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

Santino's 1st & 2nd Ambulance Ride (hopefully last!!!).

We are back at Rady Children's Hospital as of yesterday. It all really began Sunday morning. We woke up a little early to get ready to go to the Miracle Babies 5k walk. But Santino had other plans in the works. He had only UF'd 95 on his dialysis which it is usally from 170 to 250. He looked puffy from fluid overload. We called the on call nephrologist and she suggested putting him back on dialysis for a few cycles to pull off more fluid. We decided to have John stay home with him to start the dialysis and I took the kids to the 5k.
We had a good time at the walk and they got out a lot of energy.
When I got back home I gave Santino a breathing treatment and he seemed a little better. He had seemed a little pale to me and lethargic. I took his temp and it was 100.1. He cooled down pretty quickly after that and didn't really spike a temp again. We decided to see how he did over night. John went to work as usual and I watched Tino over night.
He slept pretty good until around 2 am. He was irritable and seemed uncomfortable. I thought maybe he was constipated. He seemed like he was trying to push something out. He was bearing down but he suddenly just froze and seemed like he wasn't breathing. I hurried and turned on the light and picked him up. As soon as I picked him up he started crying and seemed fine. I was getting a little worried at this point. I sat with him at his crib until 5:30 am and he finally fell asleep. I rested a little until it was time to get the big kids up for school.
At 8 am sharp I called the pediatrician to get him in. They had an appt available for 10:50 am. I called John at work so he could come home and go with me. I knew something was up. I didn't want to take him to the ER because of the wait and all the GERMS.
So anyhow we get to the pediatrician and she said his coloring did look off and his breathing was rapid. She decided to get his oxygen sats and it was 47!!!! It should be 100%! At that point she said she was very concerned and was calling and ambulance. They got there within 10-15 mins. I was crying at this point because I felt horrible that I didn't take him in sooner.
While we were waiting the pediatrician got him started on some oxygen with some Xopenex.
The fire dept arrived and Santino and I got loaded up to head to Children's. They had him hooked up to oxygen and monitors. On our way his heart rate decreased as well as his sats. So we detoured to the nearest hospital. Which Children's was only 5 mins away. I was panicked at this point but a calm panic. I called his dialysis nurse to let her know and I lucky remembered to call John to have him go to the right hospital.
We got to Alvarado hospital and they gave him oxygen, drew labs and began antibiotics. His color started looking a lot better. Alvarado is not experienced with infants so the CHET team was called from Children's . They arrived about 30 mins later. John and I were so excited when we heard CHET was on there way.
When CHET arrived with the NP they decided to intubate him there rather than have him stop breathing on the way to Children's. I was hoping to never have to see him intubated again. It was so hard seeing my little baby sedated and with that big tube attached to his lil face.
So we loaded up again in an ambulance and were brought to the PICU here at Children's. We have a new set of nurses to become familiar with. Tino is making his rounds.
So far the tests they have ran: MERSA, RSV, INFLUENZA A & B , have come back negative. The H1N1 test goes to the county so that hasn't come back yet. So they are still not sure what it is he is fighting. Hopefully nothing too serious.
He is still intubated and fully sedated. All his vitals have been good. We are just waiting to find out what we are fighting here. I will keep you updated with anything new.
We appreciate all your prayers and concerns.
In His Grace,
The Pepe Family

How are we doing?

I have updated on lil Tino but I have been asked by a few "How are we doing?". We are all doing pretty good. The kids are adjusting pretty well to have a new crying/gagging baby at home. They were maybe a little nervous and unsure at first but they definitely love their baby brother. Big Sis always wants to hold Tino and loves trying to make him laugh. She is a big help watching him and entertaining him when I have to step away from him for a bit. She still gets a little nervous when he starts to wretch. She is doing very well as a big sister to two brothers.
Anthony is starting to come around a bit more. He wasn't so sure on how close he wanted to be to lil Tino. He enjoys holding him as well. The other night they hung out in bed and watched a little "Cake Boss" together. It was very sweet. Anthony also makes a run for it when Tino starts to gag. Anthony is afraid he may get puked on, which is a probability. The big 6 yr old is doing well as a middle child. He hasn't been deprived of attention anymore than usual.
We are trying to spend a little more one to one time with them. They seem to be competing for attention between each other. We have the bickering, tattling, poking each other, and such. They also have a great time playing with each other. They would be lost without one another.
They are both doing really well in school. Ysa is in 3rd grade and Anthony is in 1st. Ysabella is excelling in all her subjects except for math (still doing pretty good). Anthony is doing well in all subjects as well. We are working on getting his reading up to speed though. We started reading from his Easy to Read Bible every night. It is working out well. I'm usually way too exhausted to read him a story so it is perfect!
So that is how the big kiddos are doing.
John and I are both doing pretty good as well. We are usually wiped out by the end of the week. We have got a routine down for Tino's medical cares. His dialysis is pretty simple to get going in the evening. The only thing that is wish we didn't have is the feeding attached to him all day. It makes it a hassle to try and go anywhere. I can't just grab him and go. I guess you really can't with any baby but it does take a little more time.
The last few weeks have seemed to be consumed with doctors appts. They should hopefully slow down a little. We have a big 6 hour appt coming up next week. Tino will have to go in for a test to make sure his peritoneum is working well with the dialysis. So it will be an all day thing. This will be our first so I will let you know how it goes.
Other than that we are hanging in there. We are tired by days end but we are filled with joy everyday to have our lil tough guy with us.
This coming weekend on the 15th we will be doing a walk for Miracle Babies. We are excited to be a part of this fundraiser to help support NICU parents like we were for 3 months. I will hopefully take some pictures and share some more with you. We will be showing off our miracle baby!
Until next time!

Santino at 4 months

A lot has happened and not really happened since I last posted.
My lil guy is now 4 months. He is doing wonderfully. His dialysis is working very well. We haven't had any problems with Fibrin or any signs of infection. His labs have been going up and down on different things. His blood pressure was remaining high, his phosphate a little high, low iron, low hemoglobin, so his meds were increased or a new one has been added on. He has a total of 7 daily meds and 1 (2x weekly). He also has a nebulizer now w/ Xopenex. I give him this whenever his breathing seems really labored. Usually at night before bedtime. Other than that he is doing really well.
He has reached 13 lbs 9 oz. Yay, Tino! We have 9 lbs to go for transplant.
He still has the nj tube which is working out well for him. The only thing is now that he is getting a little older and stubborn, he keeps trying to pull on it. I have a feeling he will be pulling it out sooner than later. The doctors have asked if we want to put a G tube in but we are still a little hesitant. We don't want to compromise his peritoneal dialysis. We really don't want him to be on hemodialysis again. It was really rough on him. Granted he was a teeny baby but he still is my lil baby. We'll see what happens with that.
Tino also has a hernia and the Urologist is reluctant to correct that for the same reason of compromising his dialysis. We are to just watch it for now and make sure it doesn't become irritated and red.
We are hopefully going to start seeing Physical and Occupational Therapy. We are waiting for authorization right now. We will go to PT for his Torticollis of his neck. We are doing stretchs to try and loosen it up on his right side.
For OT this is more for sensory and his fine motor skills. We are working on sensory of his mouth and his grabbing for objects. He still hasn't wanted to hold a rattle. He does like his hands in his mouth and his lil satin blankey he has. We are working on it.
This is all for his health updates. Other than that he is a happy baby who brings smiles to our faces everyday.