non medical advise :o) -if you are an adult and constipated; have a sense of humour, if not, dont be so tightened up and you might loosen up ;o)

Ah my father is out on sea again. Mothers day is coming up in UK, I have the worlds greatest Mum so will not forget!! And Nan of course! All my love to you all!! xxxxxxxx

Blue Baby-Our Sweet Blueberry :o)

It is the first time I have ever done this! Nothing you really do normally :o) but we had talked about it for quite a while. To take pictures of our crying baby. We did it for James so he can see when he is older and how he looked for others who wonder. The pictures don't do him any justice though, he is bluer in real life the flash brightens his colour:o) It takes time for James to calm down as his saturation drops to around 50% when he is really angry/in pain/upset. The last picture is after another one of his sessions - he is as usual totally exhausted since it takes alot out of him. We are used to see him blue of course and for us it is "normal" to see him more or less blue/dark when he strains himself. Otherwise James has a very good colour when he is happy compared to some other babies with HLHS. Our sweet gorgeous Blueberry ;o)

Friday 22nd of February

Blimey poor James was wriggly this morning. I had to sleep holding his dummy to his mouth. As long as he is happy :o) Otherwise it was a calm day. My boys was home today, the have half term leave from school. Since they are supposed not to be around James at all it is not easy to have him home. But they must have a break as well. We took a walk later in the afternoon I had planned to take the boys down to the water to feed the ducks but there was a storm outside and it is turning worse, so we just walked to the local playgrounds. N, C and Et Dad came and picked them up for the weekend. Almost around the same time S, E and M arrived from their Mums. Finally! We have missed them very much. They have spent extra time with their Mum since Sofia turned ill. Nigel was really stressed as usual because of work. I am amazed he is handling as well as he does with everything else around him. The workload is crazy for everyone at his work for the moment. Nigel has two and half employees short as well which they all have to cover for. I am really proud of him he has a very good head on his shoulders, but don’t tell him I said so ;o). Nigel had to start work again as soon as he came in, he, sat on the floor in the living room so he was close to the children anyways, shifting between talking to them, to his mate from work and answering emails. I served James, I cooked homemade burgers from the children, went for a quick grocery shop, started Nigel and my tea. Naturally James had a total Wendy on when I went to the shop hahhahha. Nigel is still working and soon I will order him to the sofa for our Friday snuggle and TV, have a feeling I don’t have to persuade him. He is dead beat tired. Lovely S and E are asleep and M and T are upstairs playing street basketball on x-box 360 soon going on their last game ;o) Night night don´t let the bed bugs bite...... xxxxxxxxxxx

Thursday 21st of Febuary

Slept well :o) yeeiy!! James was a bit worried early in the morning. I talked to my cousin Becca yesterday. Who is pregnant. Well done Nicklas ;o). Also congrats to my youngest sister Emma who is pregnant with her first child! I read it on the guestbook but suspected it already around New Years because of a suspicious MSN message hahhahaa. Blimey, I have been pregnant many times ;o). We will have one more baby, hopefully :o). Oh I know what some think, dont they have enough :o)? That is how it is in life unfortuanely, people have opinions about others lifes and judge from their own wishes. We have eight children with us so we have past most peoples limits already. Had enough? Is a weird question and statement :o) We are pretty old enough to deside how we want our lifes to look ourselves (specially Nigel hahahaha ;o) If we had enough we would not want another baby in the future, if everything goes our way. I have faith. If it is ment to be it is. My eggs have raped Nigels swimmers before ;o) ;o) Another child and our family is complete, we are lucky as it is of course :o) We could have been one less :o(. We have eight beautiful children.

James and I are going to the hospital today for his checkup. James started to have a nappy rash some days back. I have done everything to make it go away but it lingers. He needs something on prescription because it look like a mushroom growth. My poor little boy :o( James will be so happy to read this when he is a grown up hahahaha!

I did not forget the changing bag this time, and not James either (phew :o) I took some pictures before leaving. Poor little man he just has to suffer some times. We take so many pictrures of him I have desided we will have the other childrens own page at James´s website as well. Honestly, we cant make eight websites, one for each ;o) hhahahaahahaaha. Wish we could though because they all deserve it. James website was made for friends and family who wish to follow James through everything and not walk around and worrying about him and us. A sick baby is a sensitive matter and touches everyone with a heart. Knowledge is power to me and it makes atleast me feel safe.

Everything was good with James. Dr Higgins past by and asked how everything was with him and came back later to check James private areas. Yes he had what I thought, a fungus farm growing in a bad place. Poor little man! Anyways he had creamed prescripted for him and it will be gone in a week, hopefully. James weight is now 5.9kg and his saturation is what it was before so no worrries.

I talked to my friend Mia yesterday, it was very nice :o) I was invited out next Friday with some girlfriends. Yeeiiyy! I also have contact with other mums with HLHS children from Little Hearts Matters UK. It is great to have others to communicate with who are in the same situation or already gone through our stage.

Waiting for OP

Hardly slept anything last night. James is a bit worried during nights and I have a lot of pain at the moment. Probably the weather changes and it is cold outside. Nigel and I talked to about this summer. Maybe we can go away for a week to Italy with James and maybe the two oldest boys. Fun to have M and T with us aswell but then we need time alone, but then we dont have that alone with little James. If James is well enough to go, if we have managed the Dedication for James in England before, many ifs but so nice to talk about :o). Otherwise I am pretty low because i dont really LIVE I just WAIT. I wait for James operation. Maybe things will be a bit more normal than it has been uptil now. There will be many things still different but hopefully James will manage to eat by himself again so he does not have to have a peg fitted on his tummy, instead of a feeding tube.I am hoping for James to manage eat by himself but at the same time I am preparing myself for another operation for a peg. My way to cope is to prepare myself for the worst. Not very positive but my defence-mechanism :o). We have been a bit spoiled lately. James does not throw up six seven times a day anymore because of the feeding pump. There is a high risk of that starting again when he is supposed to try and eat by himself again. But we will take it as it comes. If he can manage fully by himself then it is wonderful, if not he needs help.
Talked to Nigel during working hours several times today. Him calling short times to have a break from work and stress off. Very nice :o) My gorgeous darling....

