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

Monday, December 14, 2009

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