Great news!

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May 212010

We are back home again after 2 ½ days in hospital, a trip that was not cancelled this time. 🙂

We went in on Tuesday during the day and met with an anesthesiologist who wanted to know a little about Emily and also let us know what would happen during the procedure. We then went back home for a few hours and was back at the ward at 18:00.
We were admitted and were to share a room with a small 2 year old girl who had surgery for cleft palate and her mother.
Since we had been to hospital to have bloodsamples taken and so on last Monday it was now only one line (a needle for drip, etc.) that had to be established. We had some Emla cream at home and were to apply this on Emily but failed on two out of three places (grrrr. was harder than it seems) so the nurse working that day tried to put the needle in the hand which had some Emla on it. But before she even got started she was surtain that it would not work out because she struggled to see any veins (she had a light shining through the hand). She only tried 2 times and it did not work so she went to talk to the doctors to see if it would be possible to put Emily to sleep on gas and then set the line when she was fast asleep.
After a while she came back with bad news. Emily had to have a needle inserted because she needed to be put on a drip at 02:00. Two nurses from another ward were called up to have a look at Emily’s hands and feet and found some great veins on both feet, so they added some Emla and were to come back after 1-1 ½ hours.

A tired little girl with Emlacream on her feet…

Emily became more and more tired but we had to wait for the nurses to get back and insert the needle. When they came back to the ward we went into a treatment room and they once again began looking for veins … What started out so promising became a nightmare. They were unable to put the entrance anywhere, but had to keep trying, poor Emily was hysterical and we were all starting to think , enough now… If we can not find a vein soon we would have to solve it in some other way. As soon as we said, “this is the last attempt” it was in place!
Poor Emily was now sweating profoundly and after a cuddle and a walk around the ward and some more cuddles she fell a sleep and slept heavily, three hours after normal bedtime…
At 02.00 in the morning a nurse came in and attached the drip, but Emily didn’t notice,  she slept like a log:)

She woke again at 5:40 and gave the night nurse who was in the room a  radiant smile and I think the nurses shift ended quite nice:)
At 7 o’clock daddy came back (Only one parent can stay with the child during the night) and we had been trying to get a urine sample from Emily since she woke up but nothing ended up inside the bag .. So eventually we had to take a blood sample to a great grief for Emily. The sample showed some elevated levels of infection so the nurse had to call the doctors to see if they could procede with the angio. 10 minutes before leaving! Our thought of course were: here we go again…, but we were soon reassured, it was ok to continue as planned.

We left her in the operating room after she had gone to sleep in her father’s arms, and now all we could do was wait again …

After about four hours they called and said that everything had gone great, she was doing fine and was on her way to the recoveryroom.
We went there to wait, and soon they came with our little princess in her bed. She was a bit dazed but seemed to feel ok.
Once inside the recovery room she became a bit sad but soon fell asleep again and slept well while the nurses were looking after her.
When she woke again, she did her normal thing … she fired off  a beaming smile at the nurses and us. When the pressure patches were to be removed (air-filled cushions) she was laughing and playing with a mother of another patient, the nurse and us. The nurse said that this was probably the first time she had seen anyone so happy when waking up after surgery and especially when she was removing the large stickers which held the pressure patches in place (she had three). We sat there for a while and, as always, Emily sat and waved to the others in there (parents of other children) and smiled and were quite relaxed. She did of course also have her moments of crying when it suddenly hurt and when the hunger got to her but she behaved so well!

At 15:00 we came back to the ward again and Emily had some välling, her first meal since 19.30 the day before, it was gone in seconds 🙂 After that it did not take long before she was asleep again … Mom and dad also went to sleep for a while. 🙂

Asleep in her Emilybed…

After waking up again she had some more food and then we went out to the coffee / play / waiting room to watch the people. Not a single person was passing by without Emily smiling from ear to ear. Perhaps they were even treated with a little wave of the hand as they were walking past. As always, there were not many she did not manage to charm. 🙂

A happy little girl despite everything…

The evening continued in the same way and controls were made by her 3  1cm-sized incision. Everything looked good and we had a quiet night with further checks made of a cunning stealth night nurse … 🙂

This morning I woke up from a small sound and saw a smiling daughter peek through the bars of the bed. Then she stood up and was pleased that I had noticed that she was awake:)

Good thing the sides could be raised that high but she did look like a little prisoner… 🙂

The morning was used for playing and waiting to be released.
Peekaboo mummy!

Hmmm…any good books here?

We were told that a doctor would talk to us before we could leave but like all doctors, they have a lot to do and of course other things that need to be prioritized. Eventually we got to see a doctor and was released and now we are home again and little one is asleep in her own bed with her little pincushion feet… 

5 in one foot and 4 in the other one…

Well … what is the results from this visit? you might ask…

It looked amazing!
Emilys pulmonary arteries have grown into a really good size and from what they could see it might be possible to turn off / remove the extra vessels (MAPCAs) as the pulmonary arteries are supplying the lungs with the blood they need. According to “our” doctor F  this might be one reason to why Emily is sweatting so much, that there is too much blood to the lungs at this time. But that is nothing that she would feel bad from.
The shunt that was inserted at the last operation is to be removed and hopefully Emily will only need one finishing operation! One final operation to close the hole in the heart and decide the extra vessels be or not be.

That operation will probably take place after the summer but nothing is decided yet. There are many meetings between doctors here in Stockholm and in Lund and there are many small children out there who need help, and Emily is not one of the most urgent cases …

Hugs to you all!

Ps .. Many thanks to all of you wonderful nurses at Dept Q63 making our stay as good it can be! Ds.