James and I took a walk to pick up Neville at daycare and meet up with the rest of the boys coming from school. James was happy as Larry smiling to left right and center enjoying the walk. He had a nap outside for the first time in the pram, right by the kitchen window. Neville were outside playing for a while. Do I need to say that James sleeps through everything? Some parents are whispering around their child when they are a sleep and they tell guests etc to keep their voices down. Makes it uncomfortable for everyone and is it not the relaxing that is the purpose, not tiptoeing? Blimey! I have never done such a thing. Take my advise it is a BIG mistake! You do yourself and the child a disfavour. James usually sleeps down stairs with all of us moving around, so have all my boys done as babies the first months, James sleeps when the children are playing etc so he does not wake easely .o). Then of course we dont allow screaming and running around on any circumstances :o)

Tonight we are having Cumberlands (thankyou Mum and Dad!), with mash, gravy, vegetables and cranberry saus. Yummy Yummy in my Tummy!!!! :oP

Monday 11th of February- Signed out

I was stressed going to the hospital. Mainly because I knew i was about to drive Nigels old car! Well it is right hand drive which i dont care about. BUT!! Parking in the parking house is not the easiest. I stressed off and first made sure i had the monthly parking card with me, mixed james milk since i knew it would take more than four hours, packed medicine and everything. James filled his drawers. Happily blue in his face, he could manage himself. "Congratulations you could do it without pain and thankyou for doing it now hahahaha". I quickly change on him, out the nappy changing bah by the door, grabbed the keys, placed James securly in the car, locked the house door and cleared off to the hospital. All I could think about was the parking house. i knew i had to stop, place the gear in neutral, pull the handbreak, climb over to the passenger seat, pull in the card in the machine, throw myself back to the drivers seat, gear one and loose the handbreak. I did and the blessid gate did not open. I had been so concentrated on the proceedure I did not see if the gate opened meanwhile. I did it again and it said monthly card places were full! Outside it had said four places left and I was first in line! I had to take a normal ticken and drove in. Unpacked james, took out the push chair to place James´s car seat in it and.......... My FLAMING (oh I just thought it to myself :o& ) changing bag!!!!!!! Where still nicely by door at home. NOT my day!!! No purse, no money for the parking ticket, I knew everything else James could have at the hospital. I sighed to myself I believed Nigel would have a strop on and I would have to wait at the hospital for him to come after work.

I rolled my eyes explaining how airheaded I was to the staff and asked if they had Nigel´s mobile number and if i could borrow the phone. Of course :o) They were sweet as ever. Well Nigel did not have a strop on and offered to come earlier. I responded with "home sweet home I can stay here until you arrive after work, no worries". I was so releived since Nigel did not a have a strop on HAHAHHAHAHAHA!!

Everything was fine with james, his saturation was 77% when he was happy. Of course he was crying for ten minutes so they had to wait for to him to calm down so his saturation would not show 55% instead. The nurses was wonderful as usual and served James with food and me too!! Annika the research nurse borrowed me 50kr so we could drive home without waitng for Nigel. I am so GRATEFUL!!! Thankyou Annika!!

I cant stand when people have strop ons because of mistakes, noone are perfect and we ALL do mistakes. I have in my "former" life taken way too much two faced cruelty I do NOT do so ANYMORE and noone else should either!!!!! Yet again aproaching is very important to me, empathy and have a laugh about it, it happens to everyone. The person who have done a mistake feel bad enough to have someone else pointing fingers at it. Shrug and have a laugh for Petes sake!!!!

Sunday 10th of February

Another sleep in. We drove to Lomma and had another lovely walk in the sun by the sea. I shopped some fresh fish for my dad in the harbour. Dad came and served me the boys back. He spoils me rutten! :o) We are very grateful for a weekend "alone"!!!

Saturday 9th of February

We had a VERY quiet morning, James had his medicine and food drip started as usual at seven as usual of course. We had a sleep in. Nigel fixed us a lovely breakfast and we headed out for a long refreshing walk. The weather was absolutely lovely!! We followed the small creek in Kävlinge. There was a little cold breeze but the sun stood really high and we could smell spring in the air. We had time for some smooching :oP . Seriously we had time to act like we were fourteen hahahaha. You all who knows me know I am not the shy type and my mouth are full of VERY filthy jokes (when i am not behaving) but even Nigel embarrassed me for a while and we probably scared some poor elderly couples off ;o). James was not embarrassed (main thing) and enjoyed his ride in his pram. First time in two weeks he had been out properly. Stood for a while watching the ducks swim around and we tried to show James. He baby-giggled we wanted it to be because he saw the ducks but it was most probably at us. Our tiniest darling, thankfully we can see despite everything he goes through, he is a really happy little boy. He is so brave, more brave than Nigel and I together. James is now 4,5 months old and he has gone through so much in his young little life.

We had a lovely evening together!!! I called my father during the walk to hear how the boys were behaving and doing. They had been to Denmark and he had spoiled them rutten, of course :o) Not surprisingly C´s fox behind his ear had showed up so I had a talk to him and and promised (not threatened ;o) I would come and pick him up if he did not shape up. C suddenly decided to calm down. Guilt hit me again, but not because they were with my father and had a blast :o)

Friday 8th of February

James could return back home on leave over the weekend. My boys went to my father to have some quality time with their grandfather; Nigel, James and I had some quality time together. We had a lovely meal and all three of us snuggled in front of the TV. I missed my boys very much but since James should have been in the hospital I had already arranged with my father for him to have them and they expected to see him. Then Nigel and I really needed some quality time as well. With eight lovely children it does not happen too often :o)

