On monday October 19th the time had come to go back home. :)

Since Emily clearly showed signs of a viral infection the doctors in Lund wanted us to go straight to Astrid Lindgren Childrens hospital (ALC) in Stockholm. She still did not eat as well as wanted and they were worried that she might be dehydrated. Before the surgery she had 220 ml every meal, no she would only take 50-80ml.. Not good at all and now we were really glad that she had such a good weight before the surgery.


This was a special made chair that we could use in the pram.
A really good invention but it was a bit difficult getting her out of it again, we could not lift her the way we used to...


She still hates taking her medicine in the mouth, but the syringe is fun to play with..:)

At 11 o'clock it was time for us to leave. We said our goodbye and began the long journey home. Luckily we could once again stay at Anna and Kaz for a much to short but relaxing break...:)

At around 20:30 we arrived in Stockholm and ALC. We were greated by some known and unknown faces and they took the tests needed on Emily. We decided to go home over night and return to the hospital again the next morning. They agreed to that only because we live 10 minutes away, otherwise they would have liked us to stay in the hospital. We could not wait to get back home again and get Emily back to normal surroundings.

After two very long weeks we finally stepped into our flat again...

There has been some examinations today as well, some less fun like taking bloodsamples and some a bit more fun, like the man with the stick-man..:)

The bloodsample was taken this morning and it showed that Emily has some sort of infection, probably a virus, so all we can do is wait for it to go away. She also got some hydrocortisone cream for the rash and it helped a lot, the rash is still there but looks a lot better and is not as red as before and hopefully not as annoying...
She has been eating a lot better, has been a lot happier and has been able to sleep a bit more. So...going home tomorrow is still the plan..


With her favourite toys..

We were lso visited by a neurologist, he checked Emilys reactions and behaviour, as a follow up because of what happened to her after the operation when she had to have heartcompressions for 6½ minutes.. He thought that she looked perfect and we should not be worried about anything. It is really only me and Keith that can tell if she is not developing the way she should and if there is any thing wrong with her and nothing points to that at this moment.:)
That by the way was the man with the stick-man. He took a spatula and drew a face on it, he then tried to get Emily to follow it when he moved it but she was just looking straight at him, so that didn't work..lol..

We also managed to use the inhaler on a sleeping little girl. That was good for both us and her because she really hates it..


We would like to that everyone in the staff, nurses, doctors and everyone else. You have all been amazing andhas managed to take care of us wrecks called parents. We would like to mention a few of you and if you are not mentioned please take no offence, there has been so many new names to remember. Your faces and work are not forgotten in our hearts.

Lindha, you were amazing to all of us from day one and helped us keep our spirits high.
Josefin, you took care of us when we could barely keep our heads above the surface, and above that, you looked after our daughter in intensive care.
Carina, you were taking care of us in the ward and although Emily might not have loved it, we were happy to have you around.
Jens you took care of our daughters heart, need we say more?
Åsa, Lisa, Astrid, Pia, Helena, Anita, Peter, David, Thomas and so many others... Thank you all for what you have done for us!

We will surely meet again.. Of course we would wish we did not have to under these circumstances but we know that Emily will need more surgerys and when that happens, we know that we are safe with all of you around us.


Emilys wonderful nurse Carina saying goodbye...

Well, another day in the right direction..:)

We met the doctors again today and they had some great news to deliver.. We are hopefully going home to Stockholm on Monday! It might be back to the hospital in Stockholm but we don't care about that as long as it is back to our hometown...

Today they did an ultrasound to check the shunt and it looks good. The lungs were x-rayed as well.
She is still a bit wheezy and is on medication 4 times a day. We found out that this could be beacause of the operation. Her lungs have more circulation going through them now and they have to work a bit more than before, a direct cause from this can be some respiratory problems in the beginning.

She also decided that the feedingtube had to go so she just pulled it out..:) She has not been taking the bottle and to try and get her back on track with that she might need to get really hungry, so at that point we decided to let her wait for her food a little bit...  After an hour or so she began showing signs of being hungry so her dad tried the bottle...and.. success! (of course the tube would have been put back if she did not take the bottle for a while).


The little mischievous one, without the tube..:)


Eating again, the right way...

