Mattea's home...Viagra ROCKS!!!

As soon as Mattea got her first dose of Viagra in the hospital, they were able to take her O2 down from 3 liters to 1 liter!!!!!!! She got to come home yesterday afternoon. Sorry no hospital pics, I kept spacing on bringing my camera. She had all the nurses wrapped around her little finger.
Now we are fighting with our insurance company to pay for the Viagra, of course. Walgreens wants almost $700 for it. The docs are busy trying to get prior authorization so the insurance would pay for it. It didn't get straightened out in time for her discharge, so we had to get several days worth from the hospital pharmacy to tide us over while we argue with United Health Care...grrrr.

I am thankful

Happy Mother's Day to all the moms and moms to be, and the ones preparing to travel overseas to bring home their new little ones in the next few weeks and months. This is my 30th year as a mom, and I am thankful for many things.
I am thankful for the 14 children I was blessed to parent and all of the experiences that went along with bringing them into my home and watching them grow.
I am thankful for my husband by my side through the journey---his hair is already all gone, so he gets to watch me tear mine out, haha...
I am thankful for my own mother, who I am lucky enough to still have around as she just celebrated her 90th birthday this year.
And more specifically to this week, I am very, very thankful that we were able to bring Mattea home to our family before she got this stupid flu. She's doing well this morning, ON Viagra, hopefully coming home in a day or two. Thank-you everyone for your prayers.

Test results...

The official test results are in--- Mattea's test came back positive for Influenza B. So much for her flu shot. She's feeling better, acting more like herself this afternoon. We got her meals straightened out and she had a good dinner and ate almost all of it.
And they are starting the Viagra tomorrow!

Hanging in...

Mattea is on respiratory isolation until her tests come back. They did not have her on IV fluids all night and my husband says she only had one wet diaper in 12 hours, so they will hopefully start one today. The on-call cardiologist came to see her and may start her on the Viagra. Poo poo on you, Dr. L. I am going to get dressed and head into Albuquerque to see for myself what is going on. I wish they could have put her on our unit.

Mattea's in the hospital :o(

More details in the morning... the flu bug got her. Please pray!

And the new cardiologist is...

We spoke to the cardiology nurse at Denver Children's today and Mattea's new cardiologist is officially Dr. Dunbar Ivy in Denver! We will make that drive as often as we have to if it means that she has an awesome doc. We have heard he is one of the best, especially with pulmonary hypertension. We have an appointment on May 29 already!

Happy Birthday, Mattea!

Poor Mattea has a touch of the flu like everyone else in our house but yesterday was her 7th birthday, and her very first birthday party! She didn't eat much dinner but she did enjoy her special cake. Angel food cake with Cool Whip and fresh berries, yum.

We just fired the cardiologist...

Today was the last straw. We were so excited that the pulmonary hypertension specialist at Denver Children's Hospital was going to help us with Mattea. He was supposed to call her local cardiologist, the infamous Dr. L and give him the details about prescriptions he wanted her to start taking as soon as possible. Well...of course we have heard nothing all week from Dr. L so I called his nurse this morning. She told me she knew nothing about what I was talking about and would call me back this afternoon. She actually did call back. Seems Dr. L refuses to go with the program and is saying if we want Mattea to be taking the Viagra we will have to take her to Denver to get it. So...we are hoping to hear back from Dr. Ivy on Monday. Denver here we come!

Kiddie Kandids

Mattea got her first haircut today, so we had to go do pictures!

FINALLY...

We FINALLY heard back from Denver Children's today, Dr. Ivy is supposed to be the top, or one of the top, pulmonary hypertension docs in the US. We got to speak with his nurse who took the time to explain what they have planned for Mattea(!) and to answer all of my questions. After they looked at all of her results of her cath and echos they are going to have our cardiologist start her on Viagra (approved for use in pulmonary hypertension to vasodilate), and will possibly add in a second med (Bosentan) later. They are going to start her on a medium dose and take it up to a high dose to try to lower her pulmonary hypertension. After a period of time, at least several weeks to a few months, we will take her up to Denver and they will do another heart cath to see what effect the med has. During that cath they will test to see how her body will respond if they close any or all of the holes in her heart.
She went on to explain that in some cases when surgery is not the best option, the patient can be medically managed and live into their FIFTIES! (Our cardiologist had told us she would only live another 5 or 10 years) I asked about whether or not they could do a partial repair to see how she would tolerate it. She said that was one thing they would check for in the cath. She said that sometimes they do leave small holes because the patient tolerates it better that way. I asked about heart-lung transplants. She said a lung transplant is the only "cure" for pulmonary hypertension but it only has a 50% chance of a 5 year survival rate so it is reserved for a very last resort, as the patient couild live much longer being medically managed.
So...our goal now is to reduce her pulmonary hypertension as much as possible and hope there has not been too much permanent damage done to her lungs. But even without the surgery, things are sounding a lot better. Now I need to work on the ENT doc to get those tonsils out, which will also lower her PH.
Thanks everyone for your support and prayers! Looks like sooner or later, one way or another, we are going to Denver!