A sick sibling- in a positve light

In normal cases you feel guilty about your healthy children, when they are sick or have a cronichly sick sibling there are no words to explain it. Our children takes it really well. My four boys lives with us full time. So if they ever get a break from the new life we all live, it is every other weekend when they go to their father and sometimes Timothy visits our friend Disa in Höganäs (bless her heart). M, S and E are with their Mum every other week. So they have a break from surprise hospital visits, the mental stress we try to hide as much as possible for the children and the circulation around James over all. There is a lot we are used to with James and others dont realises what a difference their is to him when he is feeling well to other children and how much more time it takes. It takes time and has too. M, S and E also have every other week where they thankfully have a Mum who can give them all her attention and it circles around them three her week. Then they come to us and there are five other children, one is seriously ill and naturally they dont have all the attention just them three. There is always a positive side to things and a bad, we all deside which one we want to focus on in life. My boys have already gone through things they NEVER should have. They have been seriously let down by an adult and I am their stabillity (and now Nigel as well of course). I am so surprised they (and S,E and M) adapt so well and takes things naturally. Last time I was in the hospital for fourteen days!!! Nigel was home with them and Mum and Dad when they were here. But still, I am their Mum. I always seem to worry alot more than I need to. They take it naturally, they are used to me rushing off to the hospital. Sad but true. Many times I have said I´ll soon be back, and I lied I was home a week later. I have learned my lesson. I am not saying having a sick sibling is POSITIVE but it can be positive in learning about life like it is for all of us.; Never take life for granted, there are times when we have to stand back because someone needs it more than us, empathy, sympathy, compassion, we can feel jealousy for a good reason; if we have not opened up and said how we felt in surtain situation, we are taught to converse more about feelings, we are taught how to listen to others and be grateful for life. In that light it is "positve",even if we all wished James were healthy. But in the same time, if James did not have his special heart and scar, he would not be our James! Of course we would not want anyone else than him. I have expected T,Et ,C and N to feel worse. First of all the have gone through hell before moving, then it was the big moving part, changing school and daycare, a new sibling, a sibling close to death, traumatised and depressed Mummy, a Mummy living on and off in the hospital etc etc. I am gobsmacked!! I alerted the therapist at the hospital for the boys and the three support if needed, no need so far :o). Maybe all the explaining is paying off? Maybe them having it very tough before knowing I stood rock solid supporting them and took action together with their school makes them feel safe? Even if I am not here they know they can trust me and I love them madly. I wish sometimes life looked different for all of us and mainly for the children and James. But I am grateful to life. I am grateful we still have our James and so is his siblings. I am sure they know deep down they are the lucky ones. So am Nigel and I. We are lucky to have eight beautiful uniqe children in our family!!!!!!!!!!! I am very proud of Nigel and all our children. I Love You ALL very dearly!! xxxxxxxxxxxxxxxxx

Thursday 7th of February

Everything went well. James kept his Saturation and it was around 75% sometimes lower and sometimes higher. It is how it is :o)

Saturation meter

Wednesday 6th of February

Finally I had my baby back!!!!! They closed all extra oxygen support from the hood and James stayed between 70-80% in saturation. Mostly above 75% which is the limit for the doctors, when James is happy :o). It was so wonderful to finally have him out from his UFO, tent or whatever you would like to call it. James had been "camping" for almost two weeks now in his oxygen tent. James had his pinguin mask on during the day. So when I took him out from the room in the pram I had a portable oxygentube with me, plus his food drip and the saturation metre. It was ridicolous how happy i was to finally have him with me just out from the room. I showed him off in the pram and james was fascinated about all the lamps above him. Of course he was greeted by the staff and he fired away some smiles. When we finally came outside the room I called Nigel silly happy telling him the good news. Well after a while in the corridor I did not know what to do anyways so we went back to the room again. Hahahaha.

Elisabeth came over for a chat and I brought up my feeling of insult and humilliation after the clumpsy comments from the doctor. Elisabeth said she would deal with it and I was releaved I did not go out to the staff in rage unrationally earlier. It was nice to have Elisabeths support and she totally agreed and understood why I felt as I did Saturday night. I pointed out it was the approach, someone assuming behind our backs and if it would happen to first time parents. It was the main reason why i brought it up with Elisabeth I did not want it to happen to anyone else. The relationship to the staff is VERY important to me and I am VERY fond of them. So it felt good to bring it up so I could let it go and not worry.

The conselour Anita came over to inform me about leave with very sick child, health benefits for James etc. We had a nice chat and giggles as well. The physio therapist came over and gave us praise as parents because of how we had been working with James so he shifted flem and became better rapidly. It was really nice to hear but I felt like a big question mark hahahaha. Well I tried to put it on my plus account to feel better about myself :o).

Nurse Elna came in and we talked about James oxygen. The doctor said they would try and take away the oxygen by the next day but we agreed to try this day instead since he only had 2,5L at that time. It worked splendidly!! :o) The telemetric (the monitoring of James heart from the nurses room) was also taken away, I felt totally safe about it. They kept the saturation metre on though. James saturation dropped a bit a couple of times, but who have time to breathe when you have bunnies you can hit and kick?? :O)

James like baby superman in his UFO

Tuesday 5th of February- Still in the UFO- Day 11

I woke up at 08.00 when Viveca was with James and doing her controls on him. James was fine in saturation and sweet nurse Carina entered the room. She said the doctor wanted her to lower the oxygen in the mask. I asked her why they would not lower the oxygen in the UFO instead? She said she did not know. Doctor Petru came in doing his rounds. He is a medium short , dark haired doctor by rumour he is from Rumania, I must remember to ask him. Most importantly he is very kind and takes his time to inform and to explain things. First I asked him why they lowered the oxygen in the mask first and not in the UFO? He said because James seems to tolerate lower oxygen in the mask but not in the tent, most probably because in the tent it is humid which helps freeing his airways. I asked Petru if his saturation suddenly dropping if it was because of his heart. He said it was the case because of the shunt being smaller and the circulation varies. Either it goes out in the body or to the lungs. He said James used to use a bigger part of his lungs inclusive the fistles healthy children don’t use. But since his body needs oxygen this space has been used as well. Now when he is ill and has a lot of flem this part is not used and his saturation drops. Adding with his circulation is not as it has been.
James oxygen was lowered from 10L to 5L the day before. Today the lowered it to 3L. So far so good :o)! I just want to be able to take out James from the UFO so I can hold him and snuggle. I have not held him properly since 11 days back. I miss him :o( and so does his devoted Daddy of course. I called Nigel after Petru had left to give him an update. I want to do it as quick as possible when I know things so Nigel is included as quickly as possible.
It is amazing how James accepts everything. He is not just a little toddler who just sleeps eats and fill his nappies. He needs more attention of course and has his own little language. He love mummy and daddy but for some reason he appreciate attention from sweet nurses just as much. He is a real ladies boy our little charmer. Fifth teen years from now I will be the one guarding our sons room with a shotgun :o) of course loaded with salt but I am a fairly good shot ;o).

