Home again! It is good, and not so good..

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Nov 242010

Yesterday morning started with breakfast at the patient hotel and a sarcastic woman behind the counter. We had the nerve to ask her if we could have a cup for Emily rinsed out, after helping us with that she came up to me, put her hand on my shoulder and with her whole hand she pointed and said: there is a bathroom there..and there..and you can rinse the cup out in there in the future. Grrrrrrrrrrrrrr…

We had an appointment at the ward at 9 to be released from the hospital. At 9:20 a doctor (that we had never seen before) came up to us and explained that she was releasing Emily and that she had all the papers needed for this, papers that the doctor that had attended Emily had written (??!) She started out ok but soon said some stupid things that really made me angry. She also talked to me like I was a little girl that should be told what to do because I didn’t know better. For the second time this day I had someone talking to me like I was a lesser being…

After finally being signed out we started our trip to Anna and Björn. It started snowing a bit but it is November in Sweden so who was surprised?  Some warningsigns were up regarding the bridge across to Denmark but I didnt think much of it.
We arrived safely and had great time with our friends before starting the trip back to Stockholm again at around 19:00. We planned to be back home around 23:30 and that was after talking to my parents who had been driving past 4 big lorrys in the ditch in just a short period of time just outside Stockholm. They warned us about the roads and we listened, of course but we so wanted to get back home so we started the journey as planned. They were absolutely rigt, the roads were awful.. And the lorrydrivers were terrifying, 2 of them almost had us off the road and if not off the road, under their tires…

We finally arrived home at 02 in the morning. We were asleep around 03 and up again in the early morning. Emily had her medicine at 8 and I thought she felt a bit warm but thought that it was probably just the fact that her saturation was so good now and I was not used to it. She was grumpy, sad and after a walk she was fast a sleep, not at all the Ems we know.. As soon as she woke up I took her temperature and she had a fever. This was 2 hours after her painkiller so that was not ok. I called our nurse at the hospital here in Stockholm and she spoke to a doctor who told us to come right in.
Emily had blood taken, and ultrasound was done to determine if there was any fluids around the heart (there were nothing) and after the doctor had fully checked Emily we were sent for a chest x-ray.
When the answer came back it showed that Ems har got a pneumonia… She now has to have antibiotics and the inhaler again and on friday we are going back to see the doctor. 
So now all we can do is try to get her to eat and drink as she should and just keep an eye on her of course, if it gets worse, back to the hospital again.

Hugs to you all, we will keep u all up to date.

 Posted by at 8:21 pm
Nov 222010
All 3 of us are back at the hotel now and we are going to sleep here tonight. We are on leave from the ward. 🙂 This means that we can go home tomorrow! It is amazing how quickly our little princess recovers.

Yesterday the last annoying cord were removed, the one in her tummy that went up to the heart so that a pacemaker could be used if needed. We did an ultrasound and everything looked great except for a small leak in the new valve. This is not unusual according to the doctor and they will need to keep an eye on it but it usually does not indicate any problems, and especially not when you’re as young as Emily. It could mean that the valve needs to be replaced a bit earlier than expected, but we are not going to think about that now. At the moment we are just so happy that everything went so good this week and we will need to help Emily to walk properly again. She would run if she had the option but that would mean that she fell almost immediately because she has no balance at the moment and the body has not recovered yet, it is still weak, although her spirit is extremely strong. 🙂

Today, a chest x-ray was taken and when the answers were in and everything looked good, no fluid anywhere, they could remove that last little awkward needle in the foot. Now it’s just as Emily again, no wires or needles. We went out for a bite to eat and Emily was delighted to get people watching again. True to her habit she said hello to everyone she saw and played peekaboo with people nearby. She is just lovely our little Ems!

A little treat after being such an amazing girl!

After a short nap at the hotel she woke up and looked around, very confused … Where was she? She calmed down as soon as she saw us, but one can only imagine everything that must be spinning in her little head, so much has happened in so little time. This time, she has shown no signs of having been traumatized by her stay here and she has not been afraid of the nurses, even though it has beenpainful many times …

Hard to believe that is less than a week since the operation…

Tomorrow we will be going home again and hopefully we can make a short stop at Anna and Björn again.

We have had a good stay here, maybe some small disagreements with some nurse, but the fact is we react the way we do because this is our daughter, our little girl that we just want the best for, even though it might not be in line with how you would think as a trained medical personnel. We are extremely grateful for all the help, all the care and all the work done by all the personnel at BIVA and Dep. 67. I hope and believe that you can take a little dispute from us parents. Sometimes we feel a bit left outside regarding everything that is happening. We get everything delivered to the room but do not know half of what is happening. We will question and wonder and perhaps also find that some things are a bit strange because we are not as familiar with all of this as you all are … No matter what, we want to send a BIG THANK YOU to you all!

