Maddox took in 1156 calories with the feeding tube (he's supposed to take in 1320) and ate 390 calories for a total of 1546 calories. They would like him at 1620 calories in 24 hours, so he was short 86 calories.
Whenever the feeding tube is shut off for a length of time, I need to calculate how many calories he did not get. When the tube is on, he gets 55 ml and hour which is equivalent to 55 calories an hour. Tonight the tube was off for 2.5 hours (137 calories lost) because I was giving him an hour off, and then when I reattached him I forgot to turn the pump on. It was also off for a half hour this a.m. (27 calories lost). I add up those numbers and subtract from the total he should be getting with the tube (1320) to see what he actually received. I am sure at some point the adding and subtracting will seem like nothing, but right now my head is swimming.
Maddox had some little blisters under the tape (Tegaderm) holding the tube in place on his cheek. I had to remove a small corner of the tape and he just cried because it hurt. The tape on his nose cut into the corner of his little nose and he is getting a rash under the tape on the top of his nose. He also has a blister at the corner of his nose (where the tube comes out). He can't stand when I have to mess with the bandages, and tomorrow I have to change them. I may just give his nose a break and set him up with Sat morning cartoons for an hour.
It's so hard to see him uncomfortable. It breaks my heart.
The lime green couch in our room
The computer station in our room. I think Craig was able to spend more time on his Fantasy Football than he ever gets to at home.
All hooked up.
Trying to wake up Mason when we arrived at my parents house late in the night.
Maddox helped cut the tape to tape his tube, and he also placed a bunch of tape on his back. Today he helped flush out his tube with a syringe of water. And at one point was lying on the couch (u hooked from the pump), twirling the end if his tube around like it was no big deal he had a tube coming out of his nose. ( I know it is a big deal).
Playing with his first Lego set. A space shuttle.Courtesy of Nana. He and Mason have received more so many toys it's like it's Christmas.
His backpack. See how he tilts his head. He keeps it like that all the time. In this picture he is talking with our home care nurse. She was surprised at how well he is doing developmentally considering his failure to thrive diagnosis.
Auntie!! My family has been amazing again. My sister came over last night and helped out. Since she wasn't so sleep deprived, she was able to help us figure out how to make his formula up for 1/2 a day. The 2 cans of formula we received didn't have the recipe for 30 calories per ounce, only 20 calories per ounce. When I talked with the dietician, she gave a recipe for 20 calories per ounce, so we were left calculating how many ounces and ml we needed to make for 3 feedings, at 9:30 at night. Then we realized we used almost a whole can of powder. And we only had 2 and it isn't something you can just buy in the store. So I called the medical supply company today and they same day shipped the formula. The medical supply company is amazing. They are extremely helpful. Junal wants to learn how to do his feedings so she can give a night of 8 hours of sleep. thank you Junal!
My Mom and Dad have also been amazing. And I am so grateful that my Mom is a Hospice nurse. She understands feeding tubes, bandages and taping and came up with a whole list of helpful suggestions and questions I should ask. My brothers are amazing too! They keep in touch even though Derek lives out in California and Dominic is working like a mad man and getting ready for his wedding on the 16th. I love my family and am so blessed by them.
Craig is also amazing. At the hospital, he was pretty much my gopher. Running to the whole foods store to buy food for me to eat, finding yummy treats for me. He also understands the mechanics of the pump better than I do and he does have mad math skills, so that is a huge help with all the calculations. He is so supportive and I am grateful I have a husband I can count on to help wi all this crazy stuff. Last night he went out at 10:30 to buy some diet coke so Junal could have some and so I had some for today. God has blessed me with so many amazing people in my life. And so many people are praying and that is humbling and reassuring. I know that is why Maddox is adjusting so well, and also why my stomach hasn't turned on me. (for those of you that know my tummy issues, you know how big of a miracle that is). And dealing with all of the equipment hasn't been too bad, because Alicia lived with us last summer and she had a litmus medical needs. Mason even remarked how dealing with Maddox's tubing is very similar to dealing with Grammy's oxygen tubing. Plus I also had experience working with medical supply company and home care nurses with Alicia.
Going to bed in his toddler bed for the first time. He is so pumped to be sleeping in a bed. Right now his room has his rocking chair, an air mattress for me, his toddler bed and his crib. We are hoping to get the crib out Sunday. I don't know how long I'll be sleeping in his room. I am too nervous to sleep in our room right now. It is like having a newborn.
The creepy bunny. I almost get sick to my stomach whenever I see it. And lucky me, it's new home is in our bedroom.
My notes to help with all the math. I am sure my kitchen cupboard doors will be filled with notes like these soon.
I should get back to bed now. I think his formula is warmed enough. Here's hoping for a solid four hours of sleep!
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