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

Thursday, June 3, 2010

Surgery #9 for Tino

I have been wanting to post lately but I don't seem to get to the computer to do it. I sit and think and reflect but just don't have the energy sometimes to type it out. I'm having one of those "moments" so here I am. What has brought me here is that Tino had a little surgery today to remove his hemo catheter and get a port put in. The surgery was quick and he seems to be doing well. It was outpatient so we are home and he is sleeping very comfortably in his crib (the only place he seems to want to sleep).

So today brought a lot of memories flashing back to John and I as we were walking him over to Radiology to have the procedure done. We checked him in at Children's Hospital then walked him over to Sharp Memorial for the surgery. To get to Sharp we walk the "tunnel"....this is the same "tunnel" we would take to visit Tino after he was born. I was recovering from my c-section at Sharp Mary Birch and he was at Children's having surgeries to save his life. John would wheel me over in a wheel chair and I remember how long the "tunnel" seemed. I wasn't that far from my baby boy but it seemed like miles away.
So here we were today walking that "tunnel" again but in brighter moods. Our little boy has made such great progress in his almost 1 year of life. I remember us being so fearful of what would come of our precious miracle boy. I had fear today or anxiety as any mom would of their child having surgery but not like the fear I had in June of 2009. We have come a long way. It has been an exhausting, exhilarating, tearful, joyful, fearful, rejoicing, and BLESSED year! I know we wouldn't have been able to do it without our Saviors strength, forgiveness, mercy and grace. I have had plenty of breaking points but He has always picked me back up. We have also been blessed with wonderful family, friends, and neighbors who are always willing to give us a helping hand. So what a awesome year!!!
My baby boy is going to be a year in 16 days!!!!
Praise God !!!!

Thursday, April 8, 2010

Long Night Post OP

Yesterday was a long surgery day for Tino. He ended up being in surgery for 6 hours. No wonder he was so miserable last night. All the surgeries went well. He was able to be extubated pretty quickly after sedatives started wearing off. I was suprised they took him off of the vent so quickly. I hate seeing him with that huge tube down his throat but he would have been kept sedated and he would have rested more. But instead we had a restless night. He was able to get tylenol and morphine. The first small amount of morphine wasn't doing the trick so he was able to get a little more later on. The docs don't want to give babies too much because they tend to relax too much and stop breathing, scary. Which Tino has done twice while he was in the NICU.
He was able to get a little over an hour of sleep with each dose, given every 2 hrs as needed.

He did a lot of whining and moaning. I could tell he was very uncomfortable and hungry. I was able to swab his mouth with a wet spongecicle (lil sponge on a stick). He loved that! Wasn't enough for him though.
He finally slept the most when he was doing hemodialysis. Which I'm glad he slept through that.
He had his first hemo this morning and was able to UF 354. I was happy it worked out, since he is not able to do peritoneal while healing. He needed the dialysis to because his potassium was increasing, it was at 6.
Besides being uncomfortable and hungry he has been doing really well. He is still on a nasal canula for oxygen and all his vitals have been stable. After I left today he was transferred over to the IMU from PICU. That is always a good sign.
John is staying with him tonight so I can get a good night sleep and was able to spend time with the big kids. I did call to check on Tino tonight and they were busy putting in a new I.V. He likes to pull things out. Got to watch that boy!
I am exhausted and need to get some shut eye. Hopefully more good news tomorrow!

Wednesday, April 7, 2010

4 surgeries in one day!

Well here I am again. I haven't posted much because Tino has been doing so well. He has been acting like a normal baby: drooling, waking up in middle of the night, babbling, and just giving us great joy and sleepless nights. All has been too smooth so we had to throw it out of whack!

We are at the hospital right now waiting for our precious Tino to come out of surgery. He was admitted around 8 am for 4 surgeries. Tino is having a g-tube placement, fundo, hemo cath placement, and a bilateral hernia repair. He is going to have a few tender spots on his lil body :(
We, along with the doctors decided to have the g-tube placement done. Hopefully with the g-tube he will start to gain weight a lot more quickly. If he gains weight that will bring us closer to transplant weight of 22 lbs. The fundo is a surgery that wraps his stomach around the esophagus to prevent reflux. So no more projectile vomit or burping. The hernias he has had since birth and his urologist was waiting for another surgery to come up before tackling those. And last but not least the hemo cath placement, that is in case they are not able to do peritoneal dialysis on him. He usually becomes fluid overloaded quickly so he will be needing some type of dialysis while he heals. This is a lot for my little guy but it is all to prepare him for transplant and life after transplant.
Tino's nephrologist did mention on Monday that she would like to begin the process for transplant. She is going to get the paperwork in order so John and I can start being tested to see if we can be potential donors. I was very excited to hear the word transplant come out of Dr. Benador's mouth! I didn't ask too many questions because I wanted to get through this surgery first. After this I will be asking lots of questions!
Well back to the waiting room for me. Hopefully we will be able to see our baby boy by 1-1:30pm. It will be nice to see his cute face without the nj feeding tube taped on. I think he will be happy too!
Thank You for your prayers!
Yvette & Family

Monday, February 22, 2010

A new accessory for Tino

It has been too long since I last posted. I haven't been in much of a writing mood. I usually type how I think and that is usually random thoughts. I drive my husband crazy!! He is the writer of the family and my 8 yr old daughter. Anyhow, I will try and stay focused.
Tino has had a good new year. We have stayed out of the hospital since are last scare in Nov.. He has been pretty healthy for the most part, just the occasional sniffles. Brother and Sister contribute their germs oh so generously.
We haven't had to make any drastic changes to any of his medications. The only one is his calcitriol med. His labs were in the low 1,ooo's and it should be in the 300's for his calcium. We are working on that one.
His weight has been increasing slowly. He is hovering around 15.8 lbs. We have about 7 more to go for transplant!!
His dialysis has been working well for him. His blood pressure has been decent, not the greatest. Usually the low 100's/ 60's.
So overall he is doing pretty good. He is being a normal jolly baby for the most part.
We are still taking him to physical and occupational therapy. He has learned how to roll over now. This should get interesting with his nj tube. He has gotten himself all tangled up.
Still working on his upper body strength. He isn't sitting on his own yet but we will get there.
He is making great progress for all he has been through. Amen!
Tomorrow we take him in to get his Doc Band (helmet). This is a helmet he will have to wear 23 hrs out of the day. It is to help reshape his head. His lil noggin grew a little crooked while he was growing in my tummy. Since I didn't have any amniotic fluid for the last 14 wks he didn't have any space to move. So his head being stuck under my ribs they took that shape I guess you could say. I will hopefully get some pictures up soon. That is all that I have in me for now.
Got to go get ready for our busy day tomorrow!