We had an appointment with Louise's cardiac surgeon in the city centre this morning at 7am, so we were up at 5.30am to get ready. At that time there was little or no traffic so we were up in no time. Our neighbour was heading to work as we were getting into the car and I guessed he's be worried to see us leaving so early with the baby and would think she'd become ill..he was till I told them later! Of course both John and I forgot which street number the appointment was at and after parking we went up and down the street peering at the names on the doorbells of the lovely old Georgian buildings opposite the Mater hospital (one of Dublin's main hospitals) where many of the doctors have their rooms. I was just ringing home to wake one of the girls to check the appointment letter when we spotted our surgeon inside one of the buildings peering at a troublesome alarm which had just gone off. In we went...no queue at that hour of the morning.
The appointment was pretty straightforward, the doctor went through what the operation would entail and drew another diagram for us...I'm hoping eventually to learn the anatomy of the heart properly, I'm sorry I didn't listen a bit better when we were studying it in school!! He thinks Louise is a very good candidate for the op and he too thought she was very interactive, (she was busy admiring his chandeliers, probably wondering why we still have lightbulbs hanging in some of our own rooms when we should be finished the house by now!) The groundwork has been prepared by the band put on the aorta which has protected her lungs for the last while, so now she's ready for the Glenn procedure . We're in the happy position of her not being unwell and so can more or less choose when the surgery takes place and taking into account his own holidays etc he's suggested the second two weeks of August.
Loiuse will be taken into hospital 2-3 days in advance and have her bloods, scans and so on done in preparation. The surgery will take about four hours and afterwards she'll be in ICU for about 3-4 days with the aim of taking her off the breathing tube as quickly as possible. She'll be on the heart/lung machine for a while during the operation-I think that means they stop the heart :-( . She'll also receive a blood transfusion as her blood pressure will drop dramatically. I considered asking him could they check if MY blood would match so she could get mine but then didn't. I'm happy enough about that as the screening process in Ireland is excellent now. It'll be a bit weird thinking of someone else's blood in her all the same..it's a minor issue though-people have received my blood in the past, maybe even somebody's little baby. I must start donating blood again, I've gotten out of the habit. After the operation Louise will have the (troublesome) chest drain in for a lot longer than after the last op because fluid is known to build up after this procedure. She won't need to be in special care though and will be back on the ward. She may then be put on aspirin to ward off blood clots around the band area, I'm not sure whether that'll be a lifetime medication or not.
Addressing the risk factors, he said they'd never lost anyone but there is a 5% risk with it..he hurried to add that that means there's a 95% good outcome. John asked him about the suggestion of it triggering off hydrocephalus and he said one of the team had seen that happen all right but we don't know what condition that child had or whether it was Dandy-Walker or if the child already had progressive hydrocephalus. Really, it's not his business to pass on someone else's details as I think that child is currently in the system and we could bump into the family. He didn't seem over concerned though but also said he'd talk to the neurologist. The specialist nurse told me later this morning that the neurologist is lovely and reminds her of John..calm and reassuring and kind (that was a nice thing to say). He did say that he's seen her brain MRI and agreed with me that Louise's cyst is smaller than many I've seen on medical websites. I'm hopeful now.
After this surgery he said we wouldn't need to see him again for a year or two when Louise will be considered for the Fontan procedure to complete the re-plumbing of her blood system.
At the risk of repeating myself..please continue to pray for us, that's what's keeping us going, I'm sure of it.
Now I'm packing (well clearly I'm not, but I should be!) to go on holidays to the West of Ireland tomorrow, I can't wait!!
I was up the town this afternoon getting bits and pieces for the holidays...Rebecca and I popped into the bookshop to start Louise's Early Intervention!!