Monday 4th of February- Sleepy Day- Day 10

James was a bit worried during the night. He had his Ventoline inhalations at 24.00 and 04.00 as ordinate. I heard the alarm go off several times because of James saturation going down under 65%. At one point the nurse came in and she said James pulse was a bit too low, it went under 80bpm most probably because of the kloridhydrat. So she inhaled him with adrenaline to make his pulse raise. So because of saturation and too low pulse he had adrenaline at 02.00 and 06.00 as well. He woke up several times where I was able to calm him and go back to sleep. Wonderful Birgit came in at 08.00 and weighed James and washed him off. We agreed he would finally have a refreshing bath because he was minging to say the least. He is living in a very humid and warm environment, I am just waiting for him to grow mushrooms under his arms and chins ;o) Eeewww poor boy. You should see him in his soft chair we put him in. He looked like a little Buddha n his thrown. :o) Ingrid and I gave James a good scrub. Anita came in to have a talk to me. The nurse came in with medicine, James had more milk connected to the pump. I cracked a joke with James and Michael Jackson and their oxygen tents.
Nigel and I talked a couple of times and he came over for a while before going home to the boys.
I asked to talk to Dr Thomas during the rounds. He said we could expect James to have extra oxygen support for weeks, it is going to take a while for him to get back to where he was.
Viveca James´s assistant nurse for the evening was kind enough to stay with James for a while so I could take a quick walk outside and get some fresh air. I met up with Karin by the patient hotel and she showed me the way to little angel darling´s grave. It was of course really, really nicely decorated his parents. We had a quick walk back and a cup of tea and a chat. James was a bit anxious and had tummy pain. But his tummy was way better today.
James was very tired this day and slept most of the time. I went to bed early and it was one of the most calm nights since James fell ill.

Sunday the 3rd of February- Obstructive Bronchitis- Day 9

I woke up 07.45. Blimey did I sleep? I felt like a zombie. Assistant nurse Ingrid was with James and she had put him on the scale. She is really a sweet person and she fixed things for James, did her controls and James had inhalations. First Ventoline, Pulmicort and later adrenalin.
Dr Eva came in and I asked her what James had now and she said it is Obstructive Bronchitis. I know what that can mean. Elliott had it as a baby and it usually starts with a RS-virus as it did for Elliott and James. Meaning if we are unlucky James can have airway problems every time he becomes sick or have a cold. If we are lucky he won´t have it more or just a couple of times. Me? I see many more days on and off in the hospital, but then I paint the devil on the wall :o).
Ingrid asked if I wanted a nap and she offered to babysit James fro 13.00-15.00 I gratefully went in to another room for some rest. When I woke up Nigel and the gang had arrived. Mum and Dad had bought Mårten a birthday cake we all enjoyed. His birthday is on Monday the 4th of February.
In the evening James needed help with his tummy, inhalations and he was really anxious so the nurse gave him a sedative called kloralhydrat.

Saturday 1th of February- RS-virus -Day 8

I did not sleep much. James was worried during the night, with a stuffy chest that needed inhalations and tummy pain. I was more awake than asleep. The morning started with him needing an inhalation. They took a flem test to check yet again test for RS-virus infection. It turned out negative. The doctor arrived at elevenish. Most of you know we have planned for James being christening at Easter in England. Well it would have been Easter if he had his operation done. We planned to drive naturally, even if we had heard from the doctor it was ok for him to go by plan we would not risk it anyways. I had not brought up the christening with Elisabeth, we would do that when the operation was done and when James was stable. We now have GPS which includes maps from throughout Europe. The best thing about it is that we can just press the SOS button and it will show us the closest way to a Hospital from where we were. Anyways I had been complaining a bit disappointed about it, of course. That it now would be off until the operation is done. Apparently some staff member had not really listened to what I had said but made assumptions about it and brought it up with the Doctor, instead of with me. Dr Eva did the rounds today and she came in. I greeted her because I had met her up in ICU before. She was the one who did the ultrasounds on James at that point. She started with saying, “James needs an operation” My heart almost stopped and I had the time to think, oh blimey they really think he is more sick than I imagined, he is in danger or they would not do an operation now. My eyes almost popped out and I asked “NOW”? She replied with now when he is healthy again. I thought “DUH, I have known that for months, what is she on about?” She said “I have heard you are planning to go England” I said “yes, so?” She said James can´t manage to fly how he is now” I said I know and we have never considered flying we will go by car, she and staff had assumed even if I had said we would have DRIVEN to England. She continued with “James needs his operation first” and I replied with “yes of course, we would naturally not go until after the second operation as planned!!!”. She said “oh, good”. I thought to myself, what in Gordon Ramsey is this????!!!! After, she asked if we had asthma in the families etc. She said when James has been well for a week they will call him in for an operation. That was really good news. Dr Eva ordinated Pulmicort inhalations and Betapred tablets, both cortisone medicines, to finally actually treat his flemmy airways. Good news to me/us. But have staff going behind my/our back assuming things and go over my head and talk to a doctor made me fume for the rest of the day. I would have asked what the F is up straight away to Eva if she had not startled me. I was gobsmacked!
T, M, E, S, Nigel and Mum and Dad came over and stayed to the afternoon. It was really nice considering, both Nigel and I are mental tired wrecks. The worrying about James takes a lot of energy from us. Adding on that, there was someone in the staff who thought we would put our precious boy at risk! It was so humiliating it was what made me fume. I have had him in my arms dying and they assume I would put him at risk??. I would walk through fire for any of our children.
James was still stuffy during the day and he stayed put with the extra oxygen. His tummy was a bit better and he managed himself better now. My friend Karin was sweet enough to come around for some chitchat. We had a nice girl gossip and mummy serious talk before she went back home to her husband who had cooked a lovely meal for them. Meanwhile she was with me, food arrived which I had ordered together with the staff. Noodles with chicken, lovely!! Ingrid, James assistant nurse for the evening, brought it in on a tray and she had added milk and a chocolate pudding. How sweet!!!! I am really fond of the staff here and I trust them. I am a very open person and believe in straight conversations. That´s why I was so upset, it would have been so easy for this person/ persons to have checked with me, that I had no daft ideas that would have jeopardised our son!!
Evening came. I called Nigel and I said I would call back after “Pride and Prejudice” at 23.00. Well I fell asleep. I woke up at 00.30 by James´s horrible breathing, he needed inhalations. I started thinking of what had happened earlier the last day. I started fuming again. I started thinking of their ethics, morals, respect, common sense and their approach towards me. Fuming. I had to call poor Nigel, so I did. ´Nigel tried to calm me and said I could bring it up with Elisabeth. We hung up after kissi kissi and lovy lovy :o) But still fuming. I have emphasised before how it upsets me when staff don´t know how to approach the caretaker or caretaker´s parents with respect and common sense. It is my profession. The staffs have to consider, we are parents with very sick children, we are parents with a lot of worries and I am lucky. Before James I have had four babies, I have great confidence in being a mother. As I said before, hospital environment is my work area so it does not make me feel insecure. But what if I was a newly mum? What if this was my first baby? What if I was insecure in everything in the hospital and scared of what they were doing with my baby? What if I was very insecure in my role to the staff?? What if someone else will be treated in that shitty way? I was so fuming I could not sleep. I finally put on the TV and watched women who wanted breast implants on Ricky Lake show. James woke up several times of course and I could assist him and ask for inhalations. What a waste, so incredibly unnecessary!! Because someone coward was too afraid to ask a direct question to me and instead sent a doctor to point finger. Still fuming... I fell asleep again at 05.00.