Prayer warriors unite...

Brenda commented on the previous post:
"I am praying for Mattea. I hope the Dr will take her tonsils and adnoids which is a start and then I hope you can find a Dr to help her with her heart. Is there anything people can do to help get her on a transplant list? "
Thanks for asking, Brenda. For the moment we are just asking all you prayer warriors out there to unite with us in prayer as we wage war against preconceived attitudes and try to find docs who will listen and care and see that our strong little princess needs their help. I have made initial contact with docs at Denver Children's hospital and feel a little hope building, as they have actually received Mattea's records, and the pulmonary hypertension doc has been out of the country until yesterday, doing missionary work in Nicaragua. Sounds like he may be on our "team." I will most certainly keep everyone updated, and if there is anything you all can do, I will humbly put it out there. Thank you all so much for your continued prayer and support. The docs here in Albuquerque must not realize who they are dealing with ;o)

It's reaallly bothering me.........

Mattea's health has been on my mind. She has little things like her tonsils and her ears that need fixed, and for her they are fixable. SO WHY AREN'T THEY FIXING THEM??? And her heart...the docs are all refusing to repair it because of her pulmonary hypertenson. If she was six years old with an unrepaired AV canal, and severe pulmonary hypertension AND SHE DID NOT have Down Syndrome, she'd be on a heart-lung transplant list somewhere. IS SHE LESS WORTHY than any other child??? To us she is priceless. WHY WON'T THEY HELP HER???

Happy 3rd Birthday to my Bubs!!

Three years ago, on April 27, 2006, this photograph was emailed to me, with some birth information, and the request to decide if we would accept the referral of a little boy born 5 days earlier, 7 pounds and 10 ounces and 52 cm long... Here he is a few days ago, on his 3rd birthday!

The taste test

I'd say it passed...



The first lighting of the candles

Oops, Bubs, you are supposed to let Mama take a picture of you while you blow them out...

Second lighting...deep breath...

Oh well, I tried...he's just too fast for me...he practiced on all the other kids' cakes...

Yay, Spiderman!!!

Estuardo had a great birthday! He is really growing fast. He was so excited to see all of his presents and had a hard time waiting to open them up, but he actually made it through dinner and cake first. He has grown so much this past year and learned so many new things. He is talking up a storm now and carries on the cutest conversations. Right now he is all about Spiderman and Ninja Turtles. And as you can see in the pics, he's still into wearing his pajamas al day long too. Happy birthday, Bubs! Mama loves you so much!

Okay, this lttle guy needs a family NOW!

This is "R." He has already been transferred to an Eastern European mental institution to live out his days. He is in desperate need of a family to call his own. You can find out more about him at www.reecesrainbow.org. Please open your hearts. And please pray for this little guy!

Marcus Timur and Macey are home too!!!

These precious angels were also in the orphanage with Mattea. In fact, Macey was in Mattea's groupa! They just got home yesterday to live in America with their new family! This is so awesome! All in one week! And little Slava will be on his way home next month. Wow. I wonder if the orphanage is getting the "message"?

Alina's HOME!!!

This is Alina. She was in the same orphanage as Mattea. Alina came home

to her new family on Saturday!!!

"Only a Stonecutter"

Watermelon!

Bubs loves his watermelon!
Mattea had her first ever piece of watermelon last night...

The curly headed child loves it too!

And I would have to say that Mattea gives watermelon a big thumbs up! She also chowed down on the barbecue ribs, rice and peas and I didn't put any of it in the food processor. She's starting to develop some all-American tastes for "real food"!