It's been over 5 years since Parker's diagnosis of Pulmonary Hypertension. Parker has done so well and is growing and thriving. However, according to the last three echocardiograms since his bout with pneumonia last fall, his pulmonary pressures have increased. So, a couple of months ago, Jason and I decided that we were ready to seek a second opinion for Parker to make sure we weren't missing something and that we are currently doing everything possible for him. We contacted Dr. Hanna at The Children's Hospital of Philadelphia. He is one of the top Pediatric Pulmonary Hypertension Specialists in the country. It took several weeks for Dr. Hanna to review Parker's case, but we were finally able to talk with him the first week of June. We spent about an hour and a half on the telephone with him having a very detailed and encouraging conversation about Parker. Dr. Hanna sees 650 kids with PH and about 100 of those kids are similar cases to Parker, so he has a lot of experience and data to work with. Because of his experience with PH kids, he was able to share with us a very different perspective than we've heard before. He was able to "plug" Parker's numbers from all of his previous heart cath's into mathematical equations that he has formed in a way that showed very clearly that Parker has had improvement since 2008, even though the actual pressures have not changed much. It is a bit complicated, but basically, he was thrilled with the progress Parker has made since 2008 and said he rarely has seen that great of improvement. He said that given this information it is clear that Parker's body has done an outstanding job of repairing itself. That's not to say he is not sick--he still has a very severe case of PH, but the progress he has made is wonderful. He also feels strongly (although he can't necessarily confirm it) that the silent aspiration that Parker dealt with as a baby probably contributed largely to the PH--something we have always wondered about… So, in the end, Dr. Hanna didn't feel that we needed to make a trip to see him. He said it was clear by Parker's progress that his PH team here in NC (Dr. Williams) has done a wonderful job caring for him and he wouldn't change anything. He did suggest that we schedule Parker's heart catheterization soon and he suggested that Parker undergo a cardiac CT scan.
So, we scheduled Parker's annual heart catheterization for Wednesday, June 12th, the first day of summer break. As usual, we were very nervous for the test (I don't think that we will ever not be…), but we tried to have faith that the test would go smoothly with no problems.
Parker is such a brave little man and he did so well. We arrived at the hospital at 7:35am on Wednesday morning. We were called back to the pediatric surgical holding room at 7:50am.
Parker brought his friend, Max, along to help him stay brave.
At 8:20am, Parker was given the "sleepy medicine" (Versed), which almost always turns him into a giggle box. He laughs at everything and can't talk coherently. It really is funny!
Parker was taken to the Cath lab at 8:50am. He did fine and tolerated the procedure well (huge sigh of relief!). Dr. Williams came out to talk to us at about 11:00am. He said that there were no significant changes from last year. His pulmonary pressures are just a hair below systemic (this means the blood pressure in his lungs is about the same as his body's blood pressure--in a normal person, the pulmonary pressure should be about a quarter of the body's blood pressure). This was a good report for Parker. Like I mentioned before, his pulmonary pressures on echocardiogram (which is really just an estimate) had indicated that his pressures had increased. Now we know that they have not increased (another sigh of relief). No complaints here!
Parker also had a cardiac CT scan after the heart cath like Dr. Hanna had suggested. Part of it was done under sedation and part of it was done after Parker woke up from the anesthesia. He was so brave going into the "spinning donut"! We don't know the results of the CT scan--Dr. Williams is planning to send the results on to Dr. Hanna along with the heart cath results so he can provide us with more feedback. But for now, we are extremely happy with the results we do have and that we are done with this test for another year!
After the CT scan, Parker was able to go to a regular room to rest and recover for a few hours. He enjoyed watching "IronMan" and ordering his favorite meal from room service (grilled cheese sandwich, goldfish, and cherry Italian ice). He recovered fairly quickly from the procedures and so we were able to go home later that day. Thank you all for the continued love and support over the years for Parker. We truly appreciate it.