Friday 30th of January RS-virus Day7

James was anxious during the night. On top of that, the sensor to the apné alarm lost contact with his tummy so the alarm went off, I stood attention by the bed in a hurry. I checked so James breathed as he should and I attached the sensor back on his tummy.
James woke up in a bad state. He cried hysterically because of his tummy. They helped him immediately with a catheter. You could hear his every breath since he was way more flemmy. His saturation was below 60% which was a bad sign. He was worse than the other day. I swore to myself, he had done so well and now taken two steps back. James had lot more flam and the saturation was down to 50-60%, inhalations, suctions, panic attacks. The doctor wanted James to be on a Be-pap support which they would fetch up from Child ICU. The physiotherapist asked if he could speak to an anaesthetic doctor before he ordered a Be-pap support, Anaesthetic doctor Valeria visits and says he does not need Be-pap but definitely needed more oxygen support. James had more strained breathing with more tummy inhaling, but not as bad so Valeria thought he needed a Be-pap. She ordered Penguin oxygen mask to James. This is a mask with open sides, made of soft silicon and on top of the mask there is an image of a penguin. Really cute! James was not very impressed, but when I squeezed in his dummy inside the mask he was happy again. Well he fiddled around annoyed from time to time, but I don’t blame him. He is a good boy. James is a very, very strong boy and everyone he meet he impresses. When James is cross, he is really cross and usually for a reason. He is not a whiny child in between. His saturation can go down to 38% and he still puts his heals down the mattress, throws himself backwards, black-blue in his face and waving his arms in fury. James is truly a fighter and we are really grateful!! He is also very active I believe he will make us run after him in a short future and he will have a great big cheeky smile on his face :o)

Thursday 30th of January RS-virus Day 6

The doctors had discussions about soon try and reduce oxygen. They would let him be this day, but he was already doing better. Saturation looked better and I tried to count out when we possible could be able to get ourselves back home again. I missed normal life. James cried much of pain in the morning the assistant nurse said she would try and put a colon catheter and see if it helped him. James screamed himself blue. Until the catheter was put in, it really helped him. He instantly stopped crying and started baby talking happily. Poor baby it was heartbreaking to hear him cry in such pain. It was devastating to realise James had not the strength to pooh by himself. He was helped with it several times. He woke up screaming and a lot of air and pooh came out instantly when they helped him. It hurt me to see why I had been hysterically crying at home. He needed to empty is colon several times a day instead of one to make him feel better.
Nigel came over with E, C and N. It was wonderful to see them!! We went over to the playroom, Elliott made his homework and they watched a movie for a bit. I had missed them and missed them so much, but emotionally I was so much up in James. N went bored stiff after a while and longed home to Nana and Granddad. It made me happy, since he did not suffer missing me madly and he actually had a nice time at home just as the other big boys with Nana and Granddad.
I took the boys over to check out from the patient hotel. Since he was feeling better they would not have staff with him during the night. The boys thought it was both fun and scary to walk underground to the hotel, a bit dangerous thought with the trucks coming in high speed. It exited N. Nigel watched over James of course.
When sleep time arrived. The alarm was placed out in the hall so the staff would here the alarm if James saturation went too low. They put an apné alarm on James so I could sleep without worries. It was not a calm night.

Wednesday 29th of January-RS Virus Day 5

The doctors felt optimistic today. They wanted the staff to take James out from the plastic oxygenated hood and try and support him with a cone instead. Elna was the main caring nurse for James that morning. She is sweet, humble and have a sense of humour I like, The other day she painted red flowers on James´s “curtains”. Because I joked and said he could do with curtains with flowers on them instead of plain white ones.
We took him out from the hood where he had 10l of oxygen support. We had to put the cone on full speed on 15l and I could see how he went lower and lower in saturation. He was just above 60% for the most of the time. Elna wanted him to stay outside the hood for 2hours to see how it developed. I was negative and thought if I had not gone higher in saturation in 30 minutes no miracles would happen later either. I started to feel worried about James, he started to get anxious but I have all trust in the staff up here. So I bit my tongue for a while. Anyways he was back in his hood again, he was back camping again ;o). The doctor Petru who was a new doctor for us said they had been a bit too positive and they would now wait a couple of days to try again. I felt relieved. All I wanted was not to make James suffer more than he already had done. Of course it was not their intention either, nor in 67 or in 61. The staff down in 61 is naturally a wonderful staff and excellent in their line of care. Keep in mind, James belongs on the cardiology ward 67 and on 61 don´t all of them have experience in heart children. They are specialised in infections. So I absolutely don’t blame some of the staffs for being insecure, they had done an admirable job when he was there. But as I mum it makes me feel anxious when there is not heart expertise around at all times.
When the evening came I was exhausted. Blimey, I ate way too much chocolate; I will gain 30 pounds before we are out from here. Nigel offered me to go home and he could stay. I missed the children at home very much. But I could not leave James. Naturally I now Nigel is just as capable as me in James´s care. First of all I am the one mainly caring for James of course since Nigel works, James had been very ill and I would not be able to relax going home anyways, I would still be in the hospital in my thoughts. I did not want to disappoint the boys. I pleaded to Nigel to bring them over the following day instead. He promised :o).