At this moment little one is in her bed blowing bubbles and talking to her dad.. The last sign we were waiting for:)

We also got our other big wish come through today... We had our first walk outside and within 5 minutes Emily was asleep in the pram.:)

We have been in the ward for over a day now and Emily is making progress, she still has a long way to go but is doing better already. She slept well during the night and has been in a good mood today.
She is swetting a lot, another withdrawal symptom and we have to be a bit watchful because she also has diuretic medicine and she must not get dehydrated.. The doctor gave her some medicine to take through the inhalator and she sounds a lot better in her throat now.
She is still not sure about the people in blue or white clothes, she keeps a watchful eye on them when they arrive in the room.:)

She is still not sleeping the way she should, she wakes up easily and fights sleeping so much. Hopefully it will all be better soon.

Tomorrow we might be able to take her outside for a walk and she can see her friends the trees again.

It is small, tiny steps but as long as they are in the right direction we are happy. 

Hugs to all of you..

We have been in our new room for a few hours now, all the tubes and needles are gone (exept one).
Emily has been showing everyone her pretty smile but has also been struggeling. She doesn't really trust the nurses yet, as soon as they touch her she gets upset.. She is also really having a hard time with all the mucus in her throat and as soon as she coughs she starts crying. So, she is not yet relaxed but she will be soon, she just needs time, just like us...


A bit whoozy, but I do recognize my mum..:)

We now have to learn how to pick her up without hurting her, weigh her nappies, feed her through the tube and just be there for her again... It is hard, especially when she gets upset and there is nothing we can do, we can not give her what she wants, the drugs...
She did have a short nap in the new room and now we are just waiting for her to stop fighting tiredness and go to sleep again..




We will have some help tonight, the nightnurses will take care of Emily because she needs checkups every hour. It is really needed, being able to have a proper nightsleep is gold worth...:) We have a lot to come and need to be rested.

Little one is back!

When Keith walked into her room late yesterday he heard someone laughing. He walked up to her bed and there she was, laughing at the nurses. They were playing with her and she was fully enjoying it. :)

This morning when we arrived she was asleep but we were told that she had been awake and happy. She had had a few short naps during the morning and in between she had been playing with the nurses. To let her have the rest she needs we left to go and celebrate with some coffee and a cookie. Even though the prize would have stopped us normaly, it was worth every penny today!


90 Skr for this! (8,50 Euro) You would have though we were still in Stockholm..

Later today we will give Emily a wash and then, if everything goes according to plans, we will go down to the ward. So today will be a busy day.

I will write again as soon as I get some time to do so..

This morning we were met by a girl who had been sleeping a lot during the night. She was still on the respirator but it would be removed during the morning. When that was done we sat with her and tried to calm her down again. Keith held her for a while but she would not settle so we put her back in the bed. I started talking to her to get her to relax and suddenly I saw a glimpse of my little girl again, we had eye contact and she calmed down, then she turned her head and looked at Keith.

She recognized us!

Emily finally looked at us again after all these days... Sure, she was still groggy, but now she reacted to the surroundings, she had not done that before. She alternated between looking at me and her dad. She listened to the melody coming from her toy and looked at the others in the room. She also did what she did before surgery, she was blowing bubbles with her mouth ..:)
When we fed her through the tube Keith also gave her some milk through a syringe in her mouth and she ate and swallowed just the way she should. For the first time in a long time, she was calm, not inconsolable as before ... The nurses were just as happy as we were when they saw the change. Some of them have been there almost every day and has seen how Emily has behaved, and this is a step in the right direction.

When we left her this evening, it was a bit of a struggle again, she had it tough and it is mostly abstinence but also a troublesome throat . After all, she has been intubated 3-4 times which left their mark on her throat, she is still almost without a voice and she is wheezy and surely very sore.

Keith is saying: Two very small steps on the road to recovery...

But, after all, much progress today. Now we hope for more tomorrow ...

Hugs to you all.

Well...today we have been down into the deep, black abyss again..

As you may have noticed when I wrote yesterday, Emily was not feeling so good, every time we came to see her she was upset and crying with her thin, almost non-existent little voice. We sat by her bed a lot and Keith was able to hold her for a short moment while I fed her through the probe. We tried to give her the bottle but she could not take it, just like the dummy, she did not get a grip on them, her tongue lived a life of its own.


