Well, we’ve had a few interesting days, not quite what we expected.
We arrived at UCLA Friday afternoon with our bags packed, expecting surgery, a stay in the hospital, etc. Instead, we got sent home within a few minutes. The doctor, Jorje Lazareff took one look at him and said, “why are you here?” We tried explaining about the hydrocephalus, the crankiness, the increase in head circumference…but he said, “this baby doesn’t need an emergency surgery”. He explained to us that if Nathan had hydrocephalus his head would be much larger and misshapen, the veins on his forehead would be bulging, and his fontanel would be hard. As he didn’t have any of these indications, he didn’t think it’s hydrocephalus.
We told him about the diagnosis of holoprosencephaly, and he said that it’s very hard to diagnose from an ultrasound, so it would be best to have an MRI before giving him a diagnosis.
Then, he gave us great news. He said, even if this baby does have holoprosencephaly, he is going to do great, probably have a normal life. He told us that brain damage usually reflects in the face, and as Nathan doesn’t show facial malformations, he didn’t think his condition is too severe. He kept repeating the word “normal” over and over again.
He then sent us home. They are arranging for him to have the MRI this week. Then we will have more clarity about what’s going on with him.
When we got home on Friday, full of joy, we gave him one of his new medications. Soon after, he started screaming hysterically. He screamed almost non-stop all the way till 3pm Saturday. We were worried, so we took him to the pediatrician, who promptly sent us to the hospital. We arrived at the hospital but, by the time they checked him in, gave us a room, and all that, he was finally calming down.
As he calmed down almost 24 hours after we gave him the medication, we realized it was a bad reaction to the drug.
So instead of keeping him at the hospital and exposing him to hospital germs, we decided to take him home. It was kind of a renegade move, as the doctor reccommended for us to stay, so we had to sign a waiver saying we were acting against medical consent. But it seemed senseless to keep him there as he was doing much better and probably didn’t really need to be there.
So we came home last night, and he was feeling a lot better.
It seems that whatever’s been making him cry so much is starting to go away, as he’s having more moments of peace and he’s not crying so intensely all the time.
He’s starting to coo more and more and he loves to look around and check things out. Every good moment he has brings us soo much joy, it’s so nice to see him peaceful and happy.
Once we do the MRI we will post the results, hopefully sometime this week.
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