The transplant question

Several people have asked about Mattea getting a heart transplant, including me!
The reason is that Mattea's lungs are also damaged. That's also the reason she can't have her heart repaired. The solution sounded simple to me, why not a heart-lung transplant? The cardiac nurse at Denver Children's Hospital explained to me that the only 100% cure for pulmonary hypertension is a lung transplant. However, lung transplants have a very, very poor mortality rate with something like only 5 or 10% surviving more than 5 years. The heart transplant part would be easy with a high success rate, but the lung transplant part would unfortunately probably shorten her life, not to mention what it would do to the quality. We were also told that there are people in their 50's with pulmonary hypertension, who have been medically managed only. So if that's the case, then it may not be the death sentence we thought it was.
Mattea is a happy camper this morning scouting around looking for trouble, without her oxygen tubing trailing her. Viva, Viagra!

Quick summary---

Denver Children's Hospital is a wonderful place!! I am so glad we chose to come. Dr. Ivy and his team of nurses and nurse practitioners were fantastic. They spent as much time as we needed them to and Dr. Ivy even pulled up a chair and sat to answer questions.
So here's the end result--- Mattea had an echo and an EKG and some labs done. Plus they reviewed her cardiac cath results from Albuquerque. She has Eisenmenger's Syndrome. The blood pressure in her lungs should be way lower than her regular blood pressure and hers is the same. Unfortunately this means she is definitely not a candidate for surgery, nor will she likely ever be able to have her heart repaired. In fact, he said the surgery would most likely shorten her life rather than lengthen it. But they are major pulmonary hypertension specialists and were very encouraging about medical management. And seeing her response to the low dose of Viagra that she has been on has been very encouraging to us. So yesterday they discontinued her Captopril and raised her dose of Viagra to a more normal dose. When they checked her O2 sats on her 2 liters of oxygen they were 90! So he said we could wean her off the O2 during the day as long as her sats stay above 85. I am curious to see if the higher dose of Viagra has any more effect. They want to follow her and see her every six months, with in-between check-ups in Albuquerque, with a new cardiologist. (The ones who followed her 2 weeks ago) Mattea has a sleep study in the next few weeks, and after we have those results we are supposed to get back with them as they will arrange for her to have her tonsils out here in Denver if they won't do it in Albuquerque. Of course, Daddy says the tonsils come out in Denver!

IEP today, and now we are in Denver!

Mattea's IEP meeting was today, finally! They are going to start her out in summer school, 3 days a week for 4 hours a day. So far, so good. She will have a full-time aide and for the summer, the PT, OT and speech will be consultative, meaning they will train the teacher to work with her. But in the fall she will have regular PT, OT and speech therapies. (They are not staffed for this over the summer) Everyone at the school seems to really enjoy her so I am thinking positive. They were amazed at her progress since they first met her in February.
After the meeting we ran to Walgreen's Option Care to load up the van with oxygen tanks and then we left for Denver. It took us about 8 hours total to get here including a one-hour stop at Denny's for dinner. Tomorrow morning we head to Denver Children's Hospital for Mattea's appointment with Dr. Dunbar Ivy!

Oh, Onny!!!

This is what happens when you turn your back for 2 seconds in this house...

Onny got into the little bottles of food coloring in the kitchen yesterday. This is her after I already had removed the blue-soaked clothes she had on. You should have seen the couch.

Lots of appointments and travel...

This Friday is Kory's meeting at school to discuss the results of his testing for the gifted program. I am curious, but no matter what the testing showed, I know for myself that he is very intelligent...also very 13 and very mouthy... He's been accepted into a private school for next year rather than our local public school system. I did not like the sound of the gifted program in the public school as there was no focus on math at all, just a pull-out class focused on language arts. And no way do I want him in our local public high school in a few years. We are very, very disappointed in the high school.
Next week is our appointment with Doctor Ivy in Denver, Mattea's pulmonary hypertension doctor. I am anxious to meet him, and I am hoping for a good outcome. She's doing wonderful on the low dose of Viagra that he recommended and that the docs here ultimately claim credit for (grrr...). Also, the same day we leave, we have an appointment at the school to finally start moving on her placement. They are going to hopefully set her up for summer school. I think she is very ready to start now.
Then the following week, Kory has an appointment at Shriner's in Salt Lake for his legs. His prosthetics are ready to fall apart and plus we noticed that the leg he had surgery on looks all out of whack. He originally had the surgery because his (partial) tibia was not seated in the knee joint but joined to the outside of the knee. The orthopedic surgeon moved it into place about 2 years ago. Well, now it looks like it is angled to the inside of his knee joint instead, the opposite of what he was born with. Almost like it came back out of alignment in the opposite direction. His posture and gait are horrible. I am afraid of what it is doing to his hips. So hopefully they will be able to help him with that.
In the next few weeks, Mattea also has a genetics appointment, a sleep study, and an ABR hearing test, and I am sure there are more appointments that I am forgetting about. Her ophthalmology appointment is in July, I think...goodness we are going to be busy this summer!!! (And I still have to schedule dental check-ups for all the kids and an eye appointment for me, Mom.)

GOT IT!!!!!!!!!!!!!!!!!!!!!!!!!

For a $15 co-pay!!! Our insurance finally got its act together just in time, as we only had one dose left. Mattea has her Viagra!!! And she is doing fantastic!

My husband, in his usual tactful way ;o) says that maybe Dr. L refused to prescribe the Viagra because he was afraid Mattea would be taking away from his share.

Thank-you all so much for your prayers!!! We were ready to go to Canada if we had to, but this will be a lot easier.

Still not straightened out

It's good to be on my days off, I didn't get much sleep the first half of the week and I am really tired! We still don't have Mattea's Viagra situation straightened out. We have one or two more doses left, and still no positive word from Walgreen's. So tomorrow I have to get on the phone and get it straightened out or we will have to take her on back to the hospital for more. Or go bargain shopping for Viagra. It sure is working well for her! At dinner tonight in her high chair, she was actually vocalizing, saying "Ba, Ba, Ba, Ba" very clearly. First time she's ever done that!
Anyone know where to get Viagra for inexpensive?

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!