Safe in daddys arms...

Yesterday the nurses started to get a bit worried as well. Drugs and tranquilizers were not having the effect they should anymore. She fell asleep for a little while but soon woke up again and was upset. She had had problems with her stomach during this time but it was getting better again, so that should not be the cause of her discomfort.
We came and went many times during the day and when we got there in the afternoon they said that we should let her be alone, do not go up to her at all. They had tried to make it as quiet as possible around her, a screen had been set up and sheets hung over her so that it would be dark and cozy. But she was still crying... For me it was intolerable, to hear her cry, but not be allowed to touch her or comfort her... I know that Keith felt exactly the same way.
By now I had seen her for so many days without seeing "her" so I was almost convinced that something must have gone very wrong. Moreover, the little boy left the room to go down to the ward, but Emily was still there ... I know that he probably had a different diagnosis and perhaps a more simple operation, yet, in my confused brain it meant something was wrong.
We went back to our room, and without being able to help her, we must leave here alone and trust that the nurses were looking after her. (Which we know they do, they are amazing)

This morning we went back to see her. When we got in to the room, 6-8 doctors were standing around her bed and we went out again to let them finish whatever it was they were doing. When they were finished our surgeon and a department doctor were still in there waiting for us.
They said they were worried about her condition and they had to do some more examinations. To begin with, they wanted to do an MRI scan to see if her brain was swollen and to see that nothing had happened to her when she had her "collapse" after the operation. They were concerned that she might have some brain damage...

Once again the black hole opened up underneath us! Everything I feared was brought up and the images of a little happy girl flashed in my mind, a little girl I might not see again, at least not in the same way...

We were in a state of shock when they told us that they would take an EEG, and within 5 hours, they would make the MRI scan and before that, she would be sedated again. Again, like so many times before, we wandered around, aimlessly, we called our families and prepared them for the worst.

I got to talk to a psychologist and she helped me to see it slightly differently, she said that some children react the same way as Emily, but that it did not necessarily mean that they had any damage to the brain. They are simply traumatized by everything that has happened to them. In Emily's case, such a thing as the first attempt to remove the respirator could have been very frightening. She said a lot of other things that really made sense, so I was a bit calmer when I left her ...

The nurse who took care of Emily rang shortly after one o'clock and said they would sedate her for the MRI and that she once again would be put on the respirator. They would let us know when she was back in the ward.

We returned to the ICU at 16:00 and Emily had just arrived back in her room, she finally looked relaxed and she was sleeping deeply. Our surgeon came and talked to us about what they had found.

They could not see anything wrong with Emilys brain! Everything looked like it should, no indication that anything had gone wrong or any swelling in the brain. They could not really explain why Emily behaved as she did, but sometimes some children behave like this and the only thing that helps is time. They need to be left in peace and get back in their own pace. She will now stay as long as she needs in ICU, no plans are made, we are taking each day as it comes.

We've been to hell and back many times now, I know that Emily receives all the help and care they can offer, but despite all the soothing words and examinations, I will not be able to relax until she is in my arms again and is showing signs that she recognizes me .. We have almost reached the edge of the black hole, but we have not reached the top yet, we do so only when we are down in the ward and maybe when we can take our first walk together again ...

Just a short post before heading back to little one..
We have been up to say hi to Emily this morning. She was half awake and was struggeling, very groggy and she has lost most of her voice, she was very upset and sad and the reason for this is not pain as you might think but withdrawal symptoms, she has been on the meds for so many days now that she feels she needs them. Because of this they will probably keep her in ICU over night, just to make sure she gets through this.
This was actually the first day after surgery that I found it hard to see her, without a voice and struggeling with something unknown...

I will get back to you all later tonight..

At this time we have been with Emily several times and once more there are some changes, but nothing close to what we went through yesterday ...

The night was strange, no little girl snoring in her bed, no small noices or loud flatulence .. lol .. Just going out to eat without having her around was unreal.

