Wednesday, November 23, 2011

10 ways Clare is an amazing big sister...

1) When I have to give Max his inhaler, Clare tells him, "Hold your breath, Max!!"

2) She shares her beloved Oso with Max and shows him how she snuggles Oso. "See Max, I rub his bunny ears and put them in my neck."

3) She prays for Max every night.

4) She makes him laugh by spinning around and falling down.

5) She sings to him "Twinkle, Twinkle" in the car when he is crying.

6) She's sad for him when he gets shots.

7) She tells her grandparents what they should get Max for Christmas. "I know Max wants this. He told me."

8) She is so proud of him whenever we pick her up from school.

9) I can hear her on Max's monitor in the morning telling him good morning and talking to him while he's in his crib.

10) When he still cries, in spite of her singing or making silly faces, she says, "Mommy, he wants you. Maybe you should snuggle him."

Monday, November 7, 2011

Cardiologist Appointment

Today was a really good day. We journeyed down to Texas Children's for an echo cardiogram, chest x-ray, and an appointment with the cardiology team. Max was a champ and was all smiles to the nurses and doctors. Overall, everything was really positive. His heart is functioning well, he's growing well, and we don't have to go back to Texas Children's for two months. That was the biggest surprise to me. I thought for sure we'd be back in two weeks. But his overall health is so good they're going to continue to let him grow and get stronger. We are backing off of his medicine to once a day instead of twice daily.

The plan is still that he will have two more surgeries: the Glenn and the Fontan. The next one will reroute the blood flow from the superior vena cava directly to his lungs. This will cause pressure to his brain and he will have headaches after the surgery, but eventually his body will adjust and he will be fine. The third surgery would then finish the job of the second, where Max will only use the right side of his heart. The doctors mentioned that there is a slight possibility that they could repair the hole in wall of his heart, near the mitral valve, and switch his arteries in the next surgery and Max would have a total repair, but it's not likely. Part of the problem with this option, is the chords that are connected to the mitral valve are tethered in the opposite ventricle. Thus, fixing the hole would affect the chord and therefore affect his valve. Babies with valve issues eventually need transplants. Successful transplants only last, on average, for 14 years.

It's amazing the amount of confidence I receive every time I go to Texas Children's. It's truly an amazing place, and our team of doctors is amazing.

We were basically told that when Max starts to turn blue, we will have surgery. Estimated time until Max turns into a smurf: months. Thank you for the continued support and prayers. There is so much grace and blessings that are coming out of our little man's journey that I can't help but be grateful for his condition. Weird statement, I know, but there is no other way to describe it.

Wednesday, November 2, 2011

Getting closer to surgery #2

Monday was Halloween and of course we celebrated with a doctor's appointment. (Last week was the first week in 11 weeks that we didn't have a doctor's appointment.) Max dressed up as a, drum roll please, doctor. After all, doctors are our super heroes. He was so stinking cute. This time we went to see his pediatric surgeon for a final check up on his circumcision. No, it is not normal to have 4 appointments about a circumcision. It's not even normal to have one, but nothing is normal with my guy.

The great part was that I only had to go to the Texas Children's Cy-Fair location and not all the way to the medical center so it wasn't a huge production. I laughed as the nurse put us in an optometry room without a table. Seriously? Is the doctor going to examine him on the floor? I laughed even harder as I overheard the doctor asking the nurse what he was supposed to do in an optometry room. I feel sorry for these doctors some times. He drove all the way out to the Cy-Fair location, rearranged his schedule because he was preforming a major colon surgery in the afternoon in the medical center, and when he arrives he might as well have been seeing patients out of the cleaning closet because an optometry room has nothing, besides a sink, to help him with his appointment. He walked in just shaking his head and I said, "Happy Halloween!? You didn't know you were going to be an optometrist for the day, did you?"

The appointment proceeded with awkward, dad department conversation, that ended with me probably beet red and the doctor telling me everything was fine. He said that we won't need to see him again. So that's one doctor to check off of our list.

Yesterday, I saw an endocrinologist. I don't have Graves Disease, and more than likely my thyroid issues and heart palpitations are due to postpartum. Good news. I did more blood work and once the results are in, we will proceed from there.

Monday we go back to Texas Children's in the medical center for an echo cardiogram, and an appointment with the cardiology team. I have a feeling that Max will have surgery sooner rather than later. (For insurance purposes, this would be ideal) My feelings are based on him not finishing all of his feeds and his inability to increase the amount he eats. He looks really good, though, so I could be way off. Regardless, I've come to a beautiful place of peace about the next surgery. I had some rocky moments of crumbling with fear, but with increased prayer, peace has taken over.

Tuesday, Max has an appointment with Dr. Patel, his pediatrician. He'll start the RSV vaccination (5 shots at $3,000 a piece. Thank God for insurance) and receive his flu shot.

I'm starting to get back into running. Max can't control how his heart works, but I can.