Tomorrow we will be released and recieve all the needed paperwork.

We will get back to you all when we are back in Stockholm.

 Posted by at 8:53 pm

A lot going on..

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Nov 202010

Almost all the annoying tubes and patches are gone now. The feeding tube was removed, to our great joy, but it also made things a bit more difficult. Now we have a hard time getting the medicine in her, but on the other hand, maybe her slightly swollen eye will get better and the itching stop.
The also removed the patch over the wound and took an ECG. It looked great and her saturation seems to have landed at 97-100 (wow!) Tomorrow they will hopefully take away the cables that goes to the heart just in case they would have to switch on an external pacemaker and, finally, if everything looks good, they will remove the final needle, in her foot.

Emily has also been out for a walk and got some nice fresh air in her lungs. Unfortunatelly we can not let her walk on her own yet, mostly because of the needle in her foot, it is to painful.

Reading with daddy..                                    Trying my legs again.

Look, almost back to normal!                   Fist walk in a while, nice with fresh air!They have also decided that we will be going home in the beginning of next week!

A decision that we have received with mixed feelings .. Yes, Emily has recovered incredibly fast but she still needs strong painkillers from time to time. We are struggling to get her to eat as she should, and sleep is almost nonexistent. After all, not even a week ago, she was subject to a seven-hour surgery and already she will be fit for fight and ready for the long journey home again. (?)
We want nothing more than to come home and back to our routines and security but it feels insecure.

I will write again tomorrow and let you all know about the plans for going back home.
Hugs to you all!

I am trying to solve the trouble I have with the videoalbum, there will be some new videos soon to when that is fixed.

 Posted by at 9:57 pm

Big steps forward.

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Nov 192010

We have been down at ward 67  for almost a day now. The first hours are tough because you have to switch from Emily having 24 hours of attention from the nurses to being a nurse yourself.. Don’t get me wrong, there are nurses here in the ward all the time, wonderful girls who take care of us and little one but it is us who has to watch over her all the time in the room now and it’s hard when you are afraid to hurt her and when she till has the drainage. And above all, it’s such a drastic change that you become unsure of yourself as a parent ..

But, everything has gone really really good, Emily has been sitting with us several times and would if she was allowed get down and walk around:) We have become much calmer today and they are going to remove the drainage which means that we can take Ems for a small tour aroud the ward. She is of course still very tired, she gets pain relief and many other medications, and we are waiting and waiting for her stomach to get going again, because that will of course hurt as well if it is not working properly.



Thank you for all your thoughts! Little one has had so many kisses sent to her she will soon drown..lol..

 Posted by at 9:44 am

Time to go to the ward.

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Nov 182010

This morning when we arrived at ICU Ems was just relaxing in her bed looking calmly on all the nurses walking up and down the room. She was a bit grumpy when she saw us and wanted to be soothed. Unfortunately, she was not allowed any food because they were planning to remove some tubes and she needed to get some seditive, so that of course contributed to her being upset.
After an X-ray of the lungs in the morning they decided that the drainage would stay for at least one more day but the tubes in the jugular vein and in the artery in the wrist could be removed. Her saturation oscillate quite strongly, and she is dependent on oxygen, but this is normal after  a heart surgery as it tend to accumulate fluid around the lungs.
After the tubes had been removed she were allowed some food and she almost ripped the bottle out of  my hand.. 🙂

We are now waiting for her to go down to the ward, we will update you soon again!

 Posted by at 10:08 am


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Nov 172010

We have just been to se Emily at ICU and were greeted by “mommy … mommy …” and in the bed is a little girl eating from the bottle! Sad and confused but said “more” and ate her food greedily. She was awake, but is not quite with us yet,  unfortunatelly we are not really helping right now because mom and dad means that you can be really sad, they way you only get when your parents are around.
So, for tonight, little one will have to be left to have some peace and quiet without us, because the more she rests and sleeps the faster she will be back and fully awake. Feels hard to leave her, but of course they will call on us if we are needed and we have to get some rest ourselves before going down to the ward where it will be us taking care of her most of the time.

A hungry little girl!

Night night, i’ll write more tomorrow.

 Posted by at 8:30 pm

No ventilator.

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Nov 172010

Our concern that it would be like last year with extreme problems to extubate were luckily unfounded. They called this morning and said they would take her off the respirator so we decided to stay away in case anything went wrong.
When we got there she was sleeping like a little princess, without a ventilator. 🙂

She is about to wake up but ends up in a world in between and is given some help to go back to sleep so that it will be easier and easier for her to get into “our world” every time she wakes up. She is, as usual, a little fighter, she mumbles and waves her armes around, trying to turn around, and keeps the nurses on edge so that they will be able to stop her in time:)
She has her dog Lucy with her now so that she will feel secure during the small periods of waking up.

