Some of you have been asking what all we have to do to care for Santino. Well I will do my best to explain the day in the life of Tino. I'm going to begin in the evening w/ dialysis then end w/ dialysis.
8pm - 9pm Hook Santino up for his 12 hr dialysis treatment.
1-2 am His feed ends and his Joey pump beeps at us. Flush out his nj so it doesn't get clogged.
6am - 7am Start him on his feeds again of 150 ccs/ 25ccs per hr
7:30am Give him his meds: Prilosec, Amoxicillin, and Calcitrol
8am - 9am Disconnect Tino from his dialysis treatment.
We then weigh him and take his blood pressure.
If we feel motivated we then put his eye drops in and cath him.
(The cathing is to keep his urethra open where his valves were ablated)
Noon He gets his vitamins: Nephrovite
We make his next batch of formula for the day. Which consists of:
Good Start Gentle Plus, Duocal, Benoprotein, and Oatmeal/Rice Cereal w/ a
splash of sodium chloride (7.5 ml)
Start his next feed of 150 ccs/ 25 ccs per hr
2pm He gets his Iron supplement (can't be given w/ vitamins or prilosec)
We will probably cath him again.
Hopefully he is taking a nice nap for us!
6pm Change his bandage on his PD catheter
Flush his broviac catheter w/ heparin
Tue/Fri give him his shot of Epogen
Start his last feed for the night 150 ccs/ 25 mls per hr.
7pm Set up his Dialysis machine for treatment. Takes about 20 mins to prep.
8pm- 9pm Get Tino settled in his crib for his 12 hr dialysis.
These are all approximate times of course. Life would be too good if it all went on schedule. We are getting the hang of it. The first week was pretty stressful get used to everything. My husband made a nice daily log sheet so we can keep track of what we need to do. I need one for my other kids for baths, homework, chores, lunches, uniforms, etc :)
Tino is worth it all. We have 11 more pounds to go for him to reach the weight he needs to be for a kidney transplant. This morning he weighed in at 11 lbs 10 oz. Way to go Tino!
Santino on one of his good days
Enjoying my binky!
Mommy time
This is the life in mommy's arms!
Daddy time
Checking out my daddy
Snoozing after bath time
Sponge baths are good!
Free of ventilator!!!
This is what I look like w/out edema
Daddy holding Tino!
Daddy changing Tino's diaper
Baby Tino in my arms!
Santino's eyes are open
Isn't he just the cutest!!
Big yawn!!!!!
Tino w/ hemodialysis catheter
not a pretty thing, poor baby!
In the Children's NICU
Santino after they placed the peritoneal catheter
YAY! WTG Tino for hitting 11 lbs! YAY big boy!I am praying so hard that transplant time will come quickly. Please let me know if you would like an invite to the dialysis babies group. it's really a great group of women. Most have babies on dialysis and three of us have little ones post transplant. It's an amazing wealth of knowledge. It's not a horribly busy group but it's so wonderful to have other women who know what you are going through. Jenny is also in that group.
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