Nu har det gått ett tag sedan kateteriseringen och idag var det återbesök för att se att allt var som det skulle. Det var det, flödet i de vidgade kärlen var bra fortfarande och de hade hållit sig vidgade 🙂
Vi frågade också om att Ems får kramp i fötterna från och till och blev ordinerade, håll i er… chips 🙂 Varför då undrar ni säkert, jo för att få upp salthalten i kroppen eftersom det kan vara en av orsakerna, speciellt under de varma dagarna när hon svettas mycket.
Nästa besök blir efter sommaren.

Vi har också firat Midsommar, lite lugnt i år, ute hos mormor och morfar. Men det var kallt, sommaren verkar ha gått från högsommar värme med 30 grader tillbaka till vår med 10-15 grader inte alls kul. Men tjejerna hade kul ändå. Och krans i håret måste man ju ha 🙂

It has been a while since the catheterisation and today it was time to go back to the hospital to make sure that everything was as it should.  It was, the flow in the dilated vessels were still good and they had remained dilated 🙂
We also asked about Ems getting cramps in her feet now and again, and was ordained, hold on … crisps 🙂 Why you may ask, well to bring the saline levels up because that could be a cause, especially during the hot days when she sweats a lot.
Next visit will be after the summer.

We have also celebrated Midsummer, out at grandma and grandpas. But it was cold, the summer seems to have gone from absolute summer heat with 30 degrees back to spring with 10-15 degrees, not fun at all... But the girls had fun anyway. And the wreath in the hair is a must at Midsummer 🙂

Klockan 5 i morse vaknade en pigg och väldigt hungrig Emily. Efter en jobbig natt med obekväm soffa/säng, ventilation som låter som en frisk höststorm och ett dropp som gav ifrån sig ett par varningar under natten så var man inte precis fräsch som en nyponros 😉 Men skruttan var pigg!
När jag hade fått dra mig en liten stund så fick hon pyssla med telefonen tills sköterskan kom in med handdukar och ny skjorta så att Ems kunde duscha kl 6.

Efter duschen tog vi en liten promenad i korridorerna för att röra på benen som snart skulle sova så länge.

Klockan 7:45 började vi promenaden genom kulverten till Torax och operationssalen. Hon kopplades upp och var på strålande humör. Pratade, sjöng, skrattade och busade. Jag sade till sköterskan att man kunde nästan tro att hon hade fått någon pre medicinering, hon skrattade och sade att hon minsann inte hade givit något. 🙂
Till slut somnade hon gott och jag gick upp och mötte Keith på avdelningen.

Efter frukostfikan så tog vi en promenad och precis utanför KS så ligger ju Norra begravningsplatsen, en enorm kyrkogård med många kända och andra mindre kända personers sista viloplats. Bl.a min farmor och farfar och farfars bror ligger begravda där så vi gick dit för att säga hej.
Tyvärr så är deras grav inte vidare bra skött och mina föräldrar bor långt bort och de andra i släkten har svårt att ta sig dit också så vi tänkte att när vi ändå var där så kunde vi försöka göra lite fint. Så en säck jord och lite fix och det blev bättre, men inte helt bra, det får vi ordna när det finns mer möjligheter.

Före och efter.

Klockan 13 ringde de och sade att Emily mådde bra men att det skulle dra ut på tiden lite. Sedan ringde de igen kl 15 och sade att nu var hon på väg till uppvaket, så nu kunde vi komma.
När vi kom in så var hon vaken och det berodde mestadels på att hon åter igen mådde väldigt illa och kräktes. Hon hade fått 2 olika mediciner för att stoppa det men det verkade inte hjälpa. Efter ett tag beslutade de att ge henne en tredje medicin och sade att fungerar inte den så finns det inget att göra. Som tur var fungerade den och det tog inte långs stund innan hon sov djupt igen.

När klockan blev 16 var det dags att börja tappa ur luftkuddarna som används som tryckförband i ljumskarna där de har gått in i kärlen och då vaknade hon till igen och fick lite att sysselsätta sig med av sköterskorna.

