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 !!!!

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!

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

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!

We have been busssssy....

This has been one busy month. My days are usually busy but this seems exceptionally so. I guess trying to get ready for our Christmas celebration has a little to do with it as well. We are very excited that we have our very special baby, to celebrate his first Christmas, with us. I finally took a picture of all 3 kids for our Christmas card last night. Wooooooh! What a task! It should be enjoyable and cute but when I have a clown for a son it makes things difficult. I will share some of the retakes :)

I still haven't bought anything for Santino for Christmas. I'm at a loss. Anthony wants to buy him a stuff animal zebra and a book. There is one idea. I should have something for Tino to unwrap but our house is so cluttered with Baxter boxes (dialysis supplies) and baby gear I just can't justify more STUFF! I think I'm going to submit a story to Redbook to get them to send that gal to unclutter my house. Serious!

Anyhow, back to the craziness. Last week was full of doctor appts. for lil man.

Monday he had his P.E.T. test (Peritoneal Equilibrium Test) which required us to be there from 9:30 am - 3:30 pm. We love you Tonia (dialysis nurse) but don't really like spending that much time at the hospital with GERMS!

The PET test required that Tino start dialysis the day before at 1:30 pm. He did really well, better than expected even. He slept thru a good bit of it and when he was awake he sat in his swing and watched Winnie the Pooh. Luckily I had a cassette with longer tubing! So he did his usual 12 hour cycle with a last fill of 210 cc (uncomfortable).

For the test he had to be drained when we got there, weighed and filled again. I believe Tonia took a sample of the fluid as well. Then we had 2 hrs to kill time and go back again for the same, drain and fill. 2 more hours then same. Also some blood for labs. That was the exciting PET test. The results are that his peritonium is working well meaning dialysis is working well for him. It doesn't always work that great for lil ones and they end up having to go on Hemodialysis. I'm glad it is going well for him, the longer on peritoneal dialysis the better. So this was our Monday. Oh, plus there was a storm so it was pouring rain and windy all day. I know California storms are nothing but we are just not use to the rain. The worse rain I have driven in was in Pennsylvania thru the Pocono Mnts. Buckets of rain!!

So Tuesday was a little better. We began our day with Physical Therapy. Tino was in a good mood so that helped. The therapist said he is a little delayed which is to be expected. He still isn't sitting up that well and doesn't have the greatest neck strength. He hasn't been rolling over much. He still has torticollus which causes his neck to be tight. He has a hard time looking to his left. So what I need to work on with him is more sitting up, tummy time, pulling him up by his hands when he is lying, and holding him on my right shoulder so he looks out to his left. Anything that helps strengthen his neck muscles. So we have our little work out are with his exercise mat, Bumbo chair and toys.

His head is a little miss shapen from the torticollus. His head protrudes a little in the back to the left. His head measurement was 4 cm off with our evaluation now it is 10 cm with the last visit. If I remember correctly she said his measurement is only moderate for severe it has to be 14cm. If it reaches 14cm our insurance should authorize a helmet for him to help reshape his skull. I'm hoping we don't get to that point. That would mean more appts for him and a uncomfortable helmet along with everything else :( So Tino and I are going to be doing lots of PT!

After that appt we had to make a quick visit to Tonia for his Epogen shot. I usually do it at home but when I called to order a refill they told me our copay was $530.00 !!!!!!! OUCH!!!! I thought maybe there was a mistake but NO! It is for a 3 month supply but $530.00 right before Christmas. When we just put $1000.00 into my car for new shocks and tires!!! We have been doing some investigating to see if there was a mistake but no such luck. We are covered for the rest of this month for his shots but next month it will be time to cough up the money. I hope St. Nicholas visits and leaves us a pouch of gold. :)

Wednesday Tino had his regular dialysis clinic when the doc goes over his labs and decides what meds he needs or doesn't. She also checks his PD catheter site, looks at him for dehydration or fluid overload. Checks his vitals and takes his temperature. Which he had a slight fever and had a major diarrhea blow-out. Great, right! The doctor (Dr. Benador) and nurse (Tonia) thought his breathing seemed a little labored as well so they wanted a chest x-ray to make sure his lungs were fine. So when we were done with clinic we took him to radiology for the x-ray. While waiting a little girl puked all over. Yuck, GERMS! The x-ray looked great, his lungs were clear as could be!

