Monday, May 14, 2012

Update

So it is 6 a.m. and I have been up for at least an hour with baby boy.  He is a good sleeper and slept from 9:30 p.m. to 5 :30 a.m. this morning, so that's not bad.  We have moved him to his own crib in another room away from his sister. This was done for various reasons, mostly because she wakes a lot at night and then he wakes up thinking he is missing the party, and because we are trying to keep baby girl from getting sick.  We noticed that he had a runny nose the other day and our daughter is having major surgery tomorrow.  If she gets sick, surgery is off.

So here is how things have gone since my last update.  Hubby and I went to a preadmission clinic appointment appointment with baby girl on Thursday (10th). It was LONNGG.  We were told that but oh wow.  So we started our day at 6 a.m of course, because that is when she was awake.  We had to be at the hospital for 8:30 a.m.  Oh goodie. That is the same time when commuters are trying to get to work... ugh.  So we get there and were sent to radiology for chest xray , then we return and speak with the surgeon about the actual procedure.  Then we wait... 

What are we waiting for? or who?  It was 20-30 minutes and I wanted to make sure that they remembered we were there.  Luckily the person we were waiting for, (who had been in the room with the surgeon??!) was there when I asked.  So we meet with cardiology, an anesthesiologist, physiotherapists, nursing, and are sent to the blood lab for tests. The end of our day was cardiology nurses, whom we have met, who show us a photo album of a similarly aged patient from years ago.  It was helpful to see the photos so that we know what is "normal" to see.   Still you see a photo of a baby in a hospital bed with numerous tubes and wires attached and go wow... that's ... um... daunting.

So the procedure is a called a ROSS procedure.  It is open heart.  Baby girl will have an incision down her front at the breastbone.  The purpose is to remove the faulty aortic valve and to replace it with her own valve from her pulmonary vein.  That will, in turn, get replaced with tissue from a donor baby.  This tissue will be "neutralized" and will not grow with her.  Her body will eventually recognize it as foreign tissue and attack it with calcium, and calcify this tissue. So years later, baby girl will need repeat surgeries until she is fully grown. This surgery is a great option because it is a repair and not a transplant, meaning that there is no anti rejection drugs or blood thinners needed.  

The surgery is tomorrow.  She is expected to be in hospital for 10 days to 2 weeks.  Hopefully there are no complications, as there is a slight possibility that her body will reject her own tissue.  ... But let's not think of that now.. today we will spend the day with our children and their Oma (my mom) and enjoy our time until we have to give her meds and a bath with special soap in prep for tomorrow's surgery.  We have to have her there for 6 :45 a.m., the surgery starts at 7:45 a.m. and is expected to take 6 hours.  The cardiology nurse agreed that it would be best if we didn't spend the day there waiting but to go home and they would call up when the surgeon is almost done.  It takes 45 minutes to an hour to set her up in the ICU and then we can see her.  So it'll be a long day tomorrow.. but I'm going to focus on today.

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