När klockan blev 18 plockades tryckförbanden bort och man kollade så att det inte blev någon blödning och efter det ( och 2 st piggelin) så fick vi komma upp på avdelningen igen.

Nu ligger en mätt och belåten Emily och sover och jag hoppas hon gör det hela natten 🙂

Nå..hur gick det då?
Jo, läkaren Bo berättade att man inte satte i någon stent, vad han kunde se så verkade det som att kärlen drar ihop sig från och till. Nu när de gjorde en ballongvidgning så höll sig kärlet öppet och genomströmningen var fin, men sedan drog det ihop sig igen. Man tyckte inte att stenten behövdes just nu utan istället sätter man henne på Trombyl i 3 månader för att se om det hjälper att få kärlen att “slappna av” och om det hjälper Ems att må lite bättre. Så, läkarna var jättenöjda med sitt ingrepp för de lärde sig mycket mer om hur hon ser ut där inne, nu blir det lite tätare kontroller och läkarbesök framöver för att se hur medicinen fungerar.

Tack för alla pussar, kramar och vänliga ord och tankar! <3

Lilla hon som aldrig slutar le 🙂

At 5 o’clock this morning I was woken up a  very hungry Emily. After a quite rough night on an uncomfortable couch / bed, a ventilation system that sounds like an autumn storm and an iv-drip who gave away a couple of warnings during the night I was not exactly fresh as a rosehip;) But little one was spirited!
I stayed in bed a bit longer and she was playing on my phone until the nurse came in with towels and a new shirt so that she could have a shower at 6.
After the shower, we took a walk in the corridors to move the little legs that would soon be sleeping for a long time.
At 7:45 we began the long walk through the culvert to the Thorax and the operating room. She was hooked up to the machines and was in great spirits. She was talking, singing, laughing and teasing. I told the nurse that one could almost believe that she had received some pre -medication, she laughed and said that she had certainly not given anything . :)
Eventually Emily fell asleep and I went back to the ward to meet up with Keith.

After breakfast we went for a walk and just outside the hospital is the North Burial Ground , a huge cemetery with many famous and less famous people ‘s final resting place . My grandmother and grandfather and great uncle on my fathers side are buried there so we went over to say hello.
Unfortunately, their grave is not maintained very well and my parents live far away and the others in the family have a hard time to get there as well so we figured that while we were there we could try to make it look a bit better. A bag of soil and some touch ups and it got better , but it could be nicer, we will try and get it better another time.

At 1 o’clock they called and said that Emily was doing fine but that it would drag on a bit. They called again at 3 o’clock, and said that now she was on her way to the recovery room, and we could go and see her. 
When we got to the recovery room she was awake and that was because she was feeling very sick and vomited. She had received two different medications to stop it but it did not help. After a while they decided to give her a third medicine and said that if that didn’t work then there was nothing else to do. Luckily it worked and it did not take long before she was fast asleep again.

At 4 o’clock, it was time to start deflating the air bags used as a tourniquet in the groin area where they have gone into the vessels and at that time she woke up again and got something to occupy herself with from the nurses.

At 6 o’clock the tourniquets were removed and they checked to see that there was no bleeding, and after that ( and 2 ice lollies )  we got back to the ward again .

Right now a very satisfied Emily is asleep and I hope she sleeps through the night :)

Well .. how did it go ?
Well, the doctor, Bo,  said that they did not put a stent in, from what he could see , it seemed like the vessels contracts now and then.
When they did the angioplasty the vessel stayed open and the flow was fine , but then it shrunk up again . They did not think that the stent was needed right now, but instead they are going to put her on Trombyl for 3 months to see if it helps the vessels to “relax” and if it helps Ems to feel a bit better . So, the doctors were very pleased with the procedure and learned  a lot more about what it looks like in there, now there will be a bit more frequent check ups to see how the medication works on her.

Thanks for all the kisses , hugs and kind words and thoughts! <3

Efter en skön sovmorgon med en liten snarkande Sara i sängen var det dags att göra oss redo för sjukhuset.