I also meet with his dietitian. She weighs him and measures his length and compares his growth to the month prior. His growth pattern has not increased much compared to last month.. Hopefully he starts growing or he will need growth hormones. She did increase his caloric intake. We were all excited that he has been drinking at least 50 ccs a day from a bottle. Less time hooked to the Joey (feeding pump)!

Wait for his new meds at hospital pharmacy because so far only pharmacy that can do compound meds. Ate a late lunch while waiting. John was with me for this appt which I was very thankful.

What a day, huh! What should only take a couple of hours we were there from 11-4.

Tino's fever didn't go away so I ended up taking him to his pediatrician Thursday morning. Of course he didn't have a fever when she saw him. She figured he just had a stomach bug and it would go away. She was right, 24 hr stomach virus.

He is all good now ( knock on wood!).

Tomorrow we go back for some more PT and hopefully one more appt with dialysis clinic and done for the month. Maybe an appt with Pulmonology to check out his lung/oxygen status ?

I hope everyone has a Wonderful Christmas! We are counting our blessings :) May you be blessed as well!

Love,

The Pepe Family

Thankful to be home!

Santino and I are finally home! Santino's stay in the hospital lasted 8 days. It seemed very long but I'm thankful it wasn't any longer. My lil guy recovered very well. He was intubated for a total of 3 days. Once he started waking up from sedation he wanted that tube out of his throat! He was extubated Thursday morning and after that he was a new baby. He was smiling and much happier than he had been in a while.
There wasn't any official diagnosis on what was going on with him. We think that he didn't fully recover from his bronchiolitis and he had fluid overload from dialysis not working so well. The discharge report just said respiratory failure (scary!). Whatever it may have been I'm glad he is better and home.
I finally got to see my big kids today. I hadn't seen them since Friday and was missing them very much! They had fun hanging out with Poppy.
Tomorrow is Thanksgiving and we are plenty thankful. Thankful for our precious Santino, beautiful Ysabella, and comedian Anthony. Thankful for our store prepared Turkey Day meal. Thankful for the wonderful doctors and nurses that helped Tino make a full recovery. Thankful for the El Cajon Fire Dept. Paramedics who acted quickly in taking my lil guy to nearest hospital. Thankful for our wonderful church family who is always a phone call away when we need them. The list can go on and on. Right now I'm thankful for my 3 kiddos sleeping and my warm bed waiting for me. Hope everyone has a wonderful Thanksgiving!
God Bless!
Yvette

Still in PICU

Nothing new as of today. Santino is still intubated and on a painkiller/paralytic. It is so hard seeing my soon to be 5 month old not moving around and not smiling. He was starting to become a little more active now and it is so fun to watch him grow. Now we are at a stand still. I am thankful he is being well taken care of and looks better.
The doctors are still not sure what type of infection he is fighting. They have given him Tameflu ? incase it is H1N1. No more blood transfusions because his hemoglobin is much better. The respiratory nurses are suctioning out his lungs to get all the gunk out. His right lung looks good but his left side is still a little junky. They haven't needed to give him a breathing treatment since Monday evening. Whatever it is he seems to be fighting it. His fever has gone away as well. I know I am rambling, I'm just a little sleep deprived.
I will be going home tonight and John will stay with the lil guy. I miss my big kids and need to give them some hugs. Unfortunately I'm picking them up from school and taking them to the pediatrician to get the H1N1 shot. They won't be too excited to see me!
Thank you all for your prayers and concerns. We are hanging in there. Our spirits are still good. John and I say the nurses must think we are nuts because how much we are still able to laugh at things. Laughter is good or we would go nuts!

In His Grace,
Yvette