Tuesday 29th of January- RS-virus Day 4

James is feeling a bit better. He has a lot of tummy pain as he usually has :o( .
He has been crying extremely much at home, or screaming of pain for ten minutes and then fallen asleep of exhaustion. Elisabeth and Lotta recommended lactulous a slight laxative to make it even easier for him to pooh. Even if it had normal consistency it was too difficult for James to pooh by himself. It helped for about 1.5 weeks then it was back to how it was again.
One of the nurses said they were going to take another RS-virus test on James and he would be moved somewhere depending what the test said. Either up in 67 the cardiology ward or at Child ICU. Of course ward 67 did not want a RS-virus wander around in their ward so I found it unlikely they would take him and he was way too well, thankfully, to be taken up to ICU. The infection ward chief definitely had a strop on and wanted James moved since he took a lot of his staff. I was happy about that since it made me feel insecure and I felt unsafe to have him on ward 62 since some of them were insecure when it came to James low saturation and special heart. Nigel came over as he did every day. I was exhausted. So was he. All the mental stress you go through inside. The worries about James had been worse of course these last couple of days. But he was going in the right direction, he started to feel better. I was not, O was really angry inside. Poor Nigel thought I did not want him in the hospital with me. I was full o f adrenaline. James´s panic attacks had taken it course. It affected me and I kept it inside of me. The nutritionist Lotta came over and had a chit chat with me. I forgot to ask her the most important thing, if she had any formula without cow milk protein to offer James. Just to try and see if his tummy pains went better. I waited hours to find out where James would be moved. Thankfully Elisabeth came down and talked to us. She wandered off to find out where we were going. She goes straight to the top. Ten minutes later we learned that James was going up to 67. It pleased me, home sweet second home :o). We can always trust Elisabeth´s. She is our link outside the hospital and our ass-kicker ;o) inside the hospital. She is gold.
Viveca James´s first caring nurse came down to pick us up with young nurse Elna. We had a fun walk up to 67 with, oxygen tank, drip and everything else. Nigel took some pictures of us walking up. When we passed the reception in 67 we were greeted. I was silly happy. It made me feel safer, the staff here knew James and had handled 100 of 100 heart children. I knew most of them. Most importantly I knew they were not insecure about the care of James. If the staff acts insecure I become very nervous and feel angry because of this.
Soon in room 8 James realised his advantage to be moved. He had a play mobile with rabbits in different colours over his bed. He was happy as Larry!! Of course the sick humour I have made me call them his playboy bunnies, probably only me laughing about it ;o). James had a fairly good day. In the evening two very good friends of hours showed up with food, magazine, book, drinks and sweets. So sweet!! They have practically lived on ward 67 for 6 months so they have a lot of tips. Devastatingly their baby boy was now an angel. They knew how to take the underground corridors to get to the hotel. When it is late and rainy it is not fun to go outside to walk to the hotel. I booked in to the patient hotel since James still would have a nurse by his side during night. My friends kept me company and showed me the way. Nigel had left a bit earlier.

Monday the 29th of January- RS-virus Day 3

In the morning when James saturation dropped down to 53% without him being upset and anxious I became really anxious. I dropped for about 6 minutes when I asked them to call on a cardiologist; I became afraid something was really wrong. What I did not know was that the nurse called in Thomas who was at home to be called in to acute emergencies. We are talking severe heart problems etc. Poor man must have been on his bike going like crazy. He came rushing inside the room still in outer clothes and with his biking helmet in his hands. By then James saturation was up to 73% again. Thomas was probably not a happy chappy with all rights. Oh he never showed anything for me but hopefully gave the staff a lecture. I felt guilty even if I was not responsible. The staff should have called up to child ICU they always have doctors working at the spot. James had several panic attacks when his flam went too thick and they needed to suck him with an olive sucker. An olive you use outside the nose so they don’t have to put a tube down, so it makes it gentler. James had several real panic attacks where he screamed in panic and his saturation dropped down to 38-42%! His face went almost black as dark as it was from the lack of oxygen. His eyes were wide open and of course for the most part he was staring at me in panic. I tried to calm him the best I could, but it was impossible. When he started I gave him more oxygen from a cone as well. When he had his eight panic attacks that day it started to be too inhuman for me. Thankfully I am really calm and not insecure when it comes to treatments or it would have been too much for me to be in the room with him and would not be able to support him. Remember we were down in an infection ward. Not on the cardiology ward. They had contact at all times with the cardiologists and they were the ones who were responsible over James. A nurse from the ICU ward was called down, we had never met her before .I thought she worked on the ward 61 as we were on that day because I recognised her. Her phone called and she answered with ICU. I was really surprised. She stayed with James for a couple of hours through the worse part in the morning. I was really grateful and I felt safer. But James had an infection and could not go up to the cardiology ward just yet. It showed on some of the staff on the infection ward, and I don’t blame them. James dropped in saturation big time and for the staff it is easy feel insecure when you are used to a child who does not have a low saturation without being ill. Anyways after those times it started to feel like we were torturing James and inside of me I started to get angry. I wanted to protect him. I said I wanted them to contact the cardiologists and ask for sedative, something to slightly calm James so he did not need to be so affected by what was done to him and as well. So they did get an ordination from a cardiologist. But someone had to go up to child ICU and pick it up. Meanwhile the young nurse tried nervously to suck his nose again since his saturation started dropping. I said to her twice that James needs to be sedated first because the way he dropped when she tried to suck him was way lower than it was appropriate. The third time I told her she asked a assistant nurse to go up and fetch it for her. A fourth time and I think I would have taken the thing and started sucking her airways with it. I was fuming and just as fuming at Nigel because he did not say anything. He had seen it ones and by that time I had been there for 5-6 of those assessments. Finally he had his sedative and he could sleep for a little while. I felt really angry inside. The doctor ordered albumin for James (synthetic blood) to go in for two hours. After that they gave him blood. They wanted him to have more blood volume transport more oxygen around. During all of this the infection ward 61 doctor came inside the room to introduce himself. I think I wanted to know more of what was going on in the room. I did not like what he saw that is for sure, he introduced himself and said this is really intensive care treatment but ICU don’t want you up there because of the RS infection of course. That night staff asked when I would prefer to have him out by the nurse. They probably heard I had been a pain in the bum the other night ;o) I called on them at 21.30 because I started to be cross eyed. I stayed out in the room with James for 20 minutes, He was having a shot for blood thinning treatment and they needed to suck his nose a little. I could not relax until he was through all of it. I said goodnight and dropped to bed and slept like a rock. James had a good night as well. Except for his tummy pains.

