We didnt get such great news when we arrived this morning. Due to the pulmonary hypertension Emerson was having issues with his blood pressure dropping extremely low. Any movement whether it was a kick or even a small move of his foot would wake him up and cause his blood pressure to drop down to the 50's. It was pretty scary because at one point when it dropped, he started to turn a blueish color. So they had to keep him as still as possible in a paralysis sedative state. He's been given this sedative every 1-2 hours, which was an improvement from every half hour the night before. It was really hard to see him like this. But he did look peaceful and not in pain, which was a little comforting. Sigh.
The doctors also were concerned about the fluid in his lungs. The diuretic meds were not excreting the fluid volume liked they hoped, so they decided to put a chest tube in to drain the fluid. This would be the second chest tube he has, the other one was for his heart. We left the room while they did this procedure, but told us not to worry he would be sedated and not feel it when they inserted it. They could see a great improvement in the fluid, with 50cc excreted today.
They also decided that today was a good day to start nutrition, so he was put on a continuous slow drip of about 10ml per hour.
With Emerson's condition so critical they actually moved out his roommate today. They needed it to be as quiet as possible, even the smallest noises were waking him up. The doctors told us that it seems to be very difficult to keep babies with Down syndrome sedated. There is not scientific reasoning they have found, but with all their patients, almost all babies with Down syndrome need the highest dose of sedation and sometimes that doesnt even work. Interesting. Must be their super extra chromosome power ;)
He did get one thing removed today :) They put these patches on his head, it helped monitor his brain activity. Its usually removed in 24 hours but they kept it on a little longer because of issues he was having with his blood pressure.
We were pretty relieved that they moved out the roommate so we didnt have any extra stress. They didnt have another patient moving in so gave us a little more room. Grant was able to set up his laptop and work in the room with us. The days prior he was working out in the family center. He set up two little work stations for us, where I was suppose to be updating this blog. LOL But I couldnt do anything but just stare at Emerson. :(
But you know Grant, always taking care of us! :)
The doctors also were concerned about the fluid in his lungs. The diuretic meds were not excreting the fluid volume liked they hoped, so they decided to put a chest tube in to drain the fluid. This would be the second chest tube he has, the other one was for his heart. We left the room while they did this procedure, but told us not to worry he would be sedated and not feel it when they inserted it. They could see a great improvement in the fluid, with 50cc excreted today.
They also decided that today was a good day to start nutrition, so he was put on a continuous slow drip of about 10ml per hour.
With Emerson's condition so critical they actually moved out his roommate today. They needed it to be as quiet as possible, even the smallest noises were waking him up. The doctors told us that it seems to be very difficult to keep babies with Down syndrome sedated. There is not scientific reasoning they have found, but with all their patients, almost all babies with Down syndrome need the highest dose of sedation and sometimes that doesnt even work. Interesting. Must be their super extra chromosome power ;)
He did get one thing removed today :) They put these patches on his head, it helped monitor his brain activity. Its usually removed in 24 hours but they kept it on a little longer because of issues he was having with his blood pressure.
We were pretty relieved that they moved out the roommate so we didnt have any extra stress. They didnt have another patient moving in so gave us a little more room. Grant was able to set up his laptop and work in the room with us. The days prior he was working out in the family center. He set up two little work stations for us, where I was suppose to be updating this blog. LOL But I couldnt do anything but just stare at Emerson. :(
But you know Grant, always taking care of us! :)
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