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.
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.
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.
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.
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.
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.
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.
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 …