Sunday the 27th of January- RS-virus Day 2

Annie was with James when I arrived at 8.30. He had been crying a lot during the night. Been anxious and shifted around in bed. He had still a slight fever and sleep in his little oxygen hood. The infection unit is the only ward which uses the hoods. They are bigger than the old ones but suits really well for babies with rs-viruses. A big plus is that they don’t need anything up their nose to irritate them or a cone blowing in their faces. James thought it was really cosy. But he was not doing well in his saturation level. For the most part he was around 60-65%, not included when he panicked. I had several inhalations with adrenaline and Ventoline. Adrenaline raised his pulse too much which of course has an effect on his heart. Annie stayed with us until mid afternoon when she went back up to the ward. I was there anyways and took care of him so it felt unnecessary to have someone else in there 24 hours. Otherwise the Sunday was pretty calm and he seemed to be doing alright considering. I did what I could with the caring around him and tried to keep myself useful and active. To just sit around and make the staff do everything bores me to death. For me it is also important to be the one caring for him the most. I mean I´ll rather do it, he is not the hospitals baby he is ours. If you let the staff do everything you do don’t do yourself favours in my mind. Keep in mind, healthcare is my profession. Hopefully I can study to a nurse in the future. After all we have gone through I am sure I would love the job, feel secure with it and have good experiences about healthcare after everything with James. Of course I would have a great interest to work with little sweethearts.
James had to be watched over during the nights and obviously I can´t stay up during nights as well. I was sleeping in our room and they were supposed to take out James to another room with other RS-virus babies during the night. At 21.30 two nurses entered the room and opened the doors fully. They said “we are working tonight and we take James out now”. I just looked at them and said;”” no you are not. Thinking to myself, is it my child or the hospitals? I said;” I will call on you when I go to bed and you can take him it will be around 24.00, if it is ok for you”? Honestly, I asked but just to try and sound polite. The nurses said “eh yes of course it is ok”. Fifth teen minutes later an older assistant nurse came in and moaned about, it`s better to have them collected together. I just replied with, you will when I am going to bed but now he will be with me. I don’t like to be stroppy to staff, but if they are acting unprofessionally I really become annoyed. When you work closely to people with a sick child or anyone else for that matter you have to think how you approach them and try to think before you talk and act. The staffs have to start and think;” how would you like to be treated in this situation”??

Saturday the 26th of January- RS-virus day 1

I slept down on the sofa to watch over him. Or I should have written, I was supposed to sleep on the sofa. James was crying on and off all night and vomited. He was really anxious and I had only one hour sleep that night. In the morning he had 38.7 C. Of course I knew James had to go to the hospital to have fluid before his saturation dropped. Arriving at child ER, we had help at ones. It took them too long time to put the drip in which annoyed me. I was puzzled. We went in with James after calling the hospital to book off his operation. He had vomited the small amounts he had coming slowly in to him by the pump. The paediatrician took one look at him and listened on his lungs. She said it is probably a RS-virus. Seriously? I thought she was daft. He had had4 shots in 4 months against the RS-virus. I had heard a RS child before and James did not sound stuffy in his airways, by ear anyways. He had vomited a lot for me it was stomach flu. Oxygen was ordinated because his saturation was lower than he usually is. They inhaled James with adrenaline to free his airways. The test for RS made it clear, it was positive. The cardiologist Thomas Higgins looked sympathetic on us when came inside the room. He turned to the other doctor and she said he was rs-positive. He looked just as disappointed as us and went “oh no not that! . Doctor Higgins (originally American) had to question the staff twice why James had not been connected to a drip yet, he empathised the importance and it had o go in quickly James was of course signed in . When we walked out from the emergency room I had James in my arms with oxygen cone by his face and after us came the drip. I could hear the other mums go o poor thing etc.I hate when they stare like he is a freak show though. I thought to myself, blimey this is nothing and other people react to see it. I have gone mental! We finally had a room. Annie a nurse from ward 67 followed us and she was going to be with him over the evening. It felt reassuring to know who it was. She works in the cardiology ward so he was definitely in good hands.
James was doing fine, I was not over the top concerned. In a way I think another parent with a healthy child have been more concerned at that point than me. When Thomas H looked at him he said he had bad colour and slighter fast breathing. Thing is, I am used to see James with more or less bad colour and fast breathing. I have counted James breathing frequency too many times and it has been not over the top more than a little while. Since it was not his heart that was alarming I was relaxed at that point. We were informed; James had to be watched by staff over night. We had asked if Nigel’s parents could stay with him for a couple of hours so we could pop over to the party and get something to eat. If we did not show up at the party we would have to compensate and pay DHL for the expenses. At the same time James was doing really well and we knew this was the last time in a long time we could go out together. It was totally fine for the staff and they said Mum and Dad did not need to stay with James since he was watched over all the time by staff anyways. So we all went home at 17.00. Nigel and I got ourselves ready for the party and rushed out. We were not in the party mood of course. We went there to eat, had some entertainment and worried about James. I called several times to the ward and James was doing great. I felt sick inside, I asked myself and Nigel several times what we were doing there. As Nigel said, there are staff with him at all times and we can’t do anything, he is doing fine and we will be only in the way. I still felt like an awful mother but in the same time I thought if this is what I need to do to relax for a while so I can be a stronger mummy for James, I can stay for a while. We headed back at 23.45 and we were back at the hospital at 00.30. Felt weird to walk down the corridor in high heels and a little black dress. Finally we could see him. I realised being in the hospital with him during the evening would have been useless anyways. He was in a smaller examination room with a tiny friend who also had the RS-virus and a nurse was by their beds. We were greeted by the staff. James was sleeping heavily with a plastic hood/tent over his upper body where they also gave him oxygen support. We were both calmed and relaxed when we saw him. We went home to get some sleep. I was exhausted after just been having one hour of sleep the other night and the mental worry. Nigel was exhausted and sleepy because he is a man ;o)

Friday 25th of January – Cold?

