For those who don’t know…Alex is now at Fairfax Women’s and Childrens Center on gallows rd.
ALEXANDER CARLTON BAKER
FAIRFAX CHILDRENS HOSPITAL
On Saturday night the increased his formula strength to 100 % and within 30 minutes I could see a difference in him. He was fussy , restless, and irritated. he nurse and I both tried paging the Dr to see about decreaseing it back down but she never answered her pages. We later found out she was in the lounge watching the olympics!! Anyways…since she didnt answer we had to wait until the morning to see the next Dr about decreasing it. The took him down to 75% strenght for the day but we started seeing blood in his diapers. Last week, we were told there was trace amounts of blood in his stools but it wasn’t visible to the naked eye. These diapers def. had blood in them. The dr said to decrease even more back down to 50% and they are sending every diaper down for lab work. I hope we hear something soon. The resident pediatrician came in this morning and said they would be back later with the team of dr. When they found the blood last week, they said it was due to his milk/protein/soy allergy…however this weekend he has not had anything of the sort which concerns me because of the increase in blood. I am afraid if he can’t tolerate the ele Care then he will have to have the tpn. I will ask the dr later on when they round.
For now they are letting him take 1oz of 50% strength formula by mouth 3 times a day. He is not throwing it up which is good but he has bloody diapers right after. Instead of throwing up his calories he is loosing them out in all of his dirty diapers.
On full strength through the NJ feeding tube(which enters his nose and end in his lower intestines) he is only receiving 133 calories in a day, and so when he is on 50% strength he is only getting 61.5 calories a day. He needs around 160 calories for his age. the GI dr said he is about 2lbs behind in his weight gain but that now they just want to see him gain weight.
They are hoping to keep him in Fairfax until he is ready to come home. I did talk to the nurse and Dr today and they are going to get me a case worker.They can do all the paperwork to get the insurance to pay for the Ele Care which is $50.00 a can.They will teach me how to care for him in the event that he comes home with the feeding tube still in.They arn’t really too concerned about that right now because first they have to figure out what he is able to tolerate while getting enough calories to gain weight .
I know some people are asking what they can do and we really appreciate everything and anything people want to do to help. The hospital here doesnt serve parent trays in the room so I have to provide for all my meals. However the cafeteria here is so expensive. If you would like to help with gift certificates for resturantes or send snacks that wuld be so cool!! Mom brought me up alot of snacks yesterday so that helps!
The hospital staff here has been really great. They have these people called child life specialists. They basically are trained to entertain and distrac children from the discomfort of the hospital life. The have several playrooms in the hospital as well as a hospital school so that children who are here long term can still somewhat keep up. They have daily activities for children of all ages. Two days a week they have an infant activity class and they also bring thing to the room for babies. They have brought alex so crib noise machines for his crib. The mobile they had available was broken so I made him one! They were trying to find a swing but they were all already in patient rooms. Mom was able to find a small travel swing at target and Peanut just loves it.
I will update once we find out whats going to happen next…love you all