Först lämna Sara på förskolan och ett litet hej och ha det bra till vänner och fröknar på Ems avdelning och sedan iväg till Astrid Lindgrens barnsjukhus.
Första stoppet var på provtagningen. Efter att ha pratat med sköterskan bestämdes att vi skulle sätta på Emla och ta prover i armen. Jag protesterade eftersom jag vet att hon inte går att sticka utan brukar se ut som en nåldyna efteråt, men nejdå…det fanns såååå fina blodkärl där.
Så sagt och gjort, på med krämen och sedan vänta minst en timme så vi gick till nästa bokade tid, uppe på barnkardiologen.

Efter att ha lekt och haft kul en stund så fick vi komma in och träffa bästa A-K.

Hon tog ett EKG och förberedde med film och glass innan (!) läkaren kom för att titta på lilla hjärtat.

Han sade att det ser ut som förväntat och att de kommer att kunna se allt de behöver mycket bättre under själva kateteriseringen eftersom det görs en kontraströntgen samtidigt.
De kommer att försöka sätta in stenten, men med tanke på hur det har sett ut tidigare med ärrvävnad just där så kan man inte garantera att det går att göra.

Sedan var det dags att gå ner till provtagningen igen efter att krämen tagits bort.
Om jag säger så här.. det var lika mycket tortyr för mig som för Ems. Det gick inte alls!
Flera stick, hysteriskt gråtande och svettig Emily och 1 provrör av 5 med blod och de beslutade att ge upp. Man måste komma på en annan lösning…

Efter att ha pratat med narkosläkaren och förklarat för honom också att Emily är väldigt svårstucken och att man varit tvungen att söva på gas tidigare så tog han också en titt på hennes armar, händer och fötter och hittade såååååå fina kärl, så det skulle inte bli några problem… Suck…

Nu när vi kom hem så ringde Emilys sköterska A-K och sade att vi måste komma in igen i morgon och försöka sätta en infart för att kunna ta….blodprover…
De måste få proverna innan op. eftersom vid sådana här kateteriseringar så måste man beställa blod om något händer, de går ju trots allt in i hennes blodkärl. Så, håll tummarna för att det går bättre i morgon och oroa er inte, jag kommer att stoppa dem om det blir för mycket, då får de lösa det på något annat sätt!

Eftersom vi ska vara inne kl. 6 på morgonen på onsdag för operationen så försöker vi få en säng på avdelningen redan i morgon kväll, annars blir det tufft för alla i familjen med morgonbestyren.

Nu sitter jag här med båda tjejerna i knät samtidigt som jag skriver och passar på att mysa lite och jag lovar, jag kommer att hålla er uppdaterade. 🙂

After a nice lie-in with little Sara snoring next to me in bed, it was time to get ready to go to the hospital.

First, leave Sara at preschool and drop in to say “hello” and “see you soon” to Emilys friends and teachers and then off to the Astrid Lindgren Children’s Hospital. 
 First stop was to have bloodsamples taken. After talking to the nurse she decided that we would put the Emla Cream on and take the samples from the arm. I objected because I know that she is so difficult to prick and that she usually looks like a pincushion afterwards, but nope … the vessels looked soooooo good. 
 So, all said and done, on with the Emla cream and then we had to wait at least an hour so we went to the next appointment, up to the children cardiologists.

After having played for a while we were greeted by the best nurse ever,  A-K.

She took an ECG and prepared with movie and ice cream before (!) the doctor came to have a look at the little heart.

He said it looks as expected and that they will be able to see everything they need much better during the catheterization because it is an X-ray done at the same time. 
They will attempt to insert the stent, but given what it has looked like in the past with scar tissue right there, they can not guarantee that it is possible to do.

And then it was time to go down to have the samples taken after removing the cream. 
 Ok, íf I put it like this .. it was just as much torture for me as it was for Ems. It didn’t work at all! 
 Multiple pricks, a hysterically crying and sweating Emily and 1 tube out of 5 filled with blood and they finally decided to give up.
There must be another solution …

After talking to the anesthesiologist and explaining to him that Emily is very difficult to prick and that they had to anesthetize her with gas Before, he also had a look at her arms, hands and feet and found suuuuuch nice vessels, there shouln’t be any problems to get a needle in… sigh …

Right now I sit here with two girls on my lap while writing this, taking the opportunity to have a cuddle and I promise, I will keep you posted . 🙂

We are home again now, tired, somewhat wiser, somewhat disappointed, but with a happy and lively girl and that’s the main thing.