I had been in contact with Elisabeth the last couple of days because James sounded a bit more flemmy. I was not sure if it was a cold. I did not think so. James is always more and less flemmy it is a side effect of his diagnose. The reason why he now was back on a feeding tube was just because of his flem. He became more flemmy and started vomiting because of it. Elisabeth and I discussed it and if he had a cold and showed more symptoms on it being a cold I had to call ward 67 and call off his surgery on Tuesday, so another child could get his operation time. Of course no operation if he was not completely healthy.
Neville had a virus with minor fever and coughs for a week. I brought him back to day care on the Tuesday. When I picked him up the staff said they had stomach flu going around at dagis. I damned myself and said he is not coming back more this week. I wanted to keep him home so he would not catch anything and jeopardises James. Friday arrived. My dad was sweet enough to pick up the 4 boys at the train station so I did not have to drive up to Höganäs and drop them off. Mum and Dad arrived this day to help us out next week. I really looked forward to see them. They are both invaluable, lovely and they mean a lot to the both of us. I prepared tea to have it ready when Mum, Dad and Nigel showed up. James was a bit anxious and cried on and off. I desperately tried to comfort him by rocking his bouncer with my foot and cooking at the same time. He vomited a couple of times. It is common so I just picked him up, stopped his feeding pump, changed him into clean clothes and started the pump again. Mum, dad and Nigel arrived. James was a bit whiny but he took a nap during tea (knock on wood :o). During the evening he started to cry a bit more. It did not feel right but he seemed to have a for him “normal” saturation. Then he started crying a lot, like he had tummy pain. I love disco dancing and usually have high music dancing with the children. I put James favourite song Bombastic and danced with him, which calmed him. Later I said to Nigel, blimey he has the stomach flu and not the operation is off on Tuesday. James calmed down and fell asleep.

December 29th 2007 – 1st of January 2008- Back on feeding tube

I was not feeling well mentally and I had not for a couple of weeks back. I was severely depressed but of course I wanted to handle it myself. Strangely I could not put my finger on anything special I was severely depressed of, naturally much had happened in my life the last 6 months. I am a bubbly lifefull person but I turned in to a depressed zombie who cried because she woke up from sleep or that she survived the trip with the car. Don´t get me wrong, I was not suicidal, I was not ready to kill myself I just hoped it would happen, of course very selfish, but there is a limit to how much you can handle yourself without ventilating. It hit Nigel hard to hear me speak in that way. If it happens again I have promised bot Nigel and myself to grab help, for all of us.
James started to eat less the 29th of December, so we started to write down how much he ate and how much he threw up, because we could see there was a difference. It was Nigel, Mum, Dad, James and I this weekend. We went out for a trip in the car and out hiking in the woods.
We were just about to drive to Copenhagen when James vomited all over is winter-overall. We passed by the mall and I went in to the hysterical sales to buy him a second one. It was not the first time it happened when we were about to go somewhere since James always has vomited more than a heart healthy child. Nigel and I decided to wait to go to the hospital. Maybe it was just a bad day? James was bright and cheery considering. We went to a lovely Italian restaurant in Copenhagen called Vesuvio. We had a lovely time and food. James started to be more anxious. Leaving the restaurant I called ward 67 and they wanted us to come with James at once to the child ER. We stayed there until 2.30 in the morning. Poor Mum and Dad were there with us. We could go home again but promised to return back the next day for a check up.
I went in to child ER at 8.00 in the morning. James was ordinated fluid and the doctor wanted James to stay in overnight,, on New Year Eve! James was loosing fluid and quickly needed fluid to not drop in saturation. But he was not there yet so he was in no danger. I said to the doctor frankly that we would not stay over night with a drip when I could put down a feeding tube on James and feed him myself. The stressed doctor looked really surprised on me and said “eh yes of course I will talk to the cardiologists about it, I have to do another phone call though”. They ended up putting a tube down, gave James some extra fluid, made sure he kept it down and gave me new tube syringes so I could hand feed him until the next day since we did not have any more feeding tube necessaries anymore. We were home at 17.30 and I started New Years dinner. Nigel had driven us to the hospital and later went off to do the grocery shopping which took hours since it was New Years. We had a lovely New Years. James was way back in his flid so I stayed up on and off during night to hand-feed him as slowly as I could.We brought James to ward 67 at 13.00, as I had agreed with the doctor. Cardiologist Thomas Higgins greeted us. James greeted him by vomiting by his shoes and the cardiologist ended up cleaning up the floor. It had been hard for James to keep down the fluid I gave him. He needed it yet again to go in slowly and frequently so his tummy didn´t react so harshly. Our brave boy had eaten by himself the last couple of months which made us very proud. It was not expected of him to do so. Now he was back where he was before. He needed help and he became more flemmy which made his tummy react when fluid came down quickly it was shut back up again. Which is very common among heart babies. Thomas started the ultrasound. James was in a good mood. Thomas who is an American originally asked Nigel if he wanted him to speak English or Swedish, he replied with Swedish please. Five minutes later Nigel turned to me and spoke English which felt ridiculous hahahaha. Thomas ended up explaining the important medicine terms in English to Nigel anyways. James heart looked just splendid and Thomas was pleased. James started baby talking to Thomas and I a giggled and said he probably speaks to you in English which made Thomas laugh. He is a very nice and sympathetic doctor. Thomas arranged for us to have a feeding pump with us home and all the necessaries with it. Now it was James with extras again ;o).
The following two weeks I tried to give James 2 hour meals with the pump but realised he needed a slow flow frequently. In the evenings I usually gave him 20ml to remind him of how to eat himself, plus for him to get some moist in his mouth, but for the most part it came up again just as quick it came down. We would try after the second operation again. He should get stronger again so he can eat by himself again, hopefully. I don’t take anything for granted anymore.

27th of December Check-up and vaccination

Mum and Dad were as usual sweet enough to have the children so Nigel could go with me and James to the hospital. It was the same procedure as always with the vaccination, a lot of tests and waiting. We met Elisabeth and Lotta and we talked for a while. We were a bit concerned because James had been throwing up slightly more than usual. But it had just been a couple of times more in the morning.

Mid December- James has a cold

James had a bit of a cold for some days where I went in to the hospital to check up on him. During this time it was time for an ultrasound and James Dr Peter Munkhammar who is a very sympathetic and talkative doctor, gave him a check up. We agreed I would come in with him if James became worse and coughed more.

Our sweetheart

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December 5th-6th