After breakfast we went to see her and was told that they planned to extubate Emily and that they had started to wake her up a slowly. If everything went according to plan, she would come down to the ward later today or tomorrow.
At half past 11, they started to extubate her and we left the room because they said it might be hard for the parents to be there. We stayed outside for a while but when it dragged on and the staff around Emily increased, we went back inside to see what happened. As soon as we got inside we knew there was something wrong. Emily did not breathe the way she should, she struggled with each breath and they asked if she had had trouble breathing before. Since she had not they said that it probably was due to either the operation itself, or that the tube had been irritating her. We went away for a while to let them work alone and we knew that there was no danger to Emily.

After a while the doctor who extubated Emily called us and said that they had to put her back on the respirator. She had been unable to breathe and her airway was swollen. She will now be in the respirator for 1-2 days before she can come down on the ward.

We have been to see her again and she is back to sleep and all the values look amazing, her saturation is between 85-90, which is a big difference compared to before the operation.


We also finally got her nice gift that was waiting for her down here. Thanks girls!



This little teddy messenger is from Åsa and Sus. It looks so much like Bettan the Irish wolfhound .. lol ..

I took some photos of little one, just to have so that when she gets older we can show her what she went through. I do not intend to put them here because they can be hard to watch and that is not my intention with this blogg..

2009-10-07

Now we have a lot to tell you... I have never been through such an emotional roller coaster, the only thing that comes close is when we were told that Emily had heartproblems ...

It began yesterday ... We were waiting in the ward to talk to the anesthetist and surgeon for the upcoming operation. After talking to the anesthetist at 16 o'clock we were told that there has been some changes. They wanted to make a new CT scan of Emily as they were concerned that there would be a blockage or narrowing of her MAPCA-vessels and that would be the reason that her saturation was dropping. Before this, she must receive an anesthetic and was therefore she was not allowed to eat...

After having this information we met the surgeon who would perform Emily's surgery and he was very accurate, informative and straightforward in how her heart and pulmonary veins look and what he wanted to do during the operation.
Here's a little summary:
Emilys pulmonary veins leading from the heart is underdeveloped , they are there but are very small. Instead, her body has made extra vessel which leads from the aorta to the lungs (MAPCAs). What the surgeon planned to do was to put these extra vessels together into one and lead them to the right place from the heart and then if it was possible close the hole in the heart. It was a big operation that would involve a heart-lung machine and would take most of the day to perform, she would then have to be sedated and kept in intensive care for several days. But the CT scan must be done first so that they had such a clear picture as possible before the surgery, if the vessels were blocked, they must change the plans...

We had to try and entertain Emily as much as we could  during the fast, all she wanted was to get her food, she had not had any food since 12 am. We were told that the scan would be at 18:45 but before that Emily would have to have some sedatives. She received the sedative and was pretty groggy, but she didn't seem to mind, she was singing and entertained us and the nurses all the way to the anesthetist. When the needle was in she was anesthetized and we had to go back to the hotel and wait.
It did not take long before they called and told us that she is awake and she wants her food! :)

We rushed over and found a very indignant, still a bit groggy and very hungry girl. She could not decide whether she would be upset or not, so it took a while to get her to eat the contents of the bottle ..:) After a few songs from dad she calmed down and we had to stay on the cardiology ward overnight. We were also told that the scan had shown that the vessels looked like we had hoped, and no stenosis could be found, so everything were going as planned ..

7.30 today it was time for a bath before surgery and after that it was time for sedatives again. Once again Emily sang and blew bubbles on the way up to surgery, I stayed with her until she fell asleep ...

With heavy steps and one million thoughts in our heads, we returned to the patient hotel, and wandered around the room until we both fell asleep. None of us slept particularly well and woke at the slightest sound.
When the phone rang, we were both surprised, the clock was only 13:45.
The surgeon told us that everything had gone well and that Emily was fine but that they had not been able to do what they had anticipated. Her MAPCA-vessel was too small and the risk of Emily was too big. On the other hand, they had found that Emily's underdeveloped pulmonary artery on one side had grown and it was one of the reasons why she felt so good. They therefore put in a shunt from the jugular vein down to the other side to stimulate the growth of the left side of the pulmonary artery and also to increase the pressure. They also moved one of her extra MAPCAs from the aorta to the pulmonary artery so it ended up in the right place. It had stenosis and if that had not been done the risk of her lung getting damaged were to big.


