Brady Update #2

Monday February 15, 2010: We drove up to Pennsylvania for Brady's Cardiology appointment and surgery followup. Brady's first appointment was actually at a remote office of the hospital because that was the only appointment they had available the same day as his surgery followup. When we got to the office they were running an hour behind. GREAT. Our appointment was suuposed to be at 900a and then we'd have the surgery follow up at 1115a at the main hospital. I asked that someone call the main hospital to find out what I should do about the surgery followup and the Surgery department had no problem waiting on me. Thank you God. I did not want to make a 3rd trip to Pittsburgh this week. Anyway, we finally were seen by the ultrasound tech who did Brady's echocardiogram and the whole process took at 45 minutes. Brady did very well with staying still while she did the echo and she was able to get views of everything they wanted to see. After the echo was done, the cardiologist wanted to see us. She told us that Brady has a vein going from his lungs to his heart that concerns them. She doesn't feel that this is causing his problems but it may be contributing to the problems. I don't really understand a whole lot about this 'vein' but I know once the Pulmonologist calls and gives me the results from the echo she will explain it a little better to me. Anyway, we have to have a cardiac MRI done so that they can see where the vein is coming from and where it is going and so on. We do have the MRI scheduled for March 22nd.

After our loooooong cardiology appointment, we headed to the main hospital for our surgery followup. The surgeon said that everything looks fantastic with Brady and that he would like to see him back in three months. The 'dipping' Brady has in his chest when he breathes could very much be a part of the surgery because they had to sew his diaphragm to his abdominal wall, and it may correct its self as he grows. If it wouldn't correct itself or would be something to cause serious issues then it would need to be fixed, but not until adolescence.

Overall I am INCREDIBLY satisfied with the treatment we are receiving through UPMC Children's Hospital. Every specialist we have seen so far is WONDERFUL. God truly has had his hand on this situation the entire time and I just Praise him for leading us to Pittsburgh.

Today Brady had his 6 month well check up. FINALLY! He is 26 inches long and 16lbs 11oz. At 5 months he was 16lbs 14oz so this is why we are doing weight checks on him right now. Good news is...he hasn't lost any weight since last week so we're ahead of ourselves! YAY!

I don't really have a whole lot of other news right now. Jaren is growing way to fast! He is basically a mini Jesse! The way he laughs, the little looks he gives me out of the corner of his eye, the way he says I love you with just a hug. HE IS HIS FATHER!!
He's using the potty faithfully before he gets in the bathtub so I believe this is a HUGE start. Its definitely a process, but we've started and I'm happy.

Anyway, I'll try to update on everyday life again soon. But for right now, I have 2 tests to take, a breathing treatment to give to Brady, laundry to fold so it doesn't wrinkle in the dryer, and a date with my pillow. I love you all!

Brady Update....

Well...after one disappointing appointment with a Pulmonologist here in WV, we asked our pediatrician to refer us to the Children's Hospital where Brady has his surgery.

We drove up to Pittsburgh this morning and my first impressions of the nurse and doctor in the pulmonology department was WONDERFUL.

After all the questions and checks several times here is what we found out.....

The surgeons notes state that they are 99.9% sure that Brady's hernia was congenital and therefore anything that could possibly be wrong from a baby being born with a diaphragmatic hernia they are checking.

It is almost a definite that he has bronchial malaysia (one of his bronchial tubes is 'floppy' or collapses as he breathes)

He has to have an echocardiogram to check for pulmonary hypertension. I don't know too much about this yet, but its not quite like an adult having hypertension, but the 'stress' from his heart could cause lung problems.

With the likelyhood that the hernia was congenital, they are going to do an infant pulmonary functions test to check the airflow through his airways as well as if one of his lungs is working harder than another and try to determine if possibly one of them developed differently.

If the infant PFT doesnt show everything they want, he will have to have a scope done, he will be put to sleep and then they will go through his nose.

In the last 3 weeks he has fallen from the 50 percentile to the 25 percentile so we have to do weight checks weekly.

His nebulizer medication has been changed to a steroid medication to help heal anything (cold etc.) that he could have in there contributing to the trouble he is having.

Monday we have the echocardiogram and his follow up from surgery as well, so I will definitely have more update on Monday.

Right now that is everything I can think of, but thank you everyone for your prayers and thoughts along the way. I'll update again soon.