Everything looks good and if it goes according to the plan, they will remove the drains and the tubes going into the neck and arm. Then we’ll see what happens but we will hopefully be down in the ward again soon and can start working on getting back to normal. Or, normal…  she now has a saturation that she has never experienced so it will probably be full speed and nothing else!

A saturation of 95 this morning, magic in our eyes.. 🙂After a night spent mostly in the emergency room because Keith’s knee is not as it should we did not get to bed until 4 o’clock in the morning so to get to wake up to a phonecall telling us that little one is doing good was like a refill of energy, it keeps us going a good time!

I will keep u all up to date.

 Posted by at 12:24 pm

She is fine!

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Nov 162010

We have been to seen our little girl in intensive care. She looked so good! All pink and nice with a saturation of 97 (!!), not bluish with a saturation of 84 ..
The surgeon was pleased with the operation and he were able to do everything that was planned. So for now little one will be asleep until tomorrow and then they will try to remove the ventilator. We keep our fingers crossed that it will go a lot better this time than last year … She woke for a second when we arrived and said hello, but quickly fell asleep again and we left Lucy the dog with her so that she feels safe.

More news tomorrow!
Thank you all for your thoughts and strengthening words, it helps a lot more than you might think.
Hugs to you all!

 Posted by at 5:56 pm


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Nov 162010

.. everything feels wrong, so empty and strange.

We handed Emily over to the operation team shortly after 8 this morning. She had been given a sedative injection at the ward so she was little high and whoozy and probably saw a lot of stars and other fun stuff flying around. As usual, she was happy and curious about everything around her all the way up until the medicine made her go to sleep properly on the operating table. She made us all sing “little snail” before she fell asleep. (her favourite song right now)

We walked away and now that she was not with us anymore, we could let our feelings out and just let the tears flow ..
Back at the patient hotel, one can not help but think about the poor planning of everything .. Here we are with the thoughts swirling in our heads, sad, confused and worried while the rest of the dining room is full of happy new parents with their little bundles right next to them.. Yes, believe it or not, we share this hotel with the maternity ward (!) And just a bit further away sits a man who is struggeling with cancer and has lost his voice.
Where is the logic in this? Why mix the biggest contrasts in life in the same place?

At the moment we are sat in the room, trying to calm the mind, trying to do other things to not just think about everything that can go wrong … It is, after all, the way the brain works, you do not think of all the good things in a situation like this, you think the opposite.

Love and hugs!

This is how tired a little girl will get after a whole day of tests and examinations.. (yesterday)

 Posted by at 9:14 am
Nov 152010

Well… we are back again, in Lund. It’s time for Emily’s second major surgery.

We left home last Friday evening and arrived at Anna and Björns late Friday night. Emily were comfortable with her new friends almost immediately and was not too keen on going to bed again, although it was in the middle of the night. 🙂 We then had a lovely Saturday with our wonderful friends and it was a great relief to think of something else so close to surgery. Emily was pampered, just like us. Thank you for being there for us Anna and Bjorn!

Anna, Emily and Björn out on a walk..

On Sunday we continued our journey and arrived in Lund in the afternoon. We checked in at the patient hotel and then we met our very good friend Lindha. Lindha, who was there for us last year at Emily’s first surgery. She came to Lund just to see us (especially little Ems) and we went out to eat together, it did not take long before Emily was comfortable in Lindhas company and soon they were having lots of fun. 🙂

Lindha and Ems at the restaurant.

Relaxing at the hotel.

Today, Monday, it was time to sign in to the ward. We started the day with a chest x-ray and then there was ECG, a saturation check up (it was 83), ultrasound of the heart, blood samples and in the evening we spoke to the anesthetist and Emily’s surgeon.

There is a lot of waiting too…

We were told a lot about the surgery tomorrow. They plan to extend the part of the pulmonary artery that goes in to the heart so that it ends up where it should, they will also put a new valve in there, because the one that she was born with is underdeveloped and could not do the job … If all goes as it should with the valve, they will put her on the heart-lung machine and repair the hole in her heart. They will remove the shunt, which she has right now and also check what her extra vessels (MAPCAs) looks like. Probably they will be left where they are.
Just like the first surgery, they might not be able to do what they have planned, everything depends on how Emily’s body reacts and how the different steps in the operation goes. If they can not do everything now it will be scheduled within 3-6 months. If everything is going according to the plan she will still need more surgery in the future but not until about 10-15 years and then to replace the valve again.

So now we have had a shower and Ems has been washed with special shampoo and soap, and the same will be done tomorrow morning. She is going back to the ward at 7:30 and at 8:10 the time has come to go to surgery. The surgeon said that we should plan for it to take all day tomorrow so we will not be able to do anything other than wait for the phone call that tells us that everything has gone well …

Talk to you soon again.
(More photos here..)

 Posted by at 9:09 pm