On Monday we went to the hospital at 8 o’clock to wait for blood samples to be taken. Emily made ​​her parents proud again, as so many times before. She only said a low ouch when they punctured her finger and then sat and played with a toy while they slowly pressed  the blooddrops down into a couple of test tubes. When she were to go out of the room she unfortunately walked straight into the door, which of course resulted in a sad girl .. to bad after being soo good… The result was a slightly black eye which can be seen on some pictures.

After the bloodsamples we went up to the X-ray to take pictures of her lungs, with a really good nurse that calmly told Ems what she would do and how she wanted Ems it all went great, no tears:)
As usual she charmed everyone in the waiting room, seized the only two teenage boys who sat there and made most people in the waiting room a little happier than they were when they got there:)

Then it was time to go down to the children’s cardiologist and sign in. They had an ECG taken and looked at her heart again with the ultrasound and then we went home at 11 o’clock to eat some dinner and have a short sleep. 13:30 we were back and got to meet the anesthesiologist who wanted to know a little about Emily and told us how things would be done. After that we could to go home and relax.

As Emily would go into surgery as the second patient on Wednesday we did not have to stay over night from Tuesday but had to come in early on Wednesday morning.
So, Wednesday night we woke Emily up at 3 o’clock to have a drink of välling because she had to be fasting from 4.00. We got up at 6 am, and none of ate anything because we did not want to tempt little one. At 6:30 it was time to put on some Emla cream to numb where they planned to put the needle in.

  
With the Emla cream on…                          Ready to go!

We were at the ward at 7:30 in the Astrid Lindgren Children’s Hospital and began to get Ems in order, the Emla cream came off, she had a shower and new hospital clothing. Then it was just to wait a while until they could try to put the needle in.

  
Drawing with daddy…                                 Trying the bed..

  
Some more drawing and looking at the people outside…

As we suspected, they had great difficulty in finding some veins to put the needle in and when we told them how it had been last time, that she was like a needle cushin the nurses did not want to try again, they called on the anesthesia nurses who were the professionals. The surgery should have started at 10 but was postponed until 10:40 and just before 10 the anesthesia nurses came to have a try at putting the needle in Emily. But, they tried only once and then they agreed to what we asked and pretty much demanded.. Insert the needle when she is already asleep. They talked to the team that would take care of Emily during surgery and they agreed to anesthetize her with gas and put the needles in when she was sleeping. No more pain for Ems 🙂

At 10:20 we started going through culverts to the operating room.

On our way to the operation…

After being with her until she fell asleep we left her in the team’s hands and walked away for the long wait …
As the clock neared 15 they came into the room at the ward and said that she was on her way to the recovery room and everything seemed to have gone well. We went down and waited to be able to come in and see her.
Once we got in there she just lay looking in her bed, a little dizzy but calm and just happy to see us again. She was a little sick to beging with when she got up on her father’s lap, but it went away with some medicines and after 2 ½ hours in the recovery room (and an icelolly, which they are not supposed to eat in there .. lol ..) we went back up to the ward again.

  
Safe with daddy again…                              Yummy, an icelolly 🙂

She was soon herself again, a little tired but if she’d been allowed she would have run around and talked to everyone she saw. Now it was not okay because of the wound so she had to sit quietly with us and have some yogurt and then some chicken & snacks.

  
Why have 1 cracker when you can have 2?   Cuddles with mommy..

She finally fell asleep , a bit later than usual and slept pretty well, dad did not stay overnight so when he came back in the morning it was a happy girl who ran to meet him:) We had breakfast together and then our doctor Felicia talked about what she had heard and read about the surgery and what they had been able to and what not.

