WOW
What a week we’ve had. Zachary hadn’t slept through the night for over seven days as of Wednesday. From Sunday-Tuesday we had to take him off his pump at night, due to his fussiness and a distended tummy. Which of course complicated things…he was getting dehydrated. He went to see his favorite person, “Dr.Gruber” and she confirmed he was getting dehydrated. With that in mind we took him off his Nutren (his calorie supply) and put Pedi-Light in his tube. Over Wednesday night he had to tolerate at least 500ml or else he would be checked in AGAIN to Walnut Creek Kaiser. Thank goodness he took 500ml, and we have slowly been getting him back to his full strength Nutren. Yes, this means that he lost weight AGAIN because he wasn’t getting the calories, but he had to stay hydrated. He had at least TWO seizures from Sunday-Tuesday due to the dehydration. He has been very clingy to mom and doesn’t want to let go.
With all that happening his 24 hour pump arrived! With Zach Man things can’t be that simple. The pump arrived, but the backpack (to hold it in) is on back order for up to three weeks. This is when friends come in handy! Auntie Ali is custom making him a backpack J Anne found a mini one at Wal-Mart (see pics) and Isabelle altered a purse into a backpack. This means he will have a variety! The Wal-Mart Jeep is a little big, but it seems to work for now. Zachary doesn’t like the backpack, but when Dominic puts on his backpack he seems to adjust.
SO HERES THE PLAN….
*We have to monitor Zachary’s weight gain over a two week period with the new pump.
If, he doesn’t show signs of gaining weight he will need to have another surgery to help his body have a better chance of using the calories properly. We have an appointment with his surgeon (she has already done five on him) in two weeks to get her opinion. They are talking about opening his pylorus and bypassing his large intestine and going into his small intestine. However, until we see how the next two weeks go we don’t know what will happen.
*He has too much protein in his urine, so his kidneys are working a little too hard. We have to keep an eye on that to see what to do, and/or how to flush his kidneys while maintaining the tube feedings.
*This Wednesday he gets his eyes dilated to see what the plan is for his left eye.
He has the next week off of his program, so that will give us time to figure out the tube feedings. Dominic and Garrett are loving their programs which keeps them busy and entertained.
Thanks for all the thoughts and ideas!
With all that happening his 24 hour pump arrived! With Zach Man things can’t be that simple. The pump arrived, but the backpack (to hold it in) is on back order for up to three weeks. This is when friends come in handy! Auntie Ali is custom making him a backpack J Anne found a mini one at Wal-Mart (see pics) and Isabelle altered a purse into a backpack. This means he will have a variety! The Wal-Mart Jeep is a little big, but it seems to work for now. Zachary doesn’t like the backpack, but when Dominic puts on his backpack he seems to adjust.
SO HERES THE PLAN….
*We have to monitor Zachary’s weight gain over a two week period with the new pump.
If, he doesn’t show signs of gaining weight he will need to have another surgery to help his body have a better chance of using the calories properly. We have an appointment with his surgeon (she has already done five on him) in two weeks to get her opinion. They are talking about opening his pylorus and bypassing his large intestine and going into his small intestine. However, until we see how the next two weeks go we don’t know what will happen.
*He has too much protein in his urine, so his kidneys are working a little too hard. We have to keep an eye on that to see what to do, and/or how to flush his kidneys while maintaining the tube feedings.
*This Wednesday he gets his eyes dilated to see what the plan is for his left eye.
He has the next week off of his program, so that will give us time to figure out the tube feedings. Dominic and Garrett are loving their programs which keeps them busy and entertained.
Thanks for all the thoughts and ideas!
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