I took him straight to his paediatrician who confirmed he definitely had bad congestion but he was concerned about the monitor going off. He admitted Michael to hospital for apnea observation and we agreed to him running a battery of tests on Michael which would have to be done anyway at some or other time.
So, off we went to Mediclinic Durbanville for a 48 hour stay. There were blood tests, X-rays, ultrasound, an ECG and an appointment with a paediatric cardiologist for a thorough look at his heart. All the tests were fine albeit tiring and Michael was quite the trooper with all the positioning, poking and prodding going on.
The big one was the cardiologist's appointment. The little guy slept through his cardiac ultrasound and it was a good thing because it gave us time to process the news we received.
Michael has an atrioventricular septal defect. Children with Trisomy 21 often have a heart condition and he has one of the more common varieties. I've included a picture which illustrates the defect here.
In Michael's case, the defect is quite complicated so a full repair won't happen until he's a toddler. To help his body cope, he is getting a pulmonary artery banding. This will reduce the excess blood flowing through his lungs to only what he needs and take some strain off his heart until the repair can happen. He still has good blood flow and little mixing but the defect is creating flow imbalances to his other organs and his heart is enlarged.
When we heard this, we weren't even shocked. We were kind of expecting things to go wrong and to hear more bad news. However, this is something that can be fixed and he has the best paediatric heart surgeon in the country. It's not great knowing our infant is undergoing major surgery but it's better than him suffering through heart failure which is the eventual complication of his defect.
The surgery is taking place on 25 July at Christiaan Barnard Memorial hospital and it's going to be a 7-10 day stay while he recovers. The surgeon, Dr Susan Vosloo, is very confident there will be no problems and he is healthy in every other way so he's in good condition for surgery.
We aren't nervous (yet) for the surgery, more concerned about Michael after. It's not nice to see a little baby who cannot communicate that he is pain and we wonder how he'll be fed when the incision is on his side. Dr Vosloo assured us that he will be pain free or comfortable at the least as they like to make sure the babies are cared for. As for feeding, well we'll have to see how to cross that bridge when we get there.
It's going to be weird leaving Michael in ICU while I come home but I am learning to let go and trust in others tasked with caring for this little person. I have come around to the conclusion that what must be will be and all I can do is have faith.
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