  
Tired and a bit swollen…                            On her way to get a sticker for being good 🙂

They had managed to widen the left pulmonary artery with a balloon with tiny little knives that cut tiny grooves in the scar tissue so that the artery may widen despite the scars. The right pulmonary artery had not been able to expand because they had moved one of the MACPA-vessels to that artery to increase the flow (they did that during her first surgery in Lund), so the vessels were to close and they could not use the cutting balloon and the other balloon they tried had just expanded on both sides of the narrow part so it did not work and they left that side  for now. The lungs have all the blood they need, so it’s okay but when it is narrow, like  now, it means that the right ventricle of the heart must work harder, which can affect the heart in the long run and none of us want that to happen … They will discuss what they want to do in the future, there is no question that something has to be done, and additional surgery is to be expected. But when and how that is going to be, nobody knows yet. We have to keep an eye on Emily so that her heart does not have to work too hard and that the narrowing of the artery is not to great on the right side, if that happens the next surgery would be sooner rather than later. But as I said, at this moment we don’t know nothing … Our next visit to the hospital will be in about a month to see that the left artery is not going back to the previous narrow size but stays the nice size and with the good flow it has now.

And then, she had some fun with bestest Anna Karin and another icecream 🙂 After that we were allowed to go home after a quick look at her surgical wound in the groin.

  
Some cuddles and drawing with the best nurse Anna Karin 🙂

Thank you for this time, all of you wonderful people who work at ward 63 and the children cardiologists and of course everyone who took care of Ems during the operation. See you again in the future, unfortunately …

Hugs!

Last Thursday, February 24th we finally went to England. It was Emily’s first time on a plane and she did quite exemplary. True to her habit, she made friends on the plane, which meant she got to listen to some music in someone’s headphones and sit and talk with a flight stewardess in the back of the plane. 🙂

Going through some stuff with the flight stewardess..

After we landed at Heathrow, we were picked up by Jake and went to Reading to stay the night at friends. We were well taken care of  by Tasha, the daughter of the family, and Stanley, the dog in the family.

Tasha & Emily.

Stanley

After a night in Reading we went to Keith’s parents. It was the first time Emily met her grandparents but it didn’t take more than a few minutes before she sat safely on her grandfather’s knee. Emilys grandparents had decided that we were going on a small shopping trip, so after some tea and chatting, we went out to the shops. Emily got almost a whole new wardrobe back with her! How I wish that it could be the same supply and prices in Sweden!

Pretty new clothes!

On the Saturday it was time to meet more friends and family. Sarah, Matt and Chris came to visit and then Keith’s sister Karen and her family came. Wow .. lots of people! We thought that Emily might find that there was too many new faces at once, but no .. It didn’t take long before she was running around, greeting them all and quickly held on to the two young men who were with them (boyfriends to Karens daughters):)
Hmmm … we do not really know where this will end but boys / guys / men are her absolute favorites at the moment, they can have her toys, she sits on their lap and they are asked to carry her, etc., etc..
We really hope to see you all again soon!

Keith, Matthew, Emily, Sarah, Chris and in the background, the family.

Josh & Emily

On Sunday it was time to go back to Reading again. But first we had make a stop in one more town and meet some special guys. We went to Oxford and met Ian and Russell. Through our online game, we have known each other for ~ 4 years but have never met before. It was so fun and we just wish it had been for a bit longer. Hopefully, we have set their minds to come and visit us in the future:)
Emily was a bit shy at first, but .. because they were of the male sex it didn’t take long until she was best friends with them as well.

Ian and Rus

Cool babe in Ians hat 🙂

When you sit in a pub like that during daytime, having a coffee or a beer, it’s really something that you miss not being able to do at home in Sweden. Just being able to walk in at a place anywhere without being super-chic in a cafe, or wait until evening to get into a bar where all the drunk and and loud people are. It is such a wonderfully simple way to just sit and talk and hang out with no obligation. Bring your family and spend time with other people … We are too rigid in Sweden.

After Oxford, it was back to Reading and one more night before it was time to go home again. A suitcase became two on the way home and the second flight that went really well with Emily was completed. On Monday evening we were back home in cold, unplowed  Sweden again. Now we’re just waiting to see spring here too soon. I will end this post with some wonderful pictures, without any snow .. 😉

We had a wonderful trip and hope to be back soon again!
Lots of hugs to you all!