My, my, my... it was a lot to take in but they did not have to use the heart-lung machine so the operation had not been as great or demanding as we had anticipated and she might just have to stay on the IVA in one day . We were told we could come up and see her within the hour and meet up with the surgeon.

With a lighter step, we went to have some coffee and talked about how good it would be to see little one again and that everything had gone so well.

We walked toward the elevator in the children's hospital when the phone rang ....

It was the ICU ... Emily had become worse and was rushed back in to surgery, and she was still in there.

If there is a devil he could not have been more successful in his intentions to harm us. Again we fell into the abyss, mind spinning in our heads, what had happened, will she survive?

We were told when we came up on the ICU that she was still in the surgery and that her pulse and blood pressure had gone down very dramatically, they had no choice but to open her again to see what happened, she was now stable in the operating room. They did not know how long this would take but they would call as soon as the operation was over.

We wandered out on the town in order to dispel thoughts, none of us said very much, words were just not there ...
Shortly after 16:00 the surgeon rang and said that Emily was now stable again and the operation was over, and he could not explain what had happened, everything looked really good when he opened her up. We were invited over to meet him, and then Emily.

We went back to the ICU and got to meet the surgeon. He told us that Emily had only been inside the ICU for a short while when her heart rate had dropped and he was right near when they rang and they had rushed into surgery again. He himself was a bit shocked at what had happened, it could be that one of the drainage had been pressed against the heart and caused it all. He said they had woken Emily up a while after the last surgery and she seemed to be ok, he did not think this would pose no further problems for her.
What this means is more future operations, more investigation and that the hole in the heart is still there... I myself worry about whether she has received some injurys, because of what happened .. Not until she is awake (hopefully tomorrow) I will be able to relax.

Now finally we have got to see and kiss our little girl ... She was now re-sedated and on a respirator. She looked so small and delicate where she slept with all the tubes coming out of her. We will see her soon again but right now we have to find our footing and gather strength.

I know it might be much reading and a bit messy and vague ... I'm sure you will understand that after what we have gone through today I had not even thought about writing anything here ... But I know there are many out there who are wondering, I want to let you all know how it is right now and I will write more soon ...

2009-10-05

Now that I have the opportunity again I'll write a bit more than before because little one has finally gone to sleep after having loooots of fun by her self in the crib,  loudly may well be said:)


We began the trip to Lund on sunday morning and luckily Emily likes the car and can handle fairly large distances.
Sometimes it is too much for a little girl though...

Even if it is in the middle of the game and dad is singing in the background, you get soooo tired sometimes...

We got a wonderful break just over half way when we stopped at Anna and Kaz. Thank you both, you are the best.:)

We arrived in Lund at 18 o'clock and checked in to the patient hotel. Unfortunately we missed dinner, but got us some sandwiches and soon we all slept well ..

At 8:40 on Monday morning it was time for the chest radiograph. Everything went fine until Emily got on the bench, then she would not have it any more. Luckily, the pictures will come out better if the child is crying so that was just fine then ..:)
After that it was time to go to the ward and sign in. We got to meet the staff and the saturation was checked again (now it was down to 78-79), she weighed (7560g) and then it was time for the hard bit... Blood samples ..
It was taken from her head and a very upset Emily gave blood to 6 small tubes, then they checked the heart with ECG and UCG (ultrasoundcardiografi). When that was done we had some free time so we went down to town to get mobile broadband, do I have to say that Emily slept like a log for several hours in her pram?


In the borrowed pram and her still very much toooo big overalls...:)

Once back in the hospital after a flying visit in the center we were told that the operation is postponed until this Wednesday and we will meet the surgeon and staff from the ICU tomorrow instead of today so that it will come close to the operation. Back to the ward again 15.00 tomorrow.

So .. To be continued....


Emily and dad are relaxing in the hotelroom while mum gets the internet set up..

2009-10-05

We arrived at Lund yesterday afternoon and was almost blewn off the road when we got out of the car... Emily was not impressed and she missed the comfort of her pram.. We could borrow a pram from the hospital today and she has been sleeping for a looooong time now:)

When we checked in to the patienthotel we were told that they did not have any internet for us to use (!!) the same in the hospital... So today we have been out to get wireless modems..:)

This is just a short message to you all, I will write more tonight if I can, but I can already tell you that the operation has been postponed until wednesday, unless anything else happens.