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. ..it 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.
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. 🙂
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. 🙂
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:)
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…
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.