 Posted by at 7:37 pm

New plans and partytime.

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May 172010

Since Emily was sick for such a long time and had just gotten well on her birthday we postponed her celebration to the following Saturday.

We received a visit from Emilys grandparents and mother Nina’s uncle Verner with Helen and Nina’s cousin Alexandra.
Lots of gifts and cake! Mmmm .. that was something new for Little one. 🙂


More photos here..

On the Monday (May 10th), we were at the hospital and Emily had a checkup for the next angio. Her saturation was still around 85-86 so that was great. The other exams also looked good and I was thoroughly surprised when she gave blood. They took it from her finger and I was waiting for the scream to come … but..nothing!  Instead, Emily sat and watched as the blood dripped from her finger down into two test tubes. A patch was put on afterwards, and a sticker was added to the collection. What a proud mother she had!

Well, what about the plans? Well, on Tuesday afternoon, we will be signed in to the ward and on Wednesday the angio will be performed. We will have to stay until Thursday and then just wait for the outcome and future planning for surgery in Lund.

You will hear from us again soon.

 Posted by at 7:47 pm

1 year!

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May 172010

Time flies!
It has been a whole year since Emily showed her little wrinkled face for the first time and everything was new, exciting, anxious and nervous …

Just a few days old…

Now she is a little lady with a radiant smile, charming most people and she knows what she wants. 😉
She has been through a lot during this first year and has shown us all that she is a fighter and is strong and that is something that bodes well for the future.

Her tummy virus seems to be going away and we hope it means that we can have her angio done in the near future. Although we do not look forward to things to come, we would like to know the plans, when, how and what it is to be done during her next surgery? We will only know when the angio is done and the doctors have seen what she looks like inside, at this age.

As you might have seen Emily has begun to try her feet out and loves to stand up but so far she has no balance to let go, so she is lucky to have a soft diaper to soften the falls…

There was not much of a celebration today because her tummy is not quite back to normal but perhaps this coming weekend a little girl can get her first taste of cake …

Here are some pictures from the day.
Good thing the paper is so much fun at this age when most of the gifts are necessities .. like clothes. 🙂

Take care!
Hugs from the 3 of us.

 Posted by at 7:34 pm

Change of plans… again…

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May 172010

Well, it certainly never go as planned … No angio this week either.

I (mom Nina) went on a dog show in Arvika this weekend and dad Keith stayed at home with Emily. It was a really nice weekend but unfortunately turned worse and caused a lot of worry for us both and a lot of nursing from Keith.

Emily’s tummy bug came back..big time…

She started vomiting and the diarrhea was back again, when the fever began to rise over 40 we decided that Keith had to go to the emergency room with her. The doctors and nurses examined her and was quick to check that her heart was ok and when Emily started to drink and cheer on a little she and Dad could go back home again when the temperature had gone down.
After only a few hours they were back in the emergency room again because Emily refused to eat or drink and had bad tummypains. After taking more samples, the doctors established what we thought, a tummy virus…  So, nothing we nor they could do about it, we just have to wait it out and make sure that she gets enough fluids in her. She was released from the hospital after improving and keeping the fluids down.

I on the other hand could not do anything but try to give advice over the phone and promised to come home as soon as I could. When I got back home on the Sunday afternoon, I was not met by anyone as I am used to. I thought they might have gone out but the stroller was in its place. Once inside the living room, I understood why…

Poor things … totally exhausted after a tough weekend!

I talked with Anna Karin at Astrid Lindgren Children’s Hospital and we decided that Emily must be fit before the angio. So, now we just have to hope for third time lucky and keep our fingers crossed that the next appointment (not decided yet) will not be canceled as well …

 Posted by at 7:17 pm

Change of plans…

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May 172010

Talked to Astrid Lindgren’s Children’s Hospital today because Emily is not yet well from having a tummybug and we decided to postpone the Angio 1 week .. So the new date will be 3-5 of May instead, not the nicest 1st birthday for little one I can imagine, but we have to make the best of it. The main thing is that we are back home again on the big day.

 Posted by at 7:03 pm

A new blog!

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May 122010

I have finally managed to make a new blog to little one.
This one is a lot easier to work in and I can design a lot more than before.

We’ve been a bit lazy when it comes to update you this past time, but it’s been quiet here at home. Emily has had her syringes with antibodies against the RS virus every 4 weeks and she has done well. We heard that there has been a lot of cases this winter so it was a really good thing that she had the shots.
The next angio (X-ray contrast) is planned for April 26 to 28 and after that the doctors will be able to let us know when the trip to Lund and the next surgery will be planned.
We can see that Emily is starting to get a bit more tired, perhaps it is because she is growing, the heart have a bit more work to do in a bigger body. In any case, she is doing very good, even though she turns blue a bit more frequently than before.

She is starting to have some peculiarities, she also imitates some sounds, has not learned to walk yet but it is not because she is not trying. 🙂 
She also has four small molars, so that is a total of 12 teeth to brush!

Here are some images and movies. Please enjoy. 🙂
 Note .. The sound can be a bit loud, so turn  it down .. 

The bunnyrabbit from Auntie Jacquie in USA.

The pretty dress and matching shorts, also from USA.

Oh oh oh.. beeping like the microwave…

Ahhhhh…drinking is refreshing 🙂

A gift from a dear friend made her day 🙂
Takk Runar!

Not long until we have to chase her…

See some more photos here…   and here…

That’s all for now .. There is (of course) a link to the old blog in the link list.
I still have a lot of work left on the blog but I hope you will enjoy this one as well. 🙂

 Posted by at 4:19 pm