Mommy time

Mommy time
This is the life in mommy's arms!

Daddy time

Daddy time
Checking out my daddy

Snoozing after bath time

Snoozing after bath time
Sponge baths are good!

Free of ventilator!!!

Free of ventilator!!!
This is what I look like w/out edema

Daddy holding Tino!

Daddy holding Tino!

Daddy changing Tino's diaper

Daddy changing Tino's diaper

Baby Tino in my arms!

Baby Tino in my arms!

Santino's eyes are open

Santino's eyes are open
Isn't he just the cutest!!

Big yawn!!!!!

Tino w/ hemodialysis catheter

Tino w/ hemodialysis catheter
not a pretty thing, poor baby!

In the Children's NICU

In the Children's NICU
Santino after they placed the peritoneal catheter

Friday, September 25, 2009

Santino's Daily Regimen

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!

Saturday, September 19, 2009

Nj seems to be helping

Tino had his nj placed yesterday. He seems to be doing better so far. He still has a gag reflex and he is spitting us some collected mucus. He seems to be keeping his formula down. We'll see if it makes a improvement in his weight gain and bowel movements.

His dialysis is going well. We did have our first power outage while on dialysis. That was fun. John had to go borrow a generator from our neighbor. Besides the hassle it went smoothly.

Tino is now 10 lbs 12 oz. He fluctuates daily by a couple ounces. He is a pretty good baby with all that he is going thru. He isn't too fussy and is easy to calm. Which I'm very thankful for.

Maybe on another day I will put our daily regiment. It keeps us busy.

Thursday, September 17, 2009

The joy of reflux!

We are somewhat getting the hang of things. Taking care of our little guy is a little more than what we anticipated. What thru us for a loop is the vomiting 15x a day. Today so far it has only been 6x. The poor guy is either dehydrated or backed up, he has only pooped once today. We go to dialysis clinic tomorrow to get checked out. He also has a appt. to get a nj to replace his ng tube. The nj goes further down to help keep his food from coming up. Hopefully it will help some. Hopefully he won't pull it out like he has his ng. The radiologist has to put the nj in.
Otherwise it is good to have him home. I even managed to go to bible study today. That is w/out the lil guy. Daddy took care of him. Dad has been doing a great job. Unfortunately he has to go back to work on Monday.
Well that is all i have time for.

Friday, September 11, 2009

Santino is home!!!

Santino is finally home. He was able to come home yesterday after much hard work from our case manager. It almost wasn't going to happen because of insurance issues. What a nightmare! The case manager was able to get everything in place so we would get all of Tino's medical supplies. We also have a nurse visiting us at home to make sure we are comfortable with everything. John and I are still trying to figure out a schedule that works best for us. The schedule he was on at the hospital was too spread out. We will get there hopefully in the next couple of days.

The first night was okay. He had a lot of spit up episodes. Which is to be expected unfortunately. He has issues the first hour of his dialysis. All the fluids in his lil tummy is just too much for him. He usually has to poop, which causes him to spit up. Last night he spit all his meds we had just given him. Other than the spit up he is doing pretty well. I think he is enjoying being home. He is giving us lots of smiles.

We definitely have our work cut out for us but it is all worth it for our lil guy. I just have to figure out how I'm going to take care of my other two also?

Wednesday, September 2, 2009

Broviac catheter for Tino

Another lil surgery for lil Tino. The renal Dr. decided to put a Broviac catheter in my lil guy before he comes home. For those of you who don't know what that is, it is a catheter that goes into his artery so blood can be drawn, meds given, etc. Instead of having to poke him with a needle whenever he needs labs drawn. It is a permanent thing for as long as he needs it. I wasn't too crazy about the idea of having another tube hanging from his body but I guess it is better for him.
He did well with the surgery. I was able to hang out with him in recovery because he was a bit cranky. I would be too. Poor guy was hungry since he was NPO since 10 am. He didn't get back to his room until 8:30pm.
When we got back to his room his meds were waiting for him. So I gave those to him on a empty stomach. The nurse started his feed right after that and he threw up all his meds.
Not that, that was enough I got to set up his dialysis and hook him up for his treatment. My poor baby I wanted to stay and comfort him. But my other kiddos were waiting for me at a friends house. My 6 yr old was sad and started crying for me.
Things will be much better when Tino comes home.
Hopefully next week if his shipment of supplies gets to our house in time. Pray for us that it does. I don't want to wait